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Sep 21, 2007
sant barbara
Hi, I'm the primary caregiver for my father who has ALS. He was diagnosed in 2004 and lived on his own until January of this year, when he moved in with me. I've been closest to him during his illness, as his oldest daughter he has shared the brunt of his illness with me. Although he has 4 other children (3 boys older than me and my younger sister) there are only 2 of us involved in his care. One of my brothers comes by 3 times a week and showers him. Other than that, I have a caregiver come in during the first part of the day and a cousin who helps out half day on Saturdays. The rest of the time I am alone with him.

A year ago he plotted his suicide and announced to the family he was going to do it. He had us all spend the majority of a weekend with him and then when the time came for him to follow through, he changed his mind. Said he couldn't leave all of us that way because there is so much love for him in the family. It was a headtrip, we all had finally accepted his decision and forced ourselves to be supportive of him making the choice. When he didn't follow through is when the real stress began. He finally chose to allow help, but only from me for a while. Eventually he allowed my brother to start showering him. He needed help so badly that I would go to his house every day after working full time and I would feed him, change him, do his laundry, clean up his house, tuck him in bed, etc. Then I would come home and go to bed. I wasn't eating and my husband & stepkids weren't doing their part at home. I came home to a filthy house, kids unfed (at 8pm on school nights), my dogs not fed and them all wanting my attention.

My fathers illness progressed, he could no longer swallow ANYTHING and I talked him into getting a feeding tube. He was admitted to the hospital because he was dehydrated, suffereing malnutrition and had almost no strength. The Dr. advised he had about 2 months to live. I had my husband & the kids move out, moved my father in and took family leave from work. Hospice came by regularly and over the next 3 months we were able to put over 20 pounds of weight back on my dad, his mobility increased and for the first time since being diagnosed with ALS, he had a will to live. After 3 months I returned to work and they began to harrass me, writing me up and put me on probation. They were NOT happy that my father did not die during my time off, as the Dr. had predicted. In fact, my father stabilized to a point where Hospice discharged him. Working, caring for my father, attending online school full time and the recent start up of my own company took it's toll on me, I lost my job I had been at for the past 7 years. Now I'm home, trying to get my own business going, attending school and caring for my father. Most of the time we are okay, we have a good system and I am able to understand most of what he wants. He lost his speech FIRST, before the other physical symptoms of ALS set in so we have been operating for a long time now with no speech.

Anyway, I've never looked into caregiver support before and I am only doing it now because I feel that the end is nearing. He is falling more often. He refuses to use a wheelchair in the house, a walker is the most he will do and that took a long time to get us that far. Soon, he won't be able to walk anymore and his ability to communicate may also fail around the same time. I know this and know that I can't prevent it but his refusal to allow the wheelchair use, or use of ANY OTHER device, is aggravating. I am losing patience with him and don't know how much more I can take. The middle of the night falls when he uses his bedside commode (he REFUSES to wear a diaper and will NOT leave on the condom catheter) are taking their toll on me. I am so tired in every way and it feels like his illness and attitude are ruining my life.

Any suggestions on how to keep my sanity would be helpful. Most of the time I think I am strong but I am really starting to resent him for putting me into this position. I hate to feel that way and most people have no clue but I have a feeling that others here will understand my feelings and not judge me. I think that my feelings are normal...please tell me I'm right! I would love to hear how others have coped with these feelings.

Hi califsand. Welcome to the forum. I am so sorry life has thrown you this curve ball. Seems to me a lot of people would have cried "uncle" long before this and begged for help in any form. Too bad hospice has declared he no longer needs services. If he's deteriorated since then, maybe they can come back in?

Whatever form help come in; I hope it comes soon and I hope you can get Dad to accept it. You deserve at least this. Cindy

I am also new to this site but the last few nights I have learned alot and received a lot of help.
I cannot give you any solutions but I can say as the caregiver of my 40yr fiance with als that I completly understand what you are saying as I have had the very same fights with being able to use lifts, bedpans, external catheters, attends (diapers) as you have and it is so frustrating because these things also releive some stress and pressure from you. He is making caring for him very hard just like my fiance does to me which makes you not want to do it anymore right? Because you would think they would want to help you as much as possible and to relieve as much stress as possible for you but my fiance does not think that way. He thinks he wants things the way he wants them and does not care how hard it is on me.....and beleive me I have told him...does no good.
My fiance is so angry and it sounds like maybe your Dad is on his way to being the same way .....beleive me I hope not but what you wrote is so similar you would not beleive.
I pray for you and please feel free to write me anytime.

It sounds as if you are doing more than any one person should have to do for your father! Can you get more support from you r other siblings?

Unfortunately the arms of ALS are long and reach far, and depending on the PALS, this can be a positive or a negative experience. I'm very sorry you had to move your immediate family out. I can't imagine how you cope. You can't be the only one feeling resentment towards your father in this situation.

Don't feel guilty. We know where you're coming from.

Can you speak to the ALS Assoc Social Worker about this? Our association and the ALS clinic have been very helpful. My husband is not as far along in the illness as your dad, so I haven't had to call on them for the kind of assistance you need yet. But I have used the help of the Social Worker at the clinic on another matter and she jumped on it immediately and got results. Also the ALS Assoc rep came to our house to asses our home and see what we needed.

Hang in there!
Thanks Cindy! I have had intermittant help and Hospice will be there for him again, when they feel he has deteriorated enough to need his services. I think that I will be calling them again within the next month, maybe sooner. The thing with Hospice is that they want to overmedicate him and they like to take control of the situation, they step on my toes. They send a social worker out weekly and spend an hour telling me what I am doing wrong. However, my actions are dictated by my father and his specific needs/demands. When he can no longer walk I know that I will not be able to have him here. He is very heavy and I will not be able to manipulate his body on my own.

Unfortunately, things have to get worse for him before they get better for me. It sucks so badly to be in this position!
Hi Stacey,

My father actually seems to finally be getting past the angry stage, he has been an angry man for the past 4 years and has slowly gotten nicer! It's hard and believe it or not, most of the time I am excellent with him. We get along great, about 90% of the time. This week has been especially hard because his falling has increased, he's not sleeping and he is being really cranky. He is having more trouble responding to yes or no questions and as I mentioned, he refuses to use a speaking machine or even a picture board. My cousin just came to take him on his weekly outing and my father refused to be put into the wheelchair until they were out of the house. This means that they had to hold him up while he walked outside and DOWN the stairs, because he was too stubborn & proud to let them carry him. Took him 15 minutes to get down 2 steps!
Thanks CJ!

"It sounds as if you are doing more than any one person should have to do for your father! Can you get more support from you r other siblings?"

Unfortunately my father has pushed my siblings away, except for ONE brother, and that brother comes after work 3 times a week and spends 2 hours each time showering him. On weekends they are ALL too busy... getting their help is something I have begged & battled for but seldom gotten. Then when I DO get them here, he doesn't let them do anything.

"Don't feel guilty. We know where you're coming from."

The guilt hits hard if I lose patience or during those times where I wish that this was over. I wish it for him but also for myself. I think lots of people feel that way but don't want to admit it, because it feels terrible to admit. Human nature really kicks in during a crisis, doesn't it? What sucks is that my siblings will be so sad and heartbroken when Dad passes away, and I will too but I will also feel relief and freedom. I never thought I would feel freedom at the loss of my father, he has always been my hero and it saddens me to know that is how I'll feel.

You suggested talking to an ALS social worker. They have good suggestions but without my fathers' cooperation, most ideas cannot be implemented. Our house is pretty safe and has been evaluated by a physical therapist and occupational therapist, we took every suggestion for safety and implemented them. Fortunately during his falls he seldom suffers and injury...he has a way of rolling down onto his back and that helps a lot.

Another organization that I have found to be extremely helpful is MDA. They have a HUGE program for folks with ALS and can provide up to $5000 for a scooter or electric wheelchair, also, they provide money for a communication device. They also usually have a stocked loan closet for these things and they are VERY eager to help.

Unfortunately his disease has been a large part of my life for a long time. I was handling it really well and never came to a support group before because my emotions were under control and I'm pretty resourceful. It's getting harder on me mentally now, probably because of how long I've been taking care of him. I keep feeling like he is nearing the end and it breaks my heart, freaks me out but at the same time, I want that for him. He was always such a strong man, so alive, full of energy and full of stories. He's lost so much of himself and though he still can be very lively at times, he's a shell. I cannot imagine him immobile in a bed, unable to communicate... but I feel it coming soon and I'm scared.

I talked to one brother last night and vented to him and he said "maybe it's time WE decide to put him in a home"... I told him that it's nobody's decision but MINE. Seriously though, what right do THEY have to decide, if they are not involved in his care? Only one brother out of my three brothers helps... and his opinion matters to me but it is still MY decision. What makes them think that they can stay away and then unite when they think I can no longer handle it? I am nearing that point but I'll know it when I get there. Fortunately I have power of attorney as well as guardianship, so nobody can take the decision from me.

Sorry for rambling on and on, I'm just having a hard week! I was up with him 3 times last night for toileting and I'm wiped out.

I'll hang in there as long as I can, and maybe even a little beyond that. We don't get repeats in this life and I want to have NO regrets about how I dealt with my father...

Thanks for all of your words of wisdom and kind thoughts. I do appreciate it and I'll probably come here more frequently, even if just to vent! :)
Vent anytime you need to, califsand! :) That's one of the reasons we are here! I had another thought: does your state offer in-home personal care for a few hours a week? I know it would be a battle getting Dad to accept this but what are his choices? Most people find that they need help since it is too much 24/7 and most people want to keep their lived ones at home.

Of course that would mean both of you would have to give up some control over the is never easy having strangers in your home doing things the way they decide to do them. But the trade-off is that you get time to go out with a friend, see a movie, go to the mall...And you return refreshed and re-energized. At least in theory!:-D

Cordially, Cindy
Hi Cindy, I used the in home care option months ago... they have a grant that allows you 48 hours and it's a one time deal. Also, the grant cannot be used in conjunction with in home services where you get paid for caring for the patient with ALS. I do have that and because the nights are so hard with him, I have a caregiver every weekday from 7:30-12:30...this gives me a chance to sleep in and also do some work on my business I am starting up. I try to do my errands during that time.

The thing is, he is getting closer to the end of walking but he is SO stubborn, he will probably be on his feet longer than anyone would ever expect him to be able to do it. I will get Hospice involved again soon but don't want to until he is no longer walking. They have 2 wonderful Hospice houses here and at that time, he's going to need to go to one of them. When he first got on Hospice, they offered him a bed the DAY he was coming home with me. After living on his own forever, we felt he needed the transition of living here before going somewhere else, he agreed. So we turned down the bed. 2 months later when I was hoping for the opportunity, they said he had improved too much. I don't regret my decision, if he had gone to Hospice he would be dead, they had him so medicated/sedated, he would have quickly lost his will to live. His refusal to take the meds has actually improved his attitude a lot and having more energy makes him happier.

I'm just stressed. I feel torn because I hate to see him go through this and yes, sometimes I resent how his illness has taken over my life. I'm sleep deprived and you all know how that feels, you get depressed & frustrated easier when you're tired! I am close to my siblings and I talk to 2 of them a lot about how I feel. My brother is starting to lean on me to call Hospice NOW but I don't think my dad is ready to go there yet. I am trying to hang in there until I feel he is actually ready to go, hard as it may be. There really is more reward in having this time with him than hardship. On days when I am overtired though, it is VERY hard to remember that.

Thanks again Cindy :) I'll be okay, just up and down at times! The downs get to me and those will drive me here. I'm glad I found this place because now when I am down, I know where to turn to find people who know what it's like to feel this alone.

Take care,
I went on a vacation in the summer of '06, and my father didn't do anything about replacing me. He said they would get by until my return. Well, others weren't wiling to do what I had been doing. He had to sit in his own wet urine in his chair for a couple days. He was then willing to wear a condom catheter. I think if you say you aren't able to do some of those things you are doing, he'll have to make some changes.

I understand the feelings you have. I have them, too. I wonder how long I can do all that I'm doing. When I think of the years that could be stretched out in front of me, I am overwhelmed. I don't want "this" to be my life, but it is. It sounds terrible to say, but I want it to be over.
Hi Mary Helen! Hope you and your dad are a little better. (Bless his heart!) I can bet you anything that if your poor dad had a way to ease your problems you are having due to his illness, he would. Nobody wants to be in that situation! Bless his heart. I will never forget what my ailing, late son managed to write on a piece of paper a few days before he passed. This is what he wrote on a piece of paper: "Mom. you are working so hard. I wish you didn't have to. Please tell me if I am being too mich of a burden. Are you mad at me, because you are taking care of me?" Let me tell you Mary Helen my heart broke when I read that note. It made me cry. I hugged him, I put my arms around him, and couldn't let him go. I asked him what prompted him to ask me such question. I told him that of course I wasn't mad nor tired of taking care of him! I told him that I would take care of him for as long, and not to worry about me. All I can say is God bless these als folks all over the world. They can't take care of themselves. Please don't be mad at me, but for you to say that you want it to be over! I was left dumbfounded! I could not believe what I was reading. I will be praying for you, dear! Your dad he is in God's hands, he did not ask to be where he is at. I will be praying for him as well. Just remember your dad's illness is not going to last forever, and GUILT KILLS!

Mary Helen,

Please do not feel badly. I'm sure when you went on vacation you were worried the whole time you were gone about whether your father was being taken care of properly! But as you discovered it was really a blessing in disguise, as he learned the hard way that things are available to help him as well as you!

Some CALS have a strong support system and have more help in caring for their PALS than others. It is terrible for one person to have to take care of one with such a debilitating disease alone or with little help. This can bring down the strongest person.

Most CALS that have been in your situation understand completely where you are coming from. There have even been studies done on the amount of stress that caregivers are under and what can be done to alleviate the stress.

I wish you the best and hope you will be able to find a way to ease the burden you are facing.

Let us know how you and your father are doing.
Mary Helen, you are experiencing what most CALS have at one time or another, I think. It is not that your love for your father is lacking but that your hatred for this awful disease is overwhelming. Rest will come for both of you and then you will be glad that you stuck in there. God bless!
Califsand - You too are just overwhelmed with hatred for the disease and frustration over all the red tape etc. involved with getting help....also I'll bet you are just so exausted....Your father is trying so hard to avoid admitting his fragility. My prayers are with you and all CALs.
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