Status
Not open for further replies.

browningle

New member
Joined
Jan 11, 2009
Messages
2
Reason
CALS
Country
US
State
AL
City
Briwmingham
Hi everyone. Let me first say that I have seen the pain and frustration caregivers go through everyday and I admire the strength all of you have to make it through the daily stuggle that is inevitable with ALS.
I am a social worker by education, but was working temporarily, or so I thought, for a childcare agency when I was asked to work with a family full time (In November of 2004). The mother had been diagnosed with ALS (around 2000) , and 3 years later was diagnosed with Lyme disease. It is really unknown if one of the diagnosis was false or if the late stage lyme led to ALS but either way, the end was the same.
When I began working with the family, I was told she had been diagnosed with Lyme and would eventually improve but at that time needed help with daily activities. When I started the job, she was confined to a wheelchair, although we could secure her hands to a walker (using ace bandages) and she did some exercises with the walker daily. She had severe problems with speech and swallowing, although she could feed herself once the food was prepared and cut into bite size pieces.
All this is really beside the point. I worked with her for almost 4 years. While she was being treated for Lyme, there was very little improvement despite many many different trial medications and almost daily physical therapy. However there was also very little deterioration from the condition she was in when I first began working with her.
Around the middle of last year, her husband and I began to notice that her neck muscles seemed to be getting weaker. She could not hold her head up well when getting in bed and when I would help her with lotion and makeup on her face, her head often slowly fell back, although she didnt have a problem holding her head up when just sitting around.
In late August of 2008 she developed what we thought was a bad cold. She began to have much more difficulty swallowing, which we thought was caused by the 'cold'. After a couple of days of not being able to eat, her husband took her to the hospital. It was decided there that she had lost her ability to swallow... as a normal progression of ALS.... so they took her off fluids and nutrition and basically waited for her to die... which took 16 days after being taken off all IV's except pain meds.
So my first question is: I know ALS progression is different in everyone, but is it 'normal' to have very minimal deterioration for 3 years and then to all of a sudden lose the ability to swallow? Because not long before she had started to lose the ability to swallow, she started taking a new medication which I later found out has been known to cause difficulty in swallowing.
My next question is: Is there anyone here who is a non-family care-giver? Like I said before, I admire the strength one has to have to take care of a loved one, but I have had a very hard time getting past her death. Her family has been wonderful and we have made ourselves available to each other for comfort but I feel like the are mourning a different person than I am. They knew her before she was ill but I didnt. I knew a very angry, frustrated, scared woman who was fighting every day to get better. I know that her family's pain is so much greater than mine, but her and I had become very close friends This job was supposed to be temporary, I did not go into it knowing I would lose someone I had gown close to. Being a social worker makes me even crazier in dealing with this because I've been through the classes on death and dying and I should be able to get through this, but it seems I am just stuck in this angry phase I can't seem to pull myself out of.
I am sorry this post is so long, I guess it is partly because I want to explain as much of the situation as possible, and partly because I just need to unload.
Thank you
 

kylisa

Distinguished member
Joined
Feb 11, 2008
Messages
195
Reason
Lost a loved one
Country
US
State
KY
City
Stanford
My mother's swallowing issues began in March or April of 2008. They became progressively worse up until Oct 2008. She quit eating and drinking then. She had had the peg installed earlier, upon the recommendation of the ALS Clinic. She has progressed to being bedridden. We do help her get on and off the bedside potty. I spoke with her hospice nurse the other day and we discussed how good her vital signs are. The nurse advised that we would likely not see a major change in her vital signs until the very end. She hinted that we might not see changes at all because she may go to sleep and not wake up. Apparently, the issue is at what point her breathing muscles quit. My mother has opted not to be trached. Even though her fvc is low, her oxygen level is good at the present time. My family has experienced this terrible disease with her every step of the way. She has been remarkable in how she has reacted to the progression.

If you had told me that I was going to lose my mother 3 years ago, I would have been devastated. Now, after dealing with this, I have accepted that I will lose her and though it is hard to fathom her being gone, it is terrible to watch her waste away too.

I have accepted the fact that she will be better off when she passes away. I cannot tell you for sure how I will react when that moment comes. I resigned myself to be strong so we can get her through this. I occassionally break down and cry but then I go on.

I hope you can find yourself some therapy. I hope you can accept the help. It takes a lot out of a person to deal with ALS whether you are a family member or not.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
I'm very sorry for your loss. I hope your brave spirit will heal in time.

You must know that you brought joy and happiness to a pALS in need.
 

Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
I don't think there is a "normal" progression other than the expectation of progressive weakness. Timing, pace, etc., can be based on so many factors, and everyone is different. It sounds like she might have decided that she was ready to be done with the disease if she went completely off of any nutritional nourishment, regardless of whether the source of her inability to swallow was due to the disease itself or to a medication.

This is just an opinion, but what you might be experiencing is the "Why? How?" phase of coming to terms with ALS. It's such a difficult disease to understand, and it takes time to find answers to all the questions that such an unpredictable disease can raise. You have come to the right place for answers, though, as there are so many helpful people on this forum. The other thing to keep in mind with regard to your reaction versus the family's is that they have probably been grieving for quite some time (anticipatory grief), whereas most of yours is happening after the fact.

Oh, and in answer to your other question, I am personally a family caregiver. We have non-family nurses who assist with my mother's care, and sometimes I find that they have a more difficult time dealing with my mother's crises than I do...but Mom and I have been dealing with her disease for a lot longer than the nurses have. We worry about them becoming too attached to her, though, and that's especially evident when Mom has to go to the hospital. We do consider them to be friends, but I can't care for my mother *and* them.

I hope that you will continue to learn about ALS, and maybe that will point you toward something important career-wise.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
You spent 4 years of your life caring (big, big word with a lot of implications) for a very sick woman. During that time, you created a very strong bond and affection, obviously. You seem frustrated on a few levels. One level being that you were not prepared for something as long term ending in a terminal state. You didn't go into this situation of "care" giving with the knowledge it would wind up as it did.

The next level of frustration probably has to deal with what seemed a stable situation for so long taking a sudden and drastic turn for the worse when this dear lady could no longer swallow. You witnessed a rapid decline you were not prepared for.

One more level is watching this poor woman go without any nurishment for over a 2 week period. You, as a care giver, had no say in this decision so I would release any feelings of guilt, anger or resentment you may still have.

What you went through was a real eye opener and there is not a classroom on earth that could have fully prepared you for what you've gone through.

You helped make this dear lady's life more tolerable and pleasant in those last four years. You were a comfort and easer of discomfort. You made a huge difference.

If you are ever in a hospice situation in the future, you are now more prepared but my guess is, it will never be easy in the end.

I hope this helps you. These are just my thoughts and I take full responsibility for them.

Zaphoon
 

browningle

New member
Joined
Jan 11, 2009
Messages
2
Reason
CALS
Country
US
State
AL
City
Briwmingham
Thank you all for your input.
Thank you Zaphoon for summing up the things in my head better than I could. Recognizing the causes of my thoughts and feelings about this whole situation has already helped me move towards dealing with them.
Thank you again
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
caregivers

Dear Brown:

After reading your post it made me smile because we have a caregiver through Hospice and he and my husband are such good friends! He comes over for the football games and watches with him and truly cares for my husband. We feel he is part of our family.

Since my husband's disease, his very close neighbors seem to avoid coming over (my husband feels this way) but his Aide is there for his football game companion and also their conversations together are like he has been a lifetime friend. We love him!

A caregivers, or Aide or nurse to an ALS patient that is not a family member, nor a family friend, and cares the way you did for your friend is a wonderful gift.

You are a very special person and thank you for being her dear friend. :)
 

PJCARGIVER

New member
Joined
Jan 19, 2009
Messages
1
Reason
CALS
Country
US
State
WA
City
MOSES LKAE
Non-member Caregiver

I have a client who has ALS. We are in the stage of only being able to go from his chair to the port a pot, to his bed all in the living room. A very proud man does not want to prolong his life. So no oxygen, so forth. Still can talk but only a little while he runs out of breath. I need ideas on how to make him comfortable but not mother him.:-D
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
You are so right to try to help him maintain his dignity. I "mother" Alzheimer's patients who have regressed to early childhood, and I notice that professional caregivers avoid this. But a PAL still has all his or her mental capabilities, something that is easy to forget if they cannot communicate.

Good for you for setting this goal!
 
Status
Not open for further replies.
Top