Residential Care for ALS patient? When?!

Status
Not open for further replies.

KellyC306

New member
Joined
Jul 30, 2013
Messages
2
Reason
CALS
Diagnosis
12/2012
Country
US
State
Oregon
City
Portland
Friends:

I am new to this forum, so will jump in with my pressing question: what experience have any of you had with having to make a hard decision to seek residential care for an ALS patient?

Background: my wife was diagnosed at Christmas, 2012, and the disease has come on very fast and aggressively. As I write this, the doctors tell us that we have perhaps 6-9 months left. She has already lost her ability to walk, to turn over in bed, to feed herself, we can only understand her about half the time, etc etc. I agonize with her, and for her, but realize there is nothing I can do. I accepted all that, fairly quickly, even though I hated it.

Now, I had images of her disease progressing here, with her at home, surrounded by all those she loves and who love her so much. She is so loveable and lovely, normally. But...

Over the last 60 days, to my great distress, the docs have also told us that she has been hit hard with "front-temporal dementia" which, for those of you who may not know, apparently hits some 10-30% of ALS patients so hard that it changes personality. My normally serene and gentle wife has become full of rage and panic, and is often cruel and unkind to those around her, including our child--whom she loves more than anything-- but seems only later aware of what has happened. She tells me that she has no control over these outbursts. That fact, plus the reality that she is not sleeping well--either because of the complicated cocktail of meds, including anti-psychotics, that she is taking, or something else--means that our lives here are hell. I have to work, and she cannot be left alone, and friends are starting to stay away, so as of now we have professional caregivers coming in about 15 hours a day now. This is very expensive, but, more to the point, still doesn't make any of it tolerable. The anti-psychotics don't seem to be working, no matter how they mix them around, add to, etc.

Recently, some friends--who know at least a little about ALS and a lot about health care generally--are suggesting that we may have to look at residential care, given how bad things are.

Anyone have any experience with this? I'm heartbroken to even speak of it, but I don't see many options.

Thanks,

K.
 

patgayle

Active member
Joined
Sep 20, 2012
Messages
60
Reason
Lost a loved one
Diagnosis
05/2012
Country
JAM
State
Westmoreland
City
Negril
Your experience with your wife is like a mirror image of my husband and I. My husband was diagnosed May of 2012 and is now in a 'nursing home' while I am taking a desperately needed holiday with my family in Canada, my husband and I live in Jamaica. These are the most difficult decisions I have ever made and will have to make, he now desperately wants to come home when I return. I don't know if I can manage it again, the temper/mood swings, the constipation, the constant moving from chair to bed and back again, caregivers in and out of our tiny house 18 hours a day-everyday and last of all the enormous cost. Emotionally I am a wreck when I have to deal with it daily and when I think of going back to the grind of managing this ALS life I shudder. When does how you feel become more of a priority than how the person with ALS is managing. Ever? I don't know, it is an individual thing. All I know is that you will be here after your wife has gone so you must look after yourself now.

They say that you should find out as much as you can - make the decision- then forget about it - you will never know for sure if it was right or wrong - just know that you did the best you could.
 

KellyC306

New member
Joined
Jul 30, 2013
Messages
2
Reason
CALS
Diagnosis
12/2012
Country
US
State
Oregon
City
Portland
PatGayle: Thanks for this honest response. It is good to know that I am not alone in this. Take good care of yourself on your vacation.

K
 

sh789

Member
Joined
Jul 10, 2013
Messages
16
Reason
CALS
Country
US
State
New York
City
Blasdell
We are in the same decision making process with my mother- in-law. Right now, according to hospice, she qualifies for a nursing home as she is unable to to care for herself in any way due to loss of arm function, uses a peg tube, relies on oxygen, and has recently started using a wheelchair. I asked hospice when do you know when the time has come and they said it's an individual decision based on the caregivers- basically- how much are we able to handle before it just becomes too much. We are nearing that point. I seem to be having the hardest time with it because I am with her the most. I feel truly guilty about having her move to a nursing home but it's getting to the point that the care she needs is almost more than I give. I don't want her to feel abandoned, yet sometimes she isn't is coherent or fully aware of her surroundings so as this disease progresses I don't know how aware she will be of what is happening. For her sake, I hope not much. I empathize with the decision you are going to make- but whatever you decide, there is no right or wrong. We all have to just do the best we can.
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
I have two suggestions for you. First is that if you haven't already, be sure to scroll down to the FTD forum here. There is a LOT of information, links, personal stories, etc that could help you. Second... if she is still reasonably mobile, look in your area for a dementia-specific adult daycare. A few hours off a few days a week will do you both a world of good!
 

bemindful

Active member
Joined
Jun 25, 2013
Messages
59
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
Missouri
City
St. Louis
Kelly,

Several months ago, my mom decided she needed to go into skilled nursing because she determined herself that she needed 24 hour care. I agreed. We moved her to a nursing home where she hated it. She was miserable and depressed and they had no idea how to care for a PALS. She ended up going to the hospital after not having a BM for two weeks (even though they had it 'on the books' that she had). She spent 4 days at the hospital and then we moved her to another nursing home. There she sat, without someone answering her call light for suction or for the bathroom and they looked at her like she was an idiot when she would call them. They didn't understand that her mind is well (aside from the bit of FTD) and that if they handed her the communication device she would answer them when they stood in front of her and asked "What do you need?! What?!"
She cried all of the time. I finally agreed that she needed to go home. Well..........there her progression became pretty rapid. I was caring for her 24/7, many days with very little sleep and my life just stopped. That includes making money or paying bills or eating, etc. I mean, I was going crazy. I was losing it. I finally after about 6 weeks brought up the discussion with her again. I said that I could not continue. As her needs outgrew my ability to care for her, we had a few incidents: pressure sores, dispensing Morphine and her hallucinating, digestion issues with her feeding tube. The 'nursing care' part of it just became more than I really have the how-to for, despite the fact that she is also with Hospice. She agreed finally to try another skilled nursing center.
I found a small one, very near my home and I talked to the staff about her. The Director of Nursing came to our house to visit with my mom before she accepted her as a candidate. Mom has been there for one week now and things are going pretty well. The ALS Association is going to be doing an in-service for the staff. Most of the staff are kind and pretty patient. Things are not perfect. But I am there EVERY day at least for a couple of hours and sometimes twice a day. My brother and sister-in-law stop by too. I monitor the meds she is given and I am still pretty busy. But at least I get some sleep at night and I can get some work in as well. Mom's whole attitude has changed. I think the feeling that she is safe and that she is not draining me has made her a little more calm. The change in her was dramatic. I know she would like me to be there all of the time, but the time we have together is great. She really looks forward to our end of the day time together when we turn out the lights, I lay next to her in her lift chair and we watch the cooking channel until she falls asleep.
It was a very hard decision. You must absolutely do your homework before considering any skilled nursing center and get them educated and on board with a very high-needs resident. Do not be swayed by how it looks. Your PALS won't see any of the interior decorating anyway and it is only for the family, not for the residents. All of them are going to be super nice to you when you are just visiting to check it out. Speak to other families that have people there. Ask them how long their family members have been there and would they recommend it for your wife. Let them honestly know how high needs she is.
Get hospice involved!
 

ashleyking

New member
Joined
Aug 21, 2013
Messages
1
Reason
Loved one DX
Country
US
State
oregon
City
scappoose
My dad has had ALS for 7 years now and has gone down hill very fast the last couple months. We have moved him into a care facility and I know he is absolutely miserable. My step mom and I cant be there with him 24 hrs a day and I feel so guilty everytime I leave. I keep thinking what I can do to make him happy? Is moving him back home an option with the amount of 24 hr a day care he needs? Anyone have any suggustions? Thanks!
 
Status
Not open for further replies.
Top