Re: helpless/Becky

August 8, 2007

Hello Becky,

Decision making is never easy with LBD, but many caregivers have a life to

live too and emotions and guilt enter into the decision making. There is no

right and wrong in the decisions made. We all have different lifestyles and the

ones that you make are the ones that best fit you and your family.

Sad to say, but in the end our Loved Ones all end up the same way no matter

what road you take. The most important of all is that the Loved One is treated

with dignity and as a human being to the end. As far as I can see none of our

Loved Ones in this group are lacking that. You are here because you care.

The quantity of time that you can spend with your mom is not as important as

the quality of time that you put in with your mom.

If you have ever had small children, it is somewhat like when you start them

in a preschool and they are separated from you. They cry and they want to go

home, it is the same with a Loved One in a facility at first. If the staff where

your mom is are a nurturing, caring staff your mom will pick her favorites and

she will start to bond with some of them. As a parent of a small child your

first reaction is to rescue them and the same with a helpless parent. Be aware

of your mom's surroundings and how the staff treats the patients and if it all

seems to be a loving, caring facility your mom will acclimate at some point if

you don't make her anxious with your reactions to her emotions. When you are

there go around and introduce yourselves to other lady residents, so your mom

gets to know them. You chat with them too, so your mom feels comfortable about

them around her. If she sees you get along with them, she won't feel so lonely

having new friends. Even if she doesn't talk

,her friends will seek her out to sit with her, because they consider you a

friend and they will watch after her. Believe me, I know this works because I

have done this with my husband and he is never sitting alone or lonely and the

ladies tell me what goes on.

I don't know if this can be done in your working situation, but I have

requested to bring my husband home on weekends. I pick him up on Friday and

return him to the nh usually on Monday, sometimes on Sunday. He has the best of

both worlds and because he has friends at the nh, he aways goes back without a

problem, since I have introduced him to all the ladies. I introduced him to

ladies, because they are the most social. Men don't seem to talk unless a woman

talks to them or someone starts the conversation first. Men are not as nurturing

as woman. In our group there are some nurturing men, but as a whole they are not

as social as woman. If your mom is not in any activities she could feel lonely

and not getting enough stimulation. You know your mother better than anyone, so

if there is an activity like singing, exercise, arts and crafts or something on

the activity schedule you know that she would like to do, talk to the activity

director to make sure she is getting to some

of these activities.

My husband too gets cold and wears gloves and socks to bed, he also wears

gloves in the house when it is 100 outside and we don't have an a/c, so the

house is fairly warm too. The human thermostat doesn't work anymore. Some Loved

Ones sweat profusely, even in cold weather and others are freezing in hot

weather. I have heard both sides of the story here. When my husband entered the

nh he began to lose mobility too. He was walking with a walker at home and

before half a year at the nh he had lost that ability, because they have

liability laws at the nh and they did not want him getting up out of his

wheelchair without assistance, which they did not have time to walk him. There

is one lady that does that, but my husband would resist going with her and so

she quit trying to walk him. He did not get along with her personality, so he

did not get that exercise. I found out too late that he wasn't getting this

walking exercise, but I have made sure that he keeps his weight

bearing. I work with him holding the railing at the nh and standing up from his

chair and in the bathroom with the handicap bar, he can lift himself from his

wheelchair and pivot to sit on the toilet. He would not be doing that either if

I had let it go. On weekends when he is at home, he practices walkiing with the

walker and he can take about 12 -15 steps with a little assistance of holding

the walker steady for him and then he gets tired and wants to sit down. They

lose their muscle tone very fast if no one is exercising them and standing them

up. If your mother is not getting walking or weight bearing exercise make sure

to talk to someone about that. I now have a CNA at the nh that has volunteered

to make sure Jim gets weight bearing if I am not there. Jim does not qualify for

physical therapy at the nh.

My husband's Blood Pressure fluctuates too. It is up and down, but it is now

regulated with 6 mg of Atenolol. When his blood pressure was way up, the doctors

would want to give him blood pressure pills to lower it and then his blood

pressure would crash, he is very sensitive to blood pressure pills and then he

would faint and they would have to get him on Potassium Chloride to get the

pressure up again. He is on half of an Atenolol, which works just fine for him.

As far as support groups, it doesn't have to be LBD. Alzheimers or Parkinsons

support groups are great too. They were very helpful for us.

Please don't feel helpless, you have done the right thing in your situation.

She is not in a prison. Take her out to eat once in awhile. I take my husband

to the summer concerts in the park and pack a picnic lunch, he goes back to the

nh after. You can do little things with her to make her not feel so confined. If

she can't get in a car, sign her up for a handicap bus that will pick her up at

the nh and you too on the weekends and go on an outing. Leave your car in the

facility parking lot and get on the bus with her and go out. You will have to

have your request approved one time by her doctor to take her out, but if she is

able to get out, there should not be a problem and you will have to sign her out

and in each time. I have even taken my husband to hotels for a little mini

vacation on the weekends. Your mom will get used to the fact that even if she

goes back to the nursing home, she can still get out too at times. These are

just a few suggestions and I'll bet your

mom won't be crying and begging to go home all the time if she gets a taste of

getting out once in awhile...............Jan

rebecca kidd wrote:

Hello my name is Becky. My mother was recently diagnosed with LBD. While the

diagnosis in fairly recent, looking back the symptons have been going on for 18

months or more. Starting first with her hearing music and then on to

halluciations. She was in the hospital for a week and then sent to a nursing

home. I live 40 miles away and work full time and travel so I had no other

option. I can only visit on week-ends. I read some of the posting today and read

that maybe some of the things that are happening to her have happened to your

loved ones. She is always extremely cold, has large fluxuation in blood pressure

and she seems to be losong more mobility ieach day.

The very worse part is the same that Pat wrote. She thinks she's in trouble, has

done something wrong and is being punished. She wants to go home so badly and

cries. My heart is breaking or her. I don't know how to help her. I have never

felt so helpless in my life. I don't think there is a support group in Ohio, at

least not close to me.

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August 9, 2007

Jan:

Thank you for your supportive words. I'm sure this will get easier, but right

now I feel like I have to make so many decision and I don't have the tools to do

that. If I only had some answers. Mom is 85 and most of this started about 18

months ago. She is very bright and articulate and because of this I think she

was able to cover up a lot of things for so long. I would like to give her a

chance in assissted living, but we have to agree to a years lease and I don't

know what condition she'll be in in a years time. If after a few months she has

go to a NH, it probably won't be one as nice as the one she is in. This one has

a two year waiting list and we were very fortunate to get in when we did. She

got in because she was getting physical therapy and they had a opening for that.

Now that she's in she can stay, but if she leaves she'll have to go to the end

of the waiting list.

Also assisted living is quite pricey and if we have to pay out the years lease

and the NH it would deplete funds very rapidly.

I wish someone could give me an idea on how fast this will progress then I

could make an more informed decision.

Between the guilt and the decisions I feel so overwhelmed. I'm sure others

have felt this and I wonder how they have done it.

Again thanks for your letter you can't begin to know how much hust reading and

hearing what others are doing is helping.

Becky

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August 9, 2007

We did it a day at a time just like you are, Becky. Just a day at a time.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.