Caregiver frustration, anger, guilt...

[newbie]

Reader beware - this is blunt. My husband was diagnosed with bulbar onset ALS in May 08. He started slurring his speech in Mar 07 and, after ruling out stroke, doctors figured it was the progression of his Multiple Sclerosis (which he was diagnosed with in 2000). Yes, both M.S. and A.L.S. His total loss of speech in May 08 has been davastating, for both of us. He initially started using a loaner speech device, but has quit even trying to use it. When we leave the house for an appt, etc., he rarely takes paper and a pen though I have bought an endless supply of sticky notes and notepads and have them laying everywhere. He seems to expect everyone else to adapt to his problem, we have to guess or supply pen and paper, he won't be responsible for that. He was never a selfish person, but he has become very self focused. I am supposed to get his pantomime, guess and guess until he gives me the "thumbs up". He has a dry erase board by his chair but doesn't use it unless I insist. He won't shower but about once per week and then only because I insist. He refused to have the surgery that would end the choking episodes (one occurred in front of his Dr. that deeply shocked the man - he said he couldn't believe that we had been going through this and had not called). I've had to heimlich him 4 times and still he won't have the surgery. My husband has been terribly constipated, to the point of literal impaction that has to be manually dug out. I've had to glove up and do that twice for him and it is a 2 hr process; never a thanks or sorry you had to do that. He's pried the poop out himself a couple of times too. I have to clean the bathroom wall, floor, counter, sink, toilet, shower, towels, bedsheets, there is shit everywhere. He's been on a laxative every night for 2 weeks just to get things predictible and tonight he messed his pants. I'm afraid to check the condition of the bathroom. He has not been able to kiss me since Mar, he never thinks to hug me anymore, he drools all the time and on everything. Yes, I've kissed him for years, but how would you like it if you saw someone spit in your food? He can't help it, and didn't ask for it, I know. The carpet is trashed from drooling and gagging and spitting out food. My feet stick to the kitchen floor every night until I damp mop up the spills and drools. I hear him cough and choke incessantly all day long, and it was panic mode the first 50 times...but this has been going on for 9 months, every day. I'm just sick to death of it. Sometimes I wish God would take one of us now, and I'd just as soon it be me. I couldn't take the guilt of deserting him and yet I don't see how I can continue to cope as this progresses. I've taken off buttons and sewn on velcro so he can continue to dress himself, we have machinery and supplies all over the house, walkers, crutches, I help him with gravity feeds and liquid medications through his PEG tube every night. He sleeps 12+ hr/day and I often hook up a gravity feed while he is sleeping. I have to handle every problem that comes up when you have a house and a car, handle the paperwork for his sickleave every month, handle all the medical, appts, medicines, insurance, fight to get salivary botox injections paid for - which did not work. If I don't set up his pill organizer, who knows what he would take as he can't seem to get it straight. He is awake 10-12 hrs/day and spends the entire day channel surfing (small house), is not interested in texting anyone or emailing anyone - both of which he used to do. I fear FTD has set in. My God! He was a handsome, vital man who was everyone's friend, cared deeply about his family and friends, worked hard all his life, honest, reliable and attacked everything about life with gusto. I miss him, and hate myself for the feelings I have. I try to remember the fun times we had and the trips we've taken, and how sweet he used to be (umm, sometimes stubborn too). There are many days I pray just to get through the next 15 minutes with a kind voice and manner. We have no family in the area to help. I'm out of ideas, patience, hope. I just want it to be over.

 

[brendapals]

newbie,
Bless you my dear, you truly are a saint! Is there a church you belong to, that might have some retired, or active, nurse aides or nurses that can give you a much needed break? Or maybe try the local high school, see if they have a health services class, give them your info, and some of the students might come and help to gain the knowledge. Same way if you have a community college, or other college, that has nursing classes.
This damn disease is such a monster in so many ways, my heart goes out to you. Your husband is very fortunate that you are there for him, but you really need to get some help with him.
Right now it's early in the day, I'm sure there will be folks on here with more ideas for you. Please know that my prayers are with you and your husband, and keep us posted,
-brenda

 

[brooksea]

sorry for your frustrations.

If your husband has been seen at an ALS Clinic, I would suggest you call the social worker and ask her about Hospice. I know our local clinic has seen similar situations as yours and have intervened. As a matter of fact on our last visit there was a man in a wheelchair that could no longer speak and you could tell he had a very angry aura. His wife was complaining loudly about their situation and it sounded a lot like what you are describing. (not following doctors advice in using BiPap, speech augmentation, and worse, etc...) The clinic helped her find a place for her husband to go where he could be cared for. I don't know if it was permanent or just respite care.

Also, have you registered with the ALS Association? They could perhaps be of assistance. I was told by a lady from the ALSA that they had to send someone out to a pALS home because he was throwing dishes at his wife, as she was not "doing things the way he wanted them done!"

Do you have an "Area Aging Agency" that evaluates the elderly's needs and can provide help in certain situations? I was told that our local agency could perhaps help if one was not considered elderly but disabled.

I hope you will let us know if any of the ideas are helpful to you. Please keep us informed on how you are coping with this. I really believe you need at least respite. Perhaps your husband would then realize what a horses batooty he is being!

(If you do suspect dementia, you may want to have him evaluated at the clinic.)

 

[brooksea]

Evergreen Chapter ALSA
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19110 66th Ave S
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Kent, WA 98032
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425-656-1649 (fax)
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Area Agency on Aging
3000 Rockefeller Ave
Everett, WA 98201
(425) 388-7377

 

[califsand]

My father went through the same exact type of behavior and it was very difficult to continue to like him during that part of his illness. I think he finally became reliant on using a pen & paper after I broke down crying in frustration from not being able to understand him anymore and him being angry at me for it. I don't cry often and he was affected by that.

Maybe it would help to have a consultant from the Eye Response Technology folks to come see him and show him their ERICA system. I did a lot of research on this technology and am impressed. There are many PALS who use it successfully. It can read your eye movements and translate them to words or actions on a computer, speaking for you or letting you browse the net, sent emails, IM's, etc. It can even be set up so he can turn off lights and open doors with just his eyes. The computer can be attached to lots of places, like a desk, wheelchair or near his favorite recliner, and is easily portable when you go places. They are not as expensive as you'd expect because the MDA (Muscular Dystrophy Association) will pay for about $5000 towards a communication device and then medicare also provides funding towards it. The company that sells the system knows how to get funding and can help take care of all of that. You can look them up online and at least research if you think it will help him. If you want, I have info I can email you about this from my research.

My Dad lost his speech towards the beginning of his illness and we got him a computer and several pads of paper. He was resistant at first but finally learned the computer and used both to talk to us. He never did let me get someone out here about the eye response technology and that made me pretty sad because it works long after you can no longer write, type or even move your hands. He was bedbound for his last 8 months and couldn't communicate any more which really was hard.

My dad drooled like crazy and had towels placed strategically all over the house. He tried lots of things to stop it or slow it down and the only thing that helped was a patch they put behind his ear. It has side effects though that make you naseated... or did for him. He wouldn't shower for long stretches of time until we realized it was because he needed help and felt too proud to ask for it. My brother began showering him 3 times a week and that problem was solved. Maybe your husband needs help from someone who can catch him if he is falling? Dad had fallen and he was just afraid to keep getting hurt.

My Dad also went through the choking and wanted to eat even after he got the PEG. I slowly put my foot down and eventually he stopped eating orally, and stopped choking. That was a relief because it is REALLY stressful to watch. Constipation was a major issue too and after trying many things the Dr's prescribed, we learned that worked best for him was a dose of milk of magnesia in his tube with his formula. It usually loosened up his bowels in a couple of hours. I just made sure to be nearby or yes, it would end up in his pants. We got him a bedside commode so it was conveniently RIGHT THERE. Our experience was that it did work fairly well, maybe it is something to try? Manually removing feces is not something I would do, no matter how much I love someone... and you guys shouldn't do that either. An enema would be better... or smooth move tea given to him 6-8 hours before you want him to go.

All of these things going on with your husband really do hint at depression, and who could blame him for feeling that way? However, it is hurting you both (depression can be really contagious if you spend so much time together) and solutions need to be created. You said that he was vibrant and a friend to everyone so maybe it is time to start recruiting friends to come over and see him, maybe some will even be capable of helping out and giving you a break. Maybe he has some good male friends who can come help him shower... or come take him out and lift his spirits. People have trouble knowing how to act and what to say to a friend who is ill and has trouble communicating but maybe you can help them see that it is best for him to be treated as normal as possible. He may not be the best communicator right now with his speech issues and the lack of emailing and texting may be because his coordination isn't working very well... but they can talk to him and engage him, maybe even motivate him to want to use a communication device so he can interact easier.

You also may be eligible for hospice and/or visiting nurses to come in and give you breaks or extra help. I had two agencies that came in... hospice for the medical care and visiting nurses to dadsit so I could take a break. It was good to have that but I didn't seek it out until I felt how you sound. Later, when my Dad's illness progressed to where he couldn't even use the walker without falling, he moved into a Hospice house and they cared for him during the last year of his illness. Look into the resources and do what you can to get the help you need, it will alleviate some of the stress. What you are feeling right now is a totally normal response to having your world turned upside down, your husband being stubborn and probably depressed, and it all falling on your shoulders. We have an instict to either fight or run away... the fantasy is about running away but the reality is that you'll stay and fight because you KNOW it can be better than this. Use that emotion to push you through this rough time and into the next, which WILL be smoother.

Oh and don't ever be afraid to come in here and be blunt. It is a safe place to vent your feelings and when you're open, other people who are afraid to be end up reading it and feeling so much less alone. You'll find people here that understand EXACTLY what you're going through and having that sure helps!

Take care,

Sandy

 

[patricia1]

Your Husband Sounds Depressed And You Sound Burnth Out And Angry
You Need To Ask For Help
He Is The Victim Not You
You Cant Be Of Help To Him The Way Yo Sound

Pat 1

 

[MtPockets]

Newbie, I feel for you and the situation your are in with your husband.
Just a thought, you might consider making an appointment for yourself with your Family Doctor, and print off a copy of your post. Give it to him to read. Tell him or her you need help NOW. Do not take no for an answer.
All is not lost; there are people out there to help you, but sometimes it is the squeaky wheel that gets heard.
I will pray for you to find help soon for both of you.

 

[Zaphoon]

Newbie,

You have my deepest sympathy. Your situation isn't just tough, its horrible! Bless you for the "crap" you've gone through so far. I just can't imagine how you have managed to hold up this long.

You seriously need a break and some empathetic intervention NOW! I'm sorry your husband seems not to appreciate the tremendous care you are giving him and I'd really like to believe that this is related to his diseases.

Please search the local community (as suggested above) for help.

Zaphoon

 

[CindyM]

Please also visit http://www.sharethecare.org/ to see if there are any tips you can use. Nobody should go at this all alone. Feel free to write often and let us know how you are doing! Cordially, CIndy

 

[joelc]

Reader beware - this is blunt. I too feel the need to be blunt - This may sound harsh but he needs a good smack across his head, this is totally unacceptable behavior and should not be allowed.

But first find out if he needs medication for emotional lability or FTD. If he doesn't then make it perfectly clear to him you are no longer going to put up with this type of behavior, he sounds like a spoiled child and needs a good spanking. Bless you for putting up with this for so long but it is time to stop!

Lots of good advice has already been given, please seriously consider what they have shared.

I have known a few PALS that were just like your husband and once their wives (caregivers) gave them a severe tune-up things turned around and were much better. Don't be afraid to tell him his behavior is unacceptable.

Wishing you the best - God Bless!

 

[Zaphoon]

Joel,

I agree totally! Well put!

Zaphoon

 

[brooksea]

Thanks Joel for giving your perspective. It really helps when you or MT Pockets and other pALS chime in on any caregiver problem.

It helps to see things from a different view.

 

[clewbcg]

Caregivers are also victims of ALS

Newbie, as a fellow caregiver. I know how you are feeling. It is so hard to make the transition to caregiver especially when your pals is making things even harder for you. I am very lucky that my husband's spirits have remained strong even though his symptons have gotten so much worse in the last few months. However, I still often feel that desperate feeling that you describe and I have also wished that I could somehow escape-even through death. We both know that we will never leave our pals, and I have also taken advantage of this forum to let loose with my frustration and fear. People here are very understanding and helpful. I do want to say though that you are also the victim of this disease and deserve as much help as your pals. I hope you get some respite.

 

[CindyM]

One former CAL used to leave the room when her PAL was verbally abusive to her. She did not stay away long, but she told him very nicely that she was doing the best she could. Then she announced she was going to leave him alone for a bit until he calmed down. But this particular CAL suspected her PAL was taking all his frustrations out on her. He never treated his Mom or their children like he did his main caregiver.

None of this is easy, to be sure. I wish I had a magic wand!

 

[Icanmanz]

newbie, God bless you dear. You are truly a saint. I felt oh soooooo bad when I read your post. I felt bad for you. So sorry to hear of the nightmare you are enduring. The pain that you are enduring over your husband's illness is bad enough. How old are you guys, if you don't mind. This is waaaay too much. His behavior is really bad, and I bet it breaks your heart because of the way he is treating you. It's true that he is sick, but by God, he should not be treating you like this. Has he always been like this towards you? I am sorry to tell you this dear, but it sounds like he has been a very demanding person all along. No dear, you do not deserve to be treated like this. When and how can you eat, after cleaning all the mess? I am so sorry for asking you this! Get a hold of Als or hospice and SCREAM for help, dear! I pray to God things turn around for you. I will be praying for your husband, too, so he can be more compassionate towards you. What your husband needs is a wife like delb's. He should not be taking out his frustration on you. May God bless you both! Please keep us posted, and please do not take my post like an insult, we are trying to help.

Irma