Re: Dorothy Re: not eating, drinking much...

[Guest guest]

Hi Dorothy,

You stated: And I have a shopping list for this next phase I'm working on: wheel

chair ramp for access to house that's about 6 feet vertical gain, wheelchair

pad, small transfer chair.

I have a protable ramp that I used for my husband and that I used to rent at the

Medical Supply Store near us and ended up buying, because I used it so much. It

is not 6 ft, but 5 ft. I just needed it for one step up at our front door.

It is similar to this ramp:

http://www.portable-wheelchair-ramps.com/Wheelchair_Ramps/signature_suitcase_ram\

ps.aspx

I also have a gel seat wheelchair pad, supposed to be top of the line to avoid

pressure sores. Similar to this seat cushion:

http://www.jansenmedical.net/premium-skin-protection-gel-e-seat-cushion-drive-me\

dical.html

I also have a small transport chair similar to this photo:

http://www.activelivingnow.com/Invacare_Lightweight_Transport_Wheelchair_p/isg91\

05h.htm

The seat and back are in good shape, but some of the gray paint is scratched on

the foot rests and around the arm rests.

If you are interested, I don't need these anymore. I live in California, so

would have to work out how to ship these to you. Just let me know if you are

interested in any of the above. I will sell them for half the price.

Jan Colello

San Francisco Bay Area, California

Husband, Jim dx w/LBD Oct. 2003

Deceased, January 22, 2011

________________________________

To: LBDcaregivers

Sent: Sat, February 19, 2011 11:53:01 AM

Subject: RE: Re: not eating, drinking much...

I want to thank each and every person who responded to this post of mine.

Everyone provided valuable insight and support and I used every bit of it!

How things have progressed since - I talked with my husband about how I

feel trying to make her eat and especially drink all the time - I am worn

out at the end of the day and all of our time together is focused on this

issue which is made even more difficult by the fact she doesn't feel like

drinking and eating. I told him I don't feel this is giving her any quality

of life and it certainly is not doing anything for me. I gave him some

material to read about preparing for end of life and what sort of things

might be expected. I told him I felt it was time we focused on making the

time quality and not pushing to make quantity anymore - it's all going to

the same place eventually and there's no getting around it (he knows but

maybe a little denial stage in there). He said it would be good to not

push things anymore and if she wants to eat and drink that's great but we'll

just not push it. Even though we both felt grief with this new phase we

felt relief at the same time. When it's over, whenever that might be, we're

going to go away for a bit and recover and reconnect. It's one nice thing

to look forward to and I'm sure there will be times I need something like

that to think about to get through.

After talking these things over we asked for time with her home health nurse

to talk things over with. Her nurse went through this with her mother in

law for three and a half years so she is very understanding and helpful for

us. She suggested we get all we can through home care before moving into

hospice because there's some services we could use that we can access

through home care. Then in a week or two we can ask to transition to

hospice and speak to their team about making arrangements that fit us. I

feel really good about this now and I think we are all making this

transition smoother now. I felt like I got a breath of fresh air!

I did manage to get her hydrated by the heavy pushing of " drink drink drink "

and get the diarrhea stopped and I did such a good job that her lower legs

and feet got swollen from edema (and not moving about). Her mobility is

terrible now, barely able to ambulate. As I was holding her to keep her

from falling yesterday while walking to the bathroom, I was amazed feeling

a lot of muscles working but not working together and the result was she

couldn't go far at all and was exhausted from the effort of trying to walk.

We took the outer rim off the wheelchair wheels (it's for the user to self

propel) and gained 3 " and took the door off the bathroom so now we can

squeeze the wheelchair through all doorways.

My mil does not remember the conversation about LBD but remembers

Parkinson's. She does not seem to be aware she has a terminal illness at

the moment. Or maybe it's a denial stage, not sure. There has been an

obsession of " am I dying? " the last few days. She asks this frequently.

She tries to start conversations with the part time caregivers, " they say

I'm dying... " . She is fishing for information but I'm not at all sure how

to deal with this and hoping the hospice folks might have more experience.

There was a time that she understood - or we all had the talk anyway. Maybe

she thought it would change or maybe she forgot, not sure. I'm aware of

the various stages of death and dying, having read Kubler Ross's

On Death and Dying and subsequent books years ago. I'm just not familiar

with how that might work with the memory/cognitive issues of LBD.

Two days ago I was seriously wondering if she would last a month. Yesterday

we stopped pressing fluids and food but we did have some nice " comfort food "

that she likes for dinner. Today she is really perked up, smiling,

laughing but still barely able to ambulate. She could be like this for

years perhaps - that is how quickly her status changes. I'm seeing new

ripples in the roller coaster. I think there's several tracks to it!

And I have a shopping list for this next phase I'm working on: wheel chair

ramp for access to house that's about 6 feet vertical gain, bed pad, wheel

chair pad, small transfer chair, double hinges for the doorways for more

width (we have a TINY house with narrow doorways), second commode, over bed

table, body props for turning, posey boots to prevent heel sores, different

diapers for nighttime or days she's unable to get up. I am seeing that

with these new major phases comes a whole new list of equipment needs.

-Dorothy

[Guest guest]

Dorothy, this is the actual wheelchair seat cushion that I have, it's a Postura

http://www.advancedbrace.com/support/pc/viewPrd.asp?idproduct=380 & idcategory=60

________________________________

To: LBDcaregivers

Sent: Sat, February 19, 2011 12:58:51 PM

Subject: Re: Dorothy Re: not eating, drinking much...

 

Hi Dorothy,

You stated: And I have a shopping list for this next phase I'm working on: wheel

chair ramp for access to house that's about 6 feet vertical gain, wheelchair

pad, small transfer chair.

I have a protable ramp that I used for my husband and that I used to rent at the

Medical Supply Store near us and ended up buying, because I used it so much. It

is not 6 ft, but 5 ft. I just needed it for one step up at our front door.

It is similar to this ramp:

http://www.portable-wheelchair-ramps.com/Wheelchair_Ramps/signature_suitcase_ram\

ps.aspx

I also have a gel seat wheelchair pad, supposed to be top of the line to avoid

pressure sores. Similar to this seat cushion:

http://www.jansenmedical.net/premium-skin-protection-gel-e-seat-cushion-drive-me\

dical.html

I also have a small transport chair similar to this photo:

http://www.activelivingnow.com/Invacare_Lightweight_Transport_Wheelchair_p/isg91\

05h.htm

The seat and back are in good shape, but some of the gray paint is scratched on

the foot rests and around the arm rests.

If you are interested, I don't need these anymore. I live in California, so

would have to work out how to ship these to you. Just let me know if you are

interested in any of the above. I will sell them for half the price.

Jan Colello

San Francisco Bay Area, California

Husband, Jim dx w/LBD Oct. 2003

Deceased, January 22, 2011

________________________________

To: LBDcaregivers

Sent: Sat, February 19, 2011 11:53:01 AM

Subject: RE: Re: not eating, drinking much...

I want to thank each and every person who responded to this post of mine.

Everyone provided valuable insight and support and I used every bit of it!

How things have progressed since - I talked with my husband about how I

feel trying to make her eat and especially drink all the time - I am worn

out at the end of the day and all of our time together is focused on this

issue which is made even more difficult by the fact she doesn't feel like

drinking and eating. I told him I don't feel this is giving her any quality

of life and it certainly is not doing anything for me. I gave him some

material to read about preparing for end of life and what sort of things

might be expected. I told him I felt it was time we focused on making the

time quality and not pushing to make quantity anymore - it's all going to

the same place eventually and there's no getting around it (he knows but

maybe a little denial stage in there). He said it would be good to not

push things anymore and if she wants to eat and drink that's great but we'll

just not push it. Even though we both felt grief with this new phase we

felt relief at the same time. When it's over, whenever that might be, we're

going to go away for a bit and recover and reconnect. It's one nice thing

to look forward to and I'm sure there will be times I need something like

that to think about to get through.

After talking these things over we asked for time with her home health nurse

to talk things over with. Her nurse went through this with her mother in

law for three and a half years so she is very understanding and helpful for

us. She suggested we get all we can through home care before moving into

hospice because there's some services we could use that we can access

through home care. Then in a week or two we can ask to transition to

hospice and speak to their team about making arrangements that fit us. I

feel really good about this now and I think we are all making this

transition smoother now. I felt like I got a breath of fresh air!

I did manage to get her hydrated by the heavy pushing of " drink drink drink "

and get the diarrhea stopped and I did such a good job that her lower legs

and feet got swollen from edema (and not moving about). Her mobility is

terrible now, barely able to ambulate. As I was holding her to keep her

from falling yesterday while walking to the bathroom, I was amazed feeling

a lot of muscles working but not working together and the result was she

couldn't go far at all and was exhausted from the effort of trying to walk.

We took the outer rim off the wheelchair wheels (it's for the user to self

propel) and gained 3 " and took the door off the bathroom so now we can

squeeze the wheelchair through all doorways.

My mil does not remember the conversation about LBD but remembers

Parkinson's. She does not seem to be aware she has a terminal illness at

the moment. Or maybe it's a denial stage, not sure. There has been an

obsession of " am I dying? " the last few days. She asks this frequently.

She tries to start conversations with the part time caregivers, " they say

I'm dying... " . She is fishing for information but I'm not at all sure how

to deal with this and hoping the hospice folks might have more experience.

There was a time that she understood - or we all had the talk anyway. Maybe

she thought it would change or maybe she forgot, not sure. I'm aware of

the various stages of death and dying, having read Kubler Ross's

On Death and Dying and subsequent books years ago. I'm just not familiar

with how that might work with the memory/cognitive issues of LBD.

Two days ago I was seriously wondering if she would last a month. Yesterday

we stopped pressing fluids and food but we did have some nice " comfort food "

that she likes for dinner. Today she is really perked up, smiling,

laughing but still barely able to ambulate. She could be like this for

years perhaps - that is how quickly her status changes. I'm seeing new

ripples in the roller coaster. I think there's several tracks to it!

And I have a shopping list for this next phase I'm working on: wheel chair

ramp for access to house that's about 6 feet vertical gain, bed pad, wheel

chair pad, small transfer chair, double hinges for the doorways for more

width (we have a TINY house with narrow doorways), second commode, over bed

table, body props for turning, posey boots to prevent heel sores, different

diapers for nighttime or days she's unable to get up. I am seeing that

with these new major phases comes a whole new list of equipment needs.

-Dorothy