Re: How we got this way

[Guest guest]

Bless you Don.

[Guest guest]

To Don,

I am the last person you expected to respond (a daughter of a male with PLS),

but I just had to say from one who understands, I applaud and admire your

dedication and love for each other. I always think of this quote from a book

called " 7 Habits of the Most Successful People. " I don't remember it word

for word, but in a nutshell it states that

" to love " is a verb. It is an action that you choose in a relationship.

That " lovey dovey " feeling you have when you first meet someone is not what

love is about, thats just hormones. To love someone is to be kind,

considerate, respectful and caring (in sickness and in health). Being in a

marriage is hard enough when you have two separate thinking people living

together. I have to choose to " love " my husband almost on a daily basis.

That also goes for parents and children.

Don, you would make a great leader and provide a wonderful role model on how

to " love " . Best of luck with the boys club.

Liz

[Guest guest]

Don, I don't believe in cloning humans but I've changed my mind!!!

Flora Brand

St Pete FL.

[Guest guest]

Don, I don't believe in cloning humans but I've changed my mind!!!

Flora Brand

St Pete FL.

[Guest guest]

Well you made me cry!!! but very well put hope it helps others out

there.........ME

[Guest guest]

Well you made me cry!!! but very well put hope it helps others out

there.........ME

[Guest guest]

All I can think of to say is: Amen! My wife and I have had almost exactly the

same history/experience with PLS, even the time table. There are a couple of

differences: we started trying to figure out the problem together from day

one; I was already retired and I do have trouble focusing on something else

for very long, even when I may have a couple of " free hours " . Even if

verbose, it was a very good review of something I can really relate to!

Thanks for putting it in words!

Dick Erratt

[Guest guest]

Don

Bette Jo is very lucky to have you in her life, you are such a loving,

caring person.

I'm very fortunate that my Tom is like you and I hope that he stays that way

as we are going to start living together very soon.

Btw, I was a Cub Scout Den Mother, and Akla for 8 years and loved every

minute of it. Oh, the stories we could swap, camping was the best time. I

still volunteer with Scouts whenever I can, the last time was when we held a

camp with over 200 cubs, taught them about the enviroment. It was

spectacular!

Gloria

How we got this way

Greetings, FRIENDS.

I have been thinking about recent postings concerning

caregivers. As a male caregiver, I thought that perhaps I

could give at least my thoughts, for what they are worth. Fair

warning, I sometimes tend to become verbose.

For most of us, PLS has been introduced into our lives during

what we may call the mature years. As PLS generally occurs

after the age of 40 and up to the 70's, we are talking about

people born in the late 1930's, through the '50's. Born in

1944, I generally state that I was born too late for the sexual

revolution and too early for the computer age. However,

growing up in those years meant living in an environment that

usually meant the father was the breadwinner and the mother

was the homemaker. In the latter part of that time period,

more and more mothers had to work in order to keep the

ends tied.

The point is mothers were generally the caregivers in the

family. If one was sick, mother was there with soothing

words, chicken soup and cool compresses. If something was

needed for PTA, mother was there, sewing or selling candy

bars, what ever was needed. Sometimes dad got to the PTA

show on time, sometimes a little late, and occasionally some

event was missed because dad had to work. Where do you

think Cub Scout Den mothers came from?

As children in these homes, and they were good homes, we

learned from the roles that our mothers and fathers played in

the home and in society. Us guys generally did not learn how

to do domestic chores, cook, and give care to others. We cut

the grass, played outside games, built tree houses and learned

how to tinker with things.

Our sisters generally followed the lead of mothers, both their

own and their friend's. They became the nurturer, taking care

of sick dolls, learning how to efficiently keep a household

together.

That said, or likely over said, should we be surprised when

male spouses or partners cannot seem to relate to this

despicable disease and the its effects? Granted, spouses or

partners of either gender may not have the fortitude to deal

with PLS, but generally that gender seems to be male. I am

not in any way suggesting that a spouse or partner has

grounds for deserting their mate. I am suggesting that they

may not be prepared to fulfill the role of caregiver.

Bettie Jo began seeing signs of PLS in 1989, which happened

to be the same year that our son (now prefers Matt)

moved from Cub Scouts to Boy Scouts. I had not been

involved in his Cub Scout activities other than helping him

build his Pine Wood cars every year. I seemed to have time

for nothing but work, both at the office and at home. Our

garden was 10,000 square feet, producing enough vegetables

to feed the neighborhood. Our yard, while not huge, included

fifty rose bushes plus other ornamentals that required care

almost year round. After a camping weekend with

in his Webelos year, Bettie Jo came home and made it very

clear that if he ever went camping again, I would be the one to

go with him.

While I have not mentioned it, I am not generally a " joiner " .

However, when I do become involved in something, I go all

the way. Matt joined a Scout troop and I agreed to be an

assistant Scoutmaster. Within a month, I was Scoutmaster.

From that point, Boy Scouts became a large focus point in my

life. With work, always at least 50 hours weekly, plus special

weekend assignments, and leading an active troop, plus that

garden and yard, I had little time to seriously consider that

Bettie Jo has a medical problem. I began to notice that she

was having problems when she was no longer able to deal

with the corn, tomatoes, green beans, squash and butterbeans

that I brought up from the garden. Sometime in 1994 or 95 I

realized that the problem as real, but still did not think that it

really serious. By late 95 I knew that the problem was real,

and that it was serious. Bettie Jo was able to mask VERY

well, and many of her friends did not realize that she had any

problem. She had her neurologist conned, too. I finally ratted

on her, asking the doctor to watch her walk and delve deeper

during her next appointment. He did and then began to

suspect PLS as the cause. I began taking a much larger

interest in her condition and began going with her to her

appointments.

We received the diagnosis in 1997, and the beast was

officially named PLS. As I said, when I do get involved, I go

all the way. I began searching for information, which, among

other things, resulted in joining this group. Changes in work

resulted in fewer hours and no weekends out of town. I still a

Scoutmaster, but recruited and trained my replacement,

turning the unit over to him in 1998. We no longer had a

garden, and I did everything to simplify the yard work, even to

the point of not trying to keep up with the neighbors with

weekly mowing.

I thought that I could not experience a greater life style

changing event than bringing home our first child. Little did I

know.

I have gradually over the past few years evolved into primary

caregiver. Early in progression the tasks that I was required

to assume were small. Bettie Jo insists on doing as much as

possible for as long as possible. Many of my tasks required

developing means and methods for her to be able to continue

to be as independent as possible. Additional handrails on the

stairway to the basement, removing scatter rugs, moving beds

to make more room for walkers, installing special hinges on

doors to gain that extra 1-1/2 inch of opening are examples.

As the PLS has progressed, the care that Bettie Jo requires

has progressed. Laundry, grocery shopping, assisting in

bathing and dressing, insuring that everything is charged,

getting meals on the table sometimes with her involvement in

preparation, the level of tasks required increases. We have a

lady who comes in to do the heavy cleaning every two weeks.

Bettie Jo has a weekly massage. My parents visit once a

week to help out, which includes a meal with leftovers for a

day or two. Now we are looking at options to make the

bathrooms more accessible.

Has assuming the duties of caregiver been easy? Nope. Do I

become perturbed when I pick the remote off the floor or

have to blot up tea from the carpet for the 10th time? Sure.

Do I feel deprived when I am not able to do something that I

really wanted to do? Certainly. Do I take those frustrations

out on Bettie Jo? I try not to, but as my face and body

language speaks volumes, I am certain that she can read me

like a book. I have to mentally give myself a kick to remind

me that this is NOT her fault. Remember those contraptions

in the cartoons, where the character pulls on a rope that is

attached boards, springs and ultimately to boot that kicks the

character in the butt every time the rope is pulled? That is the

mental picture I give myself when I fail to remember.

I also sometimes forget to do things that need to be done.

Things like insuring that the Jazzy is charged, or pouring a

glass of tea before going to work when the pitcher is too full

for Bettie Jo to handle, making sure that there are clean night

gowns in the drawer, watering the plants when she has not

been able to get it done, making sure that I have the pager that

we use in the evening to let me know that she needs something.

Why am I unable to consider direction that would not include

being a caregiver? Well, I took a vow in 1968, and while I

may not have considered the possibility of PLS then, I still

promised " in sickness and in health " . As I mentioned earlier,

when I join in something, I go all the way. After all, we have

spent more than half our lives together. She left her family

followed me to another city. We have brought two children

into the world and raised them to be reasonably responsible

adults. We have built a life together and my life would not be

complete without her.

I am certain that I can be a very hard person to live with.

Indeed, we did have a rough time when we the cause her

problem. I thought that I had the problem and she could not

identify the problem. Before we knew what it was, PLS

nearly drove a wedge between us. We were able to hold

together until the beast had a name, and that name became the

bond for us. Bettie Jo says that I care for her " with

tenderness, concern, and respect " , a line from a prayer that

she wrote for our last anniversary.

However, care giving is a two way street. The person

needing care can make the task easy or hard. Bettie Jo

works hard to give me the opportunity to participate in as

many activities as I can. She does not complain when I rush

out to a meeting after supper. She senses when I need time to

myself, and arrange to spend a few days with her family to

give me that space. She works hard to be as independent as

possible given the progression of PLS. She also allows me to

have a voice in her care from others. Perhaps the most

important characteristic that she exhibits is respect. It is

seldom that she does not say " Thank You " when I do those

small things that always need to be done, from refilling her tea

cup to getting a replacement for the fork that hits the floor and

helping her into bed each night. Those two small words mean

so much to a caregiver.

While Bettie Jo and her care are always in my thoughts, I must

also have other things to focus on in order to keep everything

in proper perspective. I work full time. I am heavily involved

with Boy Scouts, a life member of the VFW and a member of

the UMM. If things get heavy for me, I can move my focus,

put my energies elsewhere for a time and be able to gain

respite, an interval of rest or relief. A weekend with Scouts

and Scouters can do wonders. I feel that it is necessary for

the caregiver, no matter the gender, to be able to shift focus.

Otherwise, the weight of PLS and the care that it requires can

be stiffing, not healthy for the individuals or their relationship.

I began this saga stating that perhaps caregivers of the male

gender are less prepared to fulfill that role then female. Let's

face it, most of the time we can barely care for ourselves.

How can we care for our mates when we don't really know

how everything works in a female? Then where can one go to

become better prepared? PLS-FRIENDS is certainly one

learning place. However, it may be a bit tough for male

caregivers to ask the questions that they may have of a mixed

audience. A few male caregivers have communicated direct

to share ideas and problems or just find support. Perhaps it

will be beneficial to establish a group where males may talk to

males without being embarrassed. I invite comment.

Don

[Guest guest]

Don...You are so right on and thanks for sharing. Flora insists that I not

refer to myself as her " caregiver " like I did in the beginning some 7 or 8

years ago. Although her PLS condition has caused her to alter her approach

to daily tasks, amazingly she finds some way to accomplish most of them.

I am convinced that nothing in life can prepare a person to assist a

partner who becomes physically challenged. We are pulled into uncharted

territory and need to rely on our instincts to do what we assume is

right....even though it is sometimes wrong. I remember in the beginning, I

boldly moved in to take charge and tend to her every

need. BIG MISTAKE! If you believe in the term " purity of intent " , I was

only trying to help and lessen her burden and to make her as comfortable as

possible. Cooking, cleaning, shopping, launrdy...activities as foreign to

me as splitting the atom, but I felt the need and desire to perform them on

her behalf. That went on for a while until Flora set the record straight

as only she can. Out of the blue, she said " enough is enough. If I need

your help I'll tell you! " Needless to say, that really put me back on my

heels and in all honesty, deeply hurt my feelings. Then I realized what a

great disservice I was doing her. She already had difficulty talking and

walking. She was struggling to come to terms with her life altering

condition. She had to quit her job which she loved dearly. She couldn't

drive any longer and had to rely on our daughter or me to take her

shopping. No one could decorate the house or trim the tree at Christmas

like she could...that too was gone. Then the light bulb went on. Her

independence was eroding fast enough and my stepping in and making

assumptions that she could no longer to this or that was merely speeding

the process needlessly. My " mother henning " , with all of the best

intentions in the world, was stifling and smothering her.

So, it was at that point I realized that I need to say on the periphery of

her daily existence and wait for her cue when she felt she needed me

assistance. That was very difficult for me to get used to and I still

struggle with it from time to time. But, being able to accomplish tasks at

her own speed and in her own way, gives Flora a true sense triumph and

makes me incredibly proud of her.

So, my advice to anyone feeling the need to step up to the plate and " take

over " is to cool your jets. Think long and hard before arbitrarily doing

what your partner may want to do...or try to do his or herself.

When they need your help, they'll let you know. Don't deny them at least

the opportunity to try. It's more important than you can imagine.

Happy Labor Day to all...Doug Brand/St. sburg, FL

" gloria "

<gbenoit1@telu To: <PLS-FRIENDS >

s.net> cc:

Subject: Re: How we

got this way

08/30/02 06:56

AM

Please respond

to PLS-FRIENDS

Don

Bette Jo is very lucky to have you in her life, you are such a loving,

caring person.

I'm very fortunate that my Tom is like you and I hope that he stays that

way

as we are going to start living together very soon.

Btw, I was a Cub Scout Den Mother, and Akla for 8 years and loved every

minute of it. Oh, the stories we could swap, camping was the best time. I

still volunteer with Scouts whenever I can, the last time was when we held

a

camp with over 200 cubs, taught them about the enviroment. It was

spectacular!

Gloria

How we got this way

Greetings, FRIENDS.

I have been thinking about recent postings concerning

caregivers. As a male caregiver, I thought that perhaps I

could give at least my thoughts, for what they are worth. Fair

warning, I sometimes tend to become verbose.

For most of us, PLS has been introduced into our lives during

what we may call the mature years. As PLS generally occurs

after the age of 40 and up to the 70's, we are talking about

people born in the late 1930's, through the '50's. Born in

1944, I generally state that I was born too late for the sexual

revolution and too early for the computer age. However,

growing up in those years meant living in an environment that

usually meant the father was the breadwinner and the mother

was the homemaker. In the latter part of that time period,

more and more mothers had to work in order to keep the

ends tied.

The point is mothers were generally the caregivers in the

family. If one was sick, mother was there with soothing

words, chicken soup and cool compresses. If something was

needed for PTA, mother was there, sewing or selling candy

bars, what ever was needed. Sometimes dad got to the PTA

show on time, sometimes a little late, and occasionally some

event was missed because dad had to work. Where do you

think Cub Scout Den mothers came from?

As children in these homes, and they were good homes, we

learned from the roles that our mothers and fathers played in

the home and in society. Us guys generally did not learn how

to do domestic chores, cook, and give care to others. We cut

the grass, played outside games, built tree houses and learned

how to tinker with things.

Our sisters generally followed the lead of mothers, both their

own and their friend's. They became the nurturer, taking care

of sick dolls, learning how to efficiently keep a household

together.

That said, or likely over said, should we be surprised when

male spouses or partners cannot seem to relate to this

despicable disease and the its effects? Granted, spouses or

partners of either gender may not have the fortitude to deal

with PLS, but generally that gender seems to be male. I am

not in any way suggesting that a spouse or partner has

grounds for deserting their mate. I am suggesting that they

may not be prepared to fulfill the role of caregiver.

Bettie Jo began seeing signs of PLS in 1989, which happened

to be the same year that our son (now prefers Matt)

moved from Cub Scouts to Boy Scouts. I had not been

involved in his Cub Scout activities other than helping him

build his Pine Wood cars every year. I seemed to have time

for nothing but work, both at the office and at home. Our

garden was 10,000 square feet, producing enough vegetables

to feed the neighborhood. Our yard, while not huge, included

fifty rose bushes plus other ornamentals that required care

almost year round. After a camping weekend with

in his Webelos year, Bettie Jo came home and made it very

clear that if he ever went camping again, I would be the one to

go with him.

While I have not mentioned it, I am not generally a " joiner " .

However, when I do become involved in something, I go all

the way. Matt joined a Scout troop and I agreed to be an

assistant Scoutmaster. Within a month, I was Scoutmaster.

From that point, Boy Scouts became a large focus point in my

life. With work, always at least 50 hours weekly, plus special

weekend assignments, and leading an active troop, plus that

garden and yard, I had little time to seriously consider that

Bettie Jo has a medical problem. I began to notice that she

was having problems when she was no longer able to deal

with the corn, tomatoes, green beans, squash and butterbeans

that I brought up from the garden. Sometime in 1994 or 95 I

realized that the problem as real, but still did not think that it

really serious. By late 95 I knew that the problem was real,

and that it was serious. Bettie Jo was able to mask VERY

well, and many of her friends did not realize that she had any

problem. She had her neurologist conned, too. I finally ratted

on her, asking the doctor to watch her walk and delve deeper

during her next appointment. He did and then began to

suspect PLS as the cause. I began taking a much larger

interest in her condition and began going with her to her

appointments.

We received the diagnosis in 1997, and the beast was

officially named PLS. As I said, when I do get involved, I go

all the way. I began searching for information, which, among

other things, resulted in joining this group. Changes in work

resulted in fewer hours and no weekends out of town. I still a

Scoutmaster, but recruited and trained my replacement,

turning the unit over to him in 1998. We no longer had a

garden, and I did everything to simplify the yard work, even to

the point of not trying to keep up with the neighbors with

weekly mowing.

I thought that I could not experience a greater life style

changing event than bringing home our first child. Little did I

know.

I have gradually over the past few years evolved into primary

caregiver. Early in progression the tasks that I was required

to assume were small. Bettie Jo insists on doing as much as

possible for as long as possible. Many of my tasks required

developing means and methods for her to be able to continue

to be as independent as possible. Additional handrails on the

stairway to the basement, removing scatter rugs, moving beds

to make more room for walkers, installing special hinges on

doors to gain that extra 1-1/2 inch of opening are examples.

As the PLS has progressed, the care that Bettie Jo requires

has progressed. Laundry, grocery shopping, assisting in

bathing and dressing, insuring that everything is charged,

getting meals on the table sometimes with her involvement in

preparation, the level of tasks required increases. We have a

lady who comes in to do the heavy cleaning every two weeks.

Bettie Jo has a weekly massage. My parents visit once a

week to help out, which includes a meal with leftovers for a

day or two. Now we are looking at options to make the

bathrooms more accessible.

Has assuming the duties of caregiver been easy? Nope. Do I

become perturbed when I pick the remote off the floor or

have to blot up tea from the carpet for the 10th time? Sure.

Do I feel deprived when I am not able to do something that I

really wanted to do? Certainly. Do I take those frustrations

out on Bettie Jo? I try not to, but as my face and body

language speaks volumes, I am certain that she can read me

like a book. I have to mentally give myself a kick to remind

me that this is NOT her fault. Remember those contraptions

in the cartoons, where the character pulls on a rope that is

attached boards, springs and ultimately to boot that kicks the

character in the butt every time the rope is pulled? That is the

mental picture I give myself when I fail to remember.

I also sometimes forget to do things that need to be done.

Things like insuring that the Jazzy is charged, or pouring a

glass of tea before going to work when the pitcher is too full

for Bettie Jo to handle, making sure that there are clean night

gowns in the drawer, watering the plants when she has not

been able to get it done, making sure that I have the pager that

we use in the evening to let me know that she needs something.

Why am I unable to consider direction that would not include

being a caregiver? Well, I took a vow in 1968, and while I

may not have considered the possibility of PLS then, I still

promised " in sickness and in health " . As I mentioned earlier,

when I join in something, I go all the way. After all, we have

spent more than half our lives together. She left her family

followed me to another city. We have brought two children

into the world and raised them to be reasonably responsible

adults. We have built a life together and my life would not be

complete without her.

I am certain that I can be a very hard person to live with.

Indeed, we did have a rough time when we the cause her

problem. I thought that I had the problem and she could not

identify the problem. Before we knew what it was, PLS

nearly drove a wedge between us. We were able to hold

together until the beast had a name, and that name became the

bond for us. Bettie Jo says that I care for her " with

tenderness, concern, and respect " , a line from a prayer that

she wrote for our last anniversary.

However, care giving is a two way street. The person

needing care can make the task easy or hard. Bettie Jo

works hard to give me the opportunity to participate in as

many activities as I can. She does not complain when I rush

out to a meeting after supper. She senses when I need time to

myself, and arrange to spend a few days with her family to

give me that space. She works hard to be as independent as

possible given the progression of PLS. She also allows me to

have a voice in her care from others. Perhaps the most

important characteristic that she exhibits is respect. It is

seldom that she does not say " Thank You " when I do those

small things that always need to be done, from refilling her tea

cup to getting a replacement for the fork that hits the floor and

helping her into bed each night. Those two small words mean

so much to a caregiver.

While Bettie Jo and her care are always in my thoughts, I must

also have other things to focus on in order to keep everything

in proper perspective. I work full time. I am heavily involved

with Boy Scouts, a life member of the VFW and a member of

the UMM. If things get heavy for me, I can move my focus,

put my energies elsewhere for a time and be able to gain

respite, an interval of rest or relief. A weekend with Scouts

and Scouters can do wonders. I feel that it is necessary for

the caregiver, no matter the gender, to be able to shift focus.

Otherwise, the weight of PLS and the care that it requires can

be stiffing, not healthy for the individuals or their relationship.

I began this saga stating that perhaps caregivers of the male

gender are less prepared to fulfill that role then female. Let's

face it, most of the time we can barely care for ourselves.

How can we care for our mates when we don't really know

how everything works in a female? Then where can one go to

become better prepared? PLS-FRIENDS is certainly one

learning place. However, it may be a bit tough for male

caregivers to ask the questions that they may have of a mixed

audience. A few male caregivers have communicated direct

to share ideas and problems or just find support. Perhaps it

will be beneficial to establish a group where males may talk to

males without being embarrassed. I invite comment.

Don

[Guest guest]

Hi Don,

Well, as usual, you have spoken from the heart and ever so eloquently.

I read your post and sobbed as I haven't in such a long time.

I think, sometimes, as the person with PLS, we see our spouses,

friends, family, but don't really " LOOK " from their eyes. Of course,

we can't, but we must try to remember to " look " at their life and

what they must come to terms with.

PLS is scarey as hell. Though my daily life doesn't show the fears

and concerns I have for tomorrow.....or even tonight. My face and

voice don't show the pain with every step or the sorrow at yet

another loss of an activity or chore.......I realize from your letter

that I'm also not seeing the fears and sorrows that must be in my

husbands heart...or his anger and resentment. After all, I'm not

exactly what he bargained for 28 years ago.

He works long hours and comes home dead tired. Perhaps he needs that

right now to distance himself from the future he also sees looming

just ahead. Through your words I've come to realize this morning

that I need to step back a bit and give him his own time and space.

I worry about the future and where I'll end up. With both my

children mentally retarded and no family left on either side, I can

often picture my life in some horrid state run nursing home, alone,

and defenselss.

But, now I see that perhaps Al (husband) is thinking about the same

thing.....and how overwhelming and hopeless it would feel to be

frightened of NOT being able to prevent this for a loved one.

I know that there are many PLSers here who have these same fears and

I wish I had answers for them as well as for myself. I know that we

all HATE this disease and none of us planned on spending our " golden "

years like this.....not us nor our " caregivers " .

Normally, I take each day and live it with good humor and acceptance

of this and whatever may come. But, some days just sneak up on you

and smack you upside the head. and as Ronnie says: it's a sucky

disease.

Anyways, thanks Don. Even though I've been crying for an hour,

you've given me much to think about and " OTHERS " to think of.

maggie

[Guest guest]

Hi Don,

Well, as usual, you have spoken from the heart and ever so eloquently.

I read your post and sobbed as I haven't in such a long time.

I think, sometimes, as the person with PLS, we see our spouses,

friends, family, but don't really " LOOK " from their eyes. Of course,

we can't, but we must try to remember to " look " at their life and

what they must come to terms with.

PLS is scarey as hell. Though my daily life doesn't show the fears

and concerns I have for tomorrow.....or even tonight. My face and

voice don't show the pain with every step or the sorrow at yet

another loss of an activity or chore.......I realize from your letter

that I'm also not seeing the fears and sorrows that must be in my

husbands heart...or his anger and resentment. After all, I'm not

exactly what he bargained for 28 years ago.

He works long hours and comes home dead tired. Perhaps he needs that

right now to distance himself from the future he also sees looming

just ahead. Through your words I've come to realize this morning

that I need to step back a bit and give him his own time and space.

I worry about the future and where I'll end up. With both my

children mentally retarded and no family left on either side, I can

often picture my life in some horrid state run nursing home, alone,

and defenselss.

But, now I see that perhaps Al (husband) is thinking about the same

thing.....and how overwhelming and hopeless it would feel to be

frightened of NOT being able to prevent this for a loved one.

I know that there are many PLSers here who have these same fears and

I wish I had answers for them as well as for myself. I know that we

all HATE this disease and none of us planned on spending our " golden "

years like this.....not us nor our " caregivers " .

Normally, I take each day and live it with good humor and acceptance

of this and whatever may come. But, some days just sneak up on you

and smack you upside the head. and as Ronnie says: it's a sucky

disease.

Anyways, thanks Don. Even though I've been crying for an hour,

you've given me much to think about and " OTHERS " to think of.

maggie

[Guest guest]

Don,

To start I must say that your words where very well written. They very

much brought tears to my eyes. I too am a caregiver but I am the female with

my husband being the one with the PLS. I could so relate to all the things

you said. But you must know that all these things hold true for we woman

also. We may have been raised to be the caregivers in the home. But with the

shoe on the other foot. Think of all the things that you do or did as the man

of the house. All those things I must do. I have to say this illness has made

me to learn many things that I thought I would never have a desire to learn

but have had to out of need. I as I am sure you know that many of the things

we have to have done on a day to day basis can be paid to have done. But

sometimes with money being as it is in this day and age we cannot afford to

pay to have these things done. Mowing the lawn, shoveling the snow, fixing

the car, spraying the wasp nest, taking the trash out and bringing the cans

back, unplugging the toilet, fixing the leaking faucet, hanging the PIC on

the wall, I could go on and on but I am sure you all get the idea. I think

that it just does not matter if you are a man or a woman these things are

very hard. I guess what it comes down to is that when you get married you are

a team and then when one of team members can't do there part you must pick up

the slack. So then you look and think do I want to stay part of this team if

I have to do it all? Well, like you I have to much investment in my team to

walk away. Even though some days I would love to. I stay I do I learn and

from here we will go on. Will I guess I have went on long enough? I hope I

have not offended anyone. Thanks for taking the time. Shirley

[Guest guest]

very well put maggie

[Guest guest]

Your post was wonderful! I selfishly was struck by two of your dates-

Mark's birthday is June 9, 1944 and our wedding was Feb. 17, 1968. Lavon

[Guest guest]

Don:

My husband could have signed your post. Bettie Jo and I are both

very lucky to have " good guys " like you. God Bless!

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

*************************************

[Guest guest]

Don:

My husband could have signed your post. Bettie Jo and I are both

very lucky to have " good guys " like you. God Bless!

Rita

Luv & Hugs!

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

Lord Keep Your Arm Around My Shoulder And Your Hand Over My Mouth

*************************************

[Guest guest]

Don and Shirley...and all...I am the non PLSer...Phil still does ALOT and I

worry he does too much...I try not to take his " freedom " away but sometimes

it hard to stop " mothering " him...he has always been the one to take care of

things...now its my turn...its a big change and I sure have realized how very

much I took for granted...I have gone back to work full time and hopefully

Phil can retire soon on disability...at this moment he is in the basement

cleaning...which is a chore in itself just getting down there...just last

Wednesday we signed a purchase agreement and listed our home for sale...a

ranch with a simpler floor plan is needed...we have spent the last 30 years

or so collecting...I guess it all comes down to priorities and love in the

end...its hard to part with " things " but thats all they are...but I confess I

HATE cutting the grass...aaachooo...lol...anyway...thats my two

cents...thanks Don...we all need vent and or release and you got us

started...I appreciate finding all of you here...thanks for

listening....Patti....

[Guest guest]

I just hope all the PLSers or caretakers, be it male or female, pass Don's

message on to their partner.

[Guest guest]

Lucy,

I

[Guest guest]

What more can we do? you seem to do more than you share,

(many others have too). What can I do to help? I feel like

screaming " let me do something " , but what is it? I don't know how

to raise money and since I've stopped working, I have very few

contacts. I've put my name out and my card reads 'will volunteer

for anything that don't grow hair on my face and chest'.

My doctor told me that it would be three years before they would

start stem cell research. Do you know of anything sooner?

When I think of polio, I wonder if we will be left with permanent

damage.

I wondered if we could do cook books, or other fund raisers. How

did they start with ALS, MS and all the other horrors. We have a

lot of enery in this group, we just need to channel it. We can't

just sit back and let this deamon possess us.

Ah! That feels better.

Love and Care to you all,

Charlie Brown's friend ... Lucy

unteer

> Maggie,

> I'm also scared of what my future will be. I have two very loving

children

> that are very willing to take over my care if something should

happen to my

> husband. But I would rather they enjoy their lives without the

extra worry

> and burden of a sick parent. I get depressed when I think nothing

is being

> done to find answers for our disease. At least now we do have

some work

> being done on our behalf, thanks to all who've donated to our NORD

fund, the

> NW research fund and the Team Walk. That gives me hope for a

future. I

> might be fooling myself in thinking that something will be done in

time for

> me, but hey, I can dream.. can't I??

> Thomson

> Solana Beach, Ca

> Visit www.als-pls.org

> and www.geocities.com/mdmfoo/pls.html

[Guest guest]

What more can we do? you seem to do more than you share,

(many others have too). What can I do to help? I feel like

screaming " let me do something " , but what is it? I don't know how

to raise money and since I've stopped working, I have very few

contacts. I've put my name out and my card reads 'will volunteer

for anything that don't grow hair on my face and chest'.

My doctor told me that it would be three years before they would

start stem cell research. Do you know of anything sooner?

When I think of polio, I wonder if we will be left with permanent

damage.

I wondered if we could do cook books, or other fund raisers. How

did they start with ALS, MS and all the other horrors. We have a

lot of enery in this group, we just need to channel it. We can't

just sit back and let this deamon possess us.

Ah! That feels better.

Love and Care to you all,

Charlie Brown's friend ... Lucy

unteer

> Maggie,

> I'm also scared of what my future will be. I have two very loving

children

> that are very willing to take over my care if something should

happen to my

> husband. But I would rather they enjoy their lives without the

extra worry

> and burden of a sick parent. I get depressed when I think nothing

is being

> done to find answers for our disease. At least now we do have

some work

> being done on our behalf, thanks to all who've donated to our NORD

fund, the

> NW research fund and the Team Walk. That gives me hope for a

future. I

> might be fooling myself in thinking that something will be done in

time for

> me, but hey, I can dream.. can't I??

> Thomson

> Solana Beach, Ca

> Visit www.als-pls.org

> and www.geocities.com/mdmfoo/pls.html

[Guest guest]

Don,

Your letter was so moving it made me almost cry. For a man to stand up

and shout his LOVE for his spouse is a wonderful thing. I

applaud you for doing this.

Jane Anne King

How we got this way

Greetings, FRIENDS.

I have been thinking about recent postings concerning

caregivers. As a male caregiver, I thought that perhaps I

could give at least my thoughts, for what they are worth. Fair

warning, I sometimes tend to become verbose.

For most of us, PLS has been introduced into our lives during

what we may call the mature years. As PLS generally occurs

after the age of 40 and up to the 70's, we are talking about

people born in the late 1930's, through the '50's. Born in

1944, I generally state that I was born too late for the sexual

revolution and too early for the computer age. However,

growing up in those years meant living in an environment that

usually meant the father was the breadwinner and the mother

was the homemaker. In the latter part of that time period,

more and more mothers had to work in order to keep the

ends tied.

The point is mothers were generally the caregivers in the

family. If one was sick, mother was there with soothing

words, chicken soup and cool compresses. If something was

needed for PTA, mother was there, sewing or selling candy

bars, what ever was needed. Sometimes dad got to the PTA

show on time, sometimes a little late, and occasionally some

event was missed because dad had to work. Where do you

think Cub Scout Den mothers came from?

As children in these homes, and they were good homes, we

learned from the roles that our mothers and fathers played in

the home and in society. Us guys generally did not learn how

to do domestic chores, cook, and give care to others. We cut

the grass, played outside games, built tree houses and learned

how to tinker with things.

Our sisters generally followed the lead of mothers, both their

own and their friend's. They became the nurturer, taking care

of sick dolls, learning how to efficiently keep a household

together.

That said, or likely over said, should we be surprised when

male spouses or partners cannot seem to relate to this

despicable disease and the its effects? Granted, spouses or

partners of either gender may not have the fortitude to deal

with PLS, but generally that gender seems to be male. I am

not in any way suggesting that a spouse or partner has

grounds for deserting their mate. I am suggesting that they

may not be prepared to fulfill the role of caregiver.

Bettie Jo began seeing signs of PLS in 1989, which happened

to be the same year that our son (now prefers Matt)

moved from Cub Scouts to Boy Scouts. I had not been

involved in his Cub Scout activities other than helping him

build his Pine Wood cars every year. I seemed to have time

for nothing but work, both at the office and at home. Our

garden was 10,000 square feet, producing enough vegetables

to feed the neighborhood. Our yard, while not huge, included

fifty rose bushes plus other ornamentals that required care

almost year round. After a camping weekend with

in his Webelos year, Bettie Jo came home and made it very

clear that if he ever went camping again, I would be the one to

go with him.

While I have not mentioned it, I am not generally a " joiner " .

However, when I do become involved in something, I go all

the way. Matt joined a Scout troop and I agreed to be an

assistant Scoutmaster. Within a month, I was Scoutmaster.

From that point, Boy Scouts became a large focus point in my

life. With work, always at least 50 hours weekly, plus special

weekend assignments, and leading an active troop, plus that

garden and yard, I had little time to seriously consider that

Bettie Jo has a medical problem. I began to notice that she

was having problems when she was no longer able to deal

with the corn, tomatoes, green beans, squash and butterbeans

that I brought up from the garden. Sometime in 1994 or 95 I

realized that the problem as real, but still did not think that it

really serious. By late 95 I knew that the problem was real,

and that it was serious. Bettie Jo was able to mask VERY

well, and many of her friends did not realize that she had any

problem. She had her neurologist conned, too. I finally ratted

on her, asking the doctor to watch her walk and delve deeper

during her next appointment. He did and then began to

suspect PLS as the cause. I began taking a much larger

interest in her condition and began going with her to her

appointments.

We received the diagnosis in 1997, and the beast was

officially named PLS. As I said, when I do get involved, I go

all the way. I began searching for information, which, among

other things, resulted in joining this group. Changes in work

resulted in fewer hours and no weekends out of town. I still a

Scoutmaster, but recruited and trained my replacement,

turning the unit over to him in 1998. We no longer had a

garden, and I did everything to simplify the yard work, even to

the point of not trying to keep up with the neighbors with

weekly mowing.

I thought that I could not experience a greater life style

changing event than bringing home our first child. Little did I

know.

I have gradually over the past few years evolved into primary

caregiver. Early in progression the tasks that I was required

to assume were small. Bettie Jo insists on doing as much as

possible for as long as possible. Many of my tasks required

developing means and methods for her to be able to continue

to be as independent as possible. Additional handrails on the

stairway to the basement, removing scatter rugs, moving beds

to make more room for walkers, installing special hinges on

doors to gain that extra 1-1/2 inch of opening are examples.

As the PLS has progressed, the care that Bettie Jo requires

has progressed. Laundry, grocery shopping, assisting in

bathing and dressing, insuring that everything is charged,

getting meals on the table sometimes with her involvement in

preparation, the level of tasks required increases. We have a

lady who comes in to do the heavy cleaning every two weeks.

Bettie Jo has a weekly massage. My parents visit once a

week to help out, which includes a meal with leftovers for a

day or two. Now we are looking at options to make the

bathrooms more accessible.

Has assuming the duties of caregiver been easy? Nope. Do I

become perturbed when I pick the remote off the floor or

have to blot up tea from the carpet for the 10th time? Sure.

Do I feel deprived when I am not able to do something that I

really wanted to do? Certainly. Do I take those frustrations

out on Bettie Jo? I try not to, but as my face and body

language speaks volumes, I am certain that she can read me

like a book. I have to mentally give myself a kick to remind

me that this is NOT her fault. Remember those contraptions

in the cartoons, where the character pulls on a rope that is

attached boards, springs and ultimately to boot that kicks the

character in the butt every time the rope is pulled? That is the

mental picture I give myself when I fail to remember.

I also sometimes forget to do things that need to be done.

Things like insuring that the Jazzy is charged, or pouring a

glass of tea before going to work when the pitcher is too full

for Bettie Jo to handle, making sure that there are clean night

gowns in the drawer, watering the plants when she has not

been able to get it done, making sure that I have the pager that

we use in the evening to let me know that she needs something.

Why am I unable to consider direction that would not include

being a caregiver? Well, I took a vow in 1968, and while I

may not have considered the possibility of PLS then, I still

promised " in sickness and in health " . As I mentioned earlier,

when I join in something, I go all the way. After all, we have

spent more than half our lives together. She left her family

followed me to another city. We have brought two children

into the world and raised them to be reasonably responsible

adults. We have built a life together and my life would not be

complete without her.

I am certain that I can be a very hard person to live with.

Indeed, we did have a rough time when we the cause her

problem. I thought that I had the problem and she could not

identify the problem. Before we knew what it was, PLS

nearly drove a wedge between us. We were able to hold

together until the beast had a name, and that name became the

bond for us. Bettie Jo says that I care for her " with

tenderness, concern, and respect " , a line from a prayer that

she wrote for our last anniversary.

However, care giving is a two way street. The person

needing care can make the task easy or hard. Bettie Jo

works hard to give me the opportunity to participate in as

many activities as I can. She does not complain when I rush

out to a meeting after supper. She senses when I need time to

myself, and arrange to spend a few days with her family to

give me that space. She works hard to be as independent as

possible given the progression of PLS. She also allows me to

have a voice in her care from others. Perhaps the most

important characteristic that she exhibits is respect. It is

seldom that she does not say " Thank You " when I do those

small things that always need to be done, from refilling her tea

cup to getting a replacement for the fork that hits the floor and

helping her into bed each night. Those two small words mean

so much to a caregiver.

While Bettie Jo and her care are always in my thoughts, I must

also have other things to focus on in order to keep everything

in proper perspective. I work full time. I am heavily involved

with Boy Scouts, a life member of the VFW and a member of

the UMM. If things get heavy for me, I can move my focus,

put my energies elsewhere for a time and be able to gain

respite, an interval of rest or relief. A weekend with Scouts

and Scouters can do wonders. I feel that it is necessary for

the caregiver, no matter the gender, to be able to shift focus.

Otherwise, the weight of PLS and the care that it requires can

be stiffing, not healthy for the individuals or their relationship.

I began this saga stating that perhaps caregivers of the male

gender are less prepared to fulfill that role then female. Let's

face it, most of the time we can barely care for ourselves.

How can we care for our mates when we don't really know

how everything works in a female? Then where can one go to

become better prepared? PLS-FRIENDS is certainly one

learning place. However, it may be a bit tough for male

caregivers to ask the questions that they may have of a mixed

audience. A few male caregivers have communicated direct

to share ideas and problems or just find support. Perhaps it

will be beneficial to establish a group where males may talk to

males without being embarrassed. I invite comment.

Don

[Guest guest]

I agree, we should all do something with this energy, if it's cookbook or

anything I'm for it.

Gloria

Re: How we got this way

> What more can we do? you seem to do more than you share,

> (many others have too). What can I do to help? I feel like

> screaming " let me do something " , but what is it? I don't know how

> to raise money and since I've stopped working, I have very few

> contacts. I've put my name out and my card reads 'will volunteer

> for anything that don't grow hair on my face and chest'.

> My doctor told me that it would be three years before they would

> start stem cell research. Do you know of anything sooner?

> When I think of polio, I wonder if we will be left with permanent

> damage.

> I wondered if we could do cook books, or other fund raisers. How

> did they start with ALS, MS and all the other horrors. We have a

> lot of enery in this group, we just need to channel it. We can't

> just sit back and let this deamon possess us.

> Ah! That feels better.

> Love and Care to you all,

> Charlie Brown's friend ... Lucy

>

>

> unteer

> > Maggie,

> > I'm also scared of what my future will be. I have two very loving

> children

> > that are very willing to take over my care if something should

> happen to my

> > husband. But I would rather they enjoy their lives without the

> extra worry

> > and burden of a sick parent. I get depressed when I think nothing

> is being

> > done to find answers for our disease. At least now we do have

> some work

> > being done on our behalf, thanks to all who've donated to our NORD

> fund, the

> > NW research fund and the Team Walk. That gives me hope for a

> future. I

> > might be fooling myself in thinking that something will be done in

> time for

> > me, but hey, I can dream.. can't I??

> > Thomson

> > Solana Beach, Ca

> > Visit www.als-pls.org

> > and www.geocities.com/mdmfoo/pls.html

>

>

>

>

>

>

[Guest guest]

I agree, we should all do something with this energy, if it's cookbook or

anything I'm for it.

Gloria

Re: How we got this way

> What more can we do? you seem to do more than you share,

> (many others have too). What can I do to help? I feel like

> screaming " let me do something " , but what is it? I don't know how

> to raise money and since I've stopped working, I have very few

> contacts. I've put my name out and my card reads 'will volunteer

> for anything that don't grow hair on my face and chest'.

> My doctor told me that it would be three years before they would

> start stem cell research. Do you know of anything sooner?

> When I think of polio, I wonder if we will be left with permanent

> damage.

> I wondered if we could do cook books, or other fund raisers. How

> did they start with ALS, MS and all the other horrors. We have a

> lot of enery in this group, we just need to channel it. We can't

> just sit back and let this deamon possess us.

> Ah! That feels better.

> Love and Care to you all,

> Charlie Brown's friend ... Lucy

>

>

> unteer

> > Maggie,

> > I'm also scared of what my future will be. I have two very loving

> children

> > that are very willing to take over my care if something should

> happen to my

> > husband. But I would rather they enjoy their lives without the

> extra worry

> > and burden of a sick parent. I get depressed when I think nothing

> is being

> > done to find answers for our disease. At least now we do have

> some work

> > being done on our behalf, thanks to all who've donated to our NORD

> fund, the

> > NW research fund and the Team Walk. That gives me hope for a

> future. I

> > might be fooling myself in thinking that something will be done in

> time for

> > me, but hey, I can dream.. can't I??

> > Thomson

> > Solana Beach, Ca

> > Visit www.als-pls.org

> > and www.geocities.com/mdmfoo/pls.html

>

>

>

>

>

>

[Guest guest]

Dear Don,

I read every word of your message and commend you for your devotion to

Bettie Jo. We seem to have various levels of support from

spouses/significant others--you being at the top of the spectrum and some

other at the opposite end. Sadly, my husband is one of those at the

opposite end. I go for tests, appointments, and treatments alone (even my

daily radiation treatments) as if I were a widow. It is one thing to not

know how to help or how much help to give and another matter to state

categorically that " I am retired and I want to spend my time doing the

things I want to do " , " I have no intentions of being your nurse or physical

therapist " , " I don't want to take you there because it would break up my

whole day " , and " You are just pretending to be sick to get attention " . How

about 'them' apples? As many PLSers know, I have a collection of medical

challenges besides PLS including a severe case of fibromyalgia, recent

breast cancer, and now a large uterine tumor that we are just 'watching'.

My very worst affliction is my loneliness and broken heart. Heartwarming as

your story is, it is like rubbing salt in a wound.

Bless you for your tender caring. Bettie Jo is a very lucky lady and

clearly you feel the same about her.

Dolores

How we got this way

Greetings, FRIENDS.

I have been thinking about recent postings concerning

caregivers. As a male caregiver, I thought that perhaps I

could give at least my thoughts, for what they are worth. Fair

warning, I sometimes tend to become verbose.

For most of us, PLS has been introduced into our lives during

what we may call the mature years. As PLS generally occurs

after the age of 40 and up to the 70's, we are talking about

people born in the late 1930's, through the '50's. Born in

1944, I generally state that I was born too late for the sexual

revolution and too early for the computer age. However,

growing up in those years meant living in an environment that

usually meant the father was the breadwinner and the mother

was the homemaker. In the latter part of that time period,

more and more mothers had to work in order to keep the

ends tied.

The point is mothers were generally the caregivers in the

family. If one was sick, mother was there with soothing

words, chicken soup and cool compresses. If something was

needed for PTA, mother was there, sewing or selling candy

bars, what ever was needed. Sometimes dad got to the PTA

show on time, sometimes a little late, and occasionally some

event was missed because dad had to work. Where do you

think Cub Scout Den mothers came from?

As children in these homes, and they were good homes, we

learned from the roles that our mothers and fathers played in

the home and in society. Us guys generally did not learn how

to do domestic chores, cook, and give care to others. We cut

the grass, played outside games, built tree houses and learned

how to tinker with things.

Our sisters generally followed the lead of mothers, both their

own and their friend's. They became the nurturer, taking care

of sick dolls, learning how to efficiently keep a household

together.

That said, or likely over said, should we be surprised when

male spouses or partners cannot seem to relate to this

despicable disease and the its effects? Granted, spouses or

partners of either gender may not have the fortitude to deal

with PLS, but generally that gender seems to be male. I am

not in any way suggesting that a spouse or partner has

grounds for deserting their mate. I am suggesting that they

may not be prepared to fulfill the role of caregiver.

Bettie Jo began seeing signs of PLS in 1989, which happened

to be the same year that our son (now prefers Matt)

moved from Cub Scouts to Boy Scouts. I had not been

involved in his Cub Scout activities other than helping him

build his Pine Wood cars every year. I seemed to have time

for nothing but work, both at the office and at home. Our

garden was 10,000 square feet, producing enough vegetables

to feed the neighborhood. Our yard, while not huge, included

fifty rose bushes plus other ornamentals that required care

almost year round. After a camping weekend with

in his Webelos year, Bettie Jo came home and made it very

clear that if he ever went camping again, I would be the one to

go with him.

While I have not mentioned it, I am not generally a " joiner " .

However, when I do become involved in something, I go all

the way. Matt joined a Scout troop and I agreed to be an

assistant Scoutmaster. Within a month, I was Scoutmaster.

From that point, Boy Scouts became a large focus point in my

life. With work, always at least 50 hours weekly, plus special

weekend assignments, and leading an active troop, plus that

garden and yard, I had little time to seriously consider that

Bettie Jo has a medical problem. I began to notice that she

was having problems when she was no longer able to deal

with the corn, tomatoes, green beans, squash and butterbeans

that I brought up from the garden. Sometime in 1994 or 95 I

realized that the problem as real, but still did not think that it

really serious. By late 95 I knew that the problem was real,

and that it was serious. Bettie Jo was able to mask VERY

well, and many of her friends did not realize that she had any

problem. She had her neurologist conned, too. I finally ratted

on her, asking the doctor to watch her walk and delve deeper

during her next appointment. He did and then began to

suspect PLS as the cause. I began taking a much larger

interest in her condition and began going with her to her

appointments.

We received the diagnosis in 1997, and the beast was

officially named PLS. As I said, when I do get involved, I go

all the way. I began searching for information, which, among

other things, resulted in joining this group. Changes in work

resulted in fewer hours and no weekends out of town. I still a

Scoutmaster, but recruited and trained my replacement,

turning the unit over to him in 1998. We no longer had a

garden, and I did everything to simplify the yard work, even to

the point of not trying to keep up with the neighbors with

weekly mowing.

I thought that I could not experience a greater life style

changing event than bringing home our first child. Little did I

know.

I have gradually over the past few years evolved into primary

caregiver. Early in progression the tasks that I was required

to assume were small. Bettie Jo insists on doing as much as

possible for as long as possible. Many of my tasks required

developing means and methods for her to be able to continue

to be as independent as possible. Additional handrails on the

stairway to the basement, removing scatter rugs, moving beds

to make more room for walkers, installing special hinges on

doors to gain that extra 1-1/2 inch of opening are examples.

As the PLS has progressed, the care that Bettie Jo requires

has progressed. Laundry, grocery shopping, assisting in

bathing and dressing, insuring that everything is charged,

getting meals on the table sometimes with her involvement in

preparation, the level of tasks required increases. We have a

lady who comes in to do the heavy cleaning every two weeks.

Bettie Jo has a weekly massage. My parents visit once a

week to help out, which includes a meal with leftovers for a

day or two. Now we are looking at options to make the

bathrooms more accessible.

Has assuming the duties of caregiver been easy? Nope. Do I

become perturbed when I pick the remote off the floor or

have to blot up tea from the carpet for the 10th time? Sure.

Do I feel deprived when I am not able to do something that I

really wanted to do? Certainly. Do I take those frustrations

out on Bettie Jo? I try not to, but as my face and body

language speaks volumes, I am certain that she can read me

like a book. I have to mentally give myself a kick to remind

me that this is NOT her fault. Remember those contraptions

in the cartoons, where the character pulls on a rope that is

attached boards, springs and ultimately to boot that kicks the

character in the butt every time the rope is pulled? That is the

mental picture I give myself when I fail to remember.

I also sometimes forget to do things that need to be done.

Things like insuring that the Jazzy is charged, or pouring a

glass of tea before going to work when the pitcher is too full

for Bettie Jo to handle, making sure that there are clean night

gowns in the drawer, watering the plants when she has not

been able to get it done, making sure that I have the pager that

we use in the evening to let me know that she needs something.

Why am I unable to consider direction that would not include

being a caregiver? Well, I took a vow in 1968, and while I

may not have considered the possibility of PLS then, I still

promised " in sickness and in health " . As I mentioned earlier,

when I join in something, I go all the way. After all, we have

spent more than half our lives together. She left her family

followed me to another city. We have brought two children

into the world and raised them to be reasonably responsible

adults. We have built a life together and my life would not be

complete without her.

I am certain that I can be a very hard person to live with.

Indeed, we did have a rough time when we the cause her

problem. I thought that I had the problem and she could not

identify the problem. Before we knew what it was, PLS

nearly drove a wedge between us. We were able to hold

together until the beast had a name, and that name became the

bond for us. Bettie Jo says that I care for her " with

tenderness, concern, and respect " , a line from a prayer that

she wrote for our last anniversary.

However, care giving is a two way street. The person

needing care can make the task easy or hard. Bettie Jo

works hard to give me the opportunity to participate in as

many activities as I can. She does not complain when I rush

out to a meeting after supper. She senses when I need time to

myself, and arrange to spend a few days with her family to

give me that space. She works hard to be as independent as

possible given the progression of PLS. She also allows me to

have a voice in her care from others. Perhaps the most

important characteristic that she exhibits is respect. It is

seldom that she does not say " Thank You " when I do those

small things that always need to be done, from refilling her tea

cup to getting a replacement for the fork that hits the floor and

helping her into bed each night. Those two small words mean

so much to a caregiver.

While Bettie Jo and her care are always in my thoughts, I must

also have other things to focus on in order to keep everything

in proper perspective. I work full time. I am heavily involved

with Boy Scouts, a life member of the VFW and a member of

the UMM. If things get heavy for me, I can move my focus,

put my energies elsewhere for a time and be able to gain

respite, an interval of rest or relief. A weekend with Scouts

and Scouters can do wonders. I feel that it is necessary for

the caregiver, no matter the gender, to be able to shift focus.

Otherwise, the weight of PLS and the care that it requires can

be stiffing, not healthy for the individuals or their relationship.

I began this saga stating that perhaps caregivers of the male

gender are less prepared to fulfill that role then female. Let's

face it, most of the time we can barely care for ourselves.

How can we care for our mates when we don't really know

how everything works in a female? Then where can one go to

become better prepared? PLS-FRIENDS is certainly one

learning place. However, it may be a bit tough for male

caregivers to ask the questions that they may have of a mixed

audience. A few male caregivers have communicated direct

to share ideas and problems or just find support. Perhaps it

will be beneficial to establish a group where males may talk to

males without being embarrassed. I invite comment.

Don