Worried about a friend who's wife has ALS

[Eastwood56]

Hello, I have a friend who is the major caregiver to his wife that has ALS. The husband is going to be 67, has a bad back and also is in need of knee surgery. His wife was diagnosed with ALS in September of last year, however her current condition seems as if she is in a stage where her ALS is more severe.

She is in a mobilized wheelchair, can not really speak, eat and is completely dependent on her husband to take care of her.

My worry right now is for the husband. I feel that he is at a state where he is going to break. His wife will only accept his help, but she is very mean to him (I heard that this can be caused by the ALS). He wants help, but she will only accept his help. Due to his physical and mental state, he seems to be at a breaking point.

We have told him to reach out for help, however she will put the guilt trip on him and it is tearing him apart.

At her stage of ALS, I really feel she needs in home care (24 hours) or should be moved to a nursing home.

The husband is really a great guy and has been helping her for well over two years, however her condition both physically and mentally has taken a turn for the worse.
I am thinking that it would be wise for the husband to have someone from ALS assess the situation.

Can someone tell me what help is available? I know that their income is limited.

Thanks
Gary

 

[Atsugi]

Gary, someone else needs to provide a thoughtful answer to your question, because right now, all I can hear is the screaming in my head, yelling "Stay Out Of It!"

Perhaps your friend could sign on here and we'd be happy to hear his first-hand account and provide whatever advice we can that might help him.

Your friend is dealing with one of the most difficult problems in the world. Part of the problem (just one part) is trying to maintain a good relationship with his wife, the one he chose to love forever in sickness and in health, etc... That isn't always possible, for a number of reasons. But he would have to be the one to describe what the problem is.

If you really want to help him, cut his grass or bring dinner over to their house. Typically, a caregiver lacks the time to take care of those things.

So here's my best answer to you: Suggest that he log in here and participate. We'll be very happy to help him.

Maybe someone else has a better answer. I have to go stop the voice in my head, now. Thanks for caring about your friend so much that you would seek out help for him. Your heart's in the right place.

 

[Eastwood56]

So if I stay out of it and my friend does something bad to his wife or himself, I should be ok with it?
We have been helping him out by fixing meals, giving massages and supporting him with positive talk.

They live two hours away from us and each time we visit, the conditions continue to get worse. I don't believe
He is thinking logically due to lack of sleep, rest and stress and you
Want me to tell him to join ALS to talk.

I don't agree with your suggestion to back out and continue to cut grass
and do dishes. That is not enough to help this family.

 

[Dave Kerwood]

As a carer for my wife with ALS/FTD for a couple of years now I can say that if you came over and made me a cup of tea I would probably break down in tears. No one makes me tea other than myself.

Sometimes it is the smallest gesture or help that means so much to folk like me. I have found tremendous support on this forum and I do log in quite often and mostly read and blog my day on my own thread as I have no one else to talk too.

Honestly, making tea, washing the pots and cutting the grass means so much to a carer. Carers do not like to think that they cannot do things that they did before and the older the carer the harder it is, believe me I know.

We have had to downsize from a large house to a small bungalow for safety reasons for my wife, when I made this public everyone ran for the hills other than a couple of family members plus a complete stranger also helped, so in effect I moved my home, set it up again somewhere else mostly on my own.

So what Mike was saying is absolutely correct, in my eyes...

I am 53 and able to cut my own grass but as most of my time is looking after my wife from morning too night I simply do not have the time so I have had to pay a gardener to do this for me. I am not working as I gave up my business 13 months ago to care for my wife so paying a gardener takes money out of my pocket and with no income it hurts...

Dave

 

[pittsburghgal]

I have to agree with Dave and Mike on this.

I am the sole caregiver for my husband who is wheelchair bound, has a trach and feeding tube for all nutrition. Our family all live far away ( over 10 hours road trip). We recently moved to a new one level house and I do not know the neighbors. I have no time to socialize at all.

Sat. I went outside to start shoveling the driveway after we got 10 inches of snow. I knew it would take me days because I can only leave my husband for short periods of time. After about 1 hour of backbreaking work, my neighbor came out to do his driveway. He saw me and came over to clear my driveway with his snowblower. I can't tell you how much that helped me. I almost broke down in tears.

Also, I have recently found the ALS forums. This also has helped me tremendously. Just knowing that I am not alone is priceless.

I think you need to ask your friend what exactly would be most helpful to him.

You are a good friend in your level of concern and desire to help.

 

[Nuts]

I'm going to take a slightly different approach here. It sounds like you are already giving hands-on help to support this couple, and as their close friends you see things continuing to worsen. I applaud your desire to head off a possible disaster, but I will tell a cautionary tale.

I have a close friend and neighbor who saw me losing myself very early in this journey. She is also dealing with a husband with a debilitating and terminal disease. It's not as awful as ALS, but they have very traumatic episodes and the docs have told them there is nothing more to be done. One night one of those episodes will be his last, and he won't have morphine to soften his gasping for air. She is not a touchy feely person, although she would do anything for me. She told me flat out several times that I needed to buck up and allow myself to talk about something other than ALS. She was right, but it put a serious strain on our relationship that I'm not sure has ever fully healed. I love her, but I no longer trust her with my fears and feelings. No matter how loving your intentions, be prepared to find an unexpected response.

I get the sense that you are good enough friends that you will take that chance for people you love. Go gently though, because they can't afford to lose you.

I would never lead with suggesting your friend move his wife to a facility. Those of us who can possibly care for out PALS at home do, even beyond the point of exhaustion, because, frankly, they can get much better care at home. Hands down. Medicare will pay for physical therapy at home to maintain range of motion, and once skilled care is provided home health aides can come to help with bathing, eating, etc. It sounds, however, like the problem is getting your friends wife to allow this and only he can decide how tough a stand he will make. Trust me here, the best people for him to bounce this off of are others in his situation.

Encouraging them to join here to talk is a bigger thing than you might imagine. By reading here, your friend will eventually realize that he is not the only one feeling and thinking the thoughts that he cannot bring himself to express. If he doesn't share those thoughts on this open forum, we can lead him to closed groups where he can feel safer. I was NEVER a support group sort of person before ALS. This is my lifeline. Because of this group of incredible people I don't feel alone (and a CALS can feel very along surrounded by loving friends and family, please trust me on this). Another beautify of this group is that the door is open 24 hours a day, 7 days a week. I never fear waking or bothering anyone here. No matter how many loving friends tell me to call anytime, I just won't. I will, however, come here.

You asked if there are resources to have someone assess the situation. Do you know if your friends have been in contact with the ALS Association? They can offer resources, free of charge, and are life savers for many people dealing with this disease. Sometimes researching who can help is too much for an elderly CALS, so providing contact info or even offering to call for them if they are receptive might be helpful.

Your friends are fortunate to have you in their lives. Thank you for caring.

Becky

 

[affected]

Firstly can I say what a great friend you are.

You describe a very difficult situation, and every one of us as CALS have been there or are there now. This disease is the worst monster on earth, and it rips our PALS away from us and deals a heavy blow to the CALS.

I can't tell you about the ALS associations near your friend, but I'm sure you can find out who they are and get some contacts going for your friend. I would imagine they already have contact with them so maybe check that out.

If he would join this forum you will be putting him in contact with the best support he is going to ever get. We can help him daily on a practical basis.

If you are willing to travel 2 hours each way, every week or 2, and continue giving practical help I would encourage you to do it. Don't expect things to look good there or improve, they are only going to get worse, that's the nature of ALS sadly.

Thank you again, your caring has touched me deeply, so your friend is going to benefit from any kind of help you can give him.

 

[Eastwood56]

I want to thank you all for your responses so far. It is very hard for my wife and I to sit back and watch this horrible event take place. The husband lost his first wife to cancer and now he is loosing his second wife to ALS. He was the primary caregiver in both situations, however he has told me that this has been much harder on him due to his age, health and her bitterness towards him. He does "everything" for her and she treats him like he can't do anything righ.....even her family stay away from her because of the way she treats them. As far as us doing things for them, actually he wants to do those things just to get out of the house. He would love to cut the grass or plow the driveway, however whenever he leaves the house, even for an hour, she jumps all over him when he returns. He has a doctor's appointment tomorrow and will be gone for a few hours. I know he is not looking forward to his return because of how she will act towards him (her brother will be staying with her during that time).

I am going to suggest to him that he join ALS just so he can vent and get the opinion of others that are going through this or have gone through it. I am not sure how proficient he is with a computer, however I can find that out. He does need someone to come in from ALS to assess the situation or for that matter. He just needs some time away from this to recover every now and then. My wife and I plan on returning this Friday to spend a longer day with them, however I am going to call him right now to find out if he called NYConnect which is an agency in NY that can help in providing funds for long term care.

Thank you again to everyone for your responses. I think I told you that he wanted to reach out to ALS before, however his wife wouldn't let him have any part of it. I believe he needs to take the bull by the horns and contact ALS no matter how she feels. Thanks Gary

 

[lgelb]

Hi, Gary,
If their income is limited, they may qualify for Medicaid in NY, which would provide them more benefits than Medicare alone, possibly including long-term care. They may also have extended family resources of which you are not aware, that should be leveraged.

I would start a conversation w/ your friend along the lines you have here, using "I" statements like, "I get very worried when I see you trying to transfer [wife's name], knowing your knee and back problems and imagining some kind of accident or trauma where you wouldn't be able to help her at all. Is there any way I can help research what options might be available...?"

The clinic or hospital they go to probably has a social worker that could be consulted as well, even by phone/e-mail. If the PALS has cognitive impairment that is affecting her personality, that could be considered as well. And, of course, she should have or complete advance directives to ensure that should she be unable to express her wishes, they have been documented.

You know your relationship w/ your friend better than anyone here. I trust that you will intervene in a way that preserves and strengthens that bond.

Thank you for caring.

Best,
Laurie

 

[affected]

Gary my husband had FTD as well as ALS and he wanted only me to do everything and I received the brunt of a lot of rage. I've been able to instantly relate to so much of what you have said about your friend. Please let him know he isn't the only one experiencing this kind of behaviour.

We can help him here, and you are going to be a very important part of helping him as well. Thank you so much that you are being a friend this way. My husband isolated us a lot, and to be honest most people were happy to run away at the least provocation.

 

[pittsburghgal]

Gary,
Your concern for your friend is inspiring.
I think it would be helpful for him to contact his local ALS Association chapter. They have social workers who he could talk to. My husband went into the hospital last June walking, talking, eating and drinking. After a stormy 10 week hospitalization he came out unable to walk, eat or drink and his speech was difficult to understand. He had multiple follow up doctor's appointments and I had no way to transport him in his power chair. I contacted The local ALS association and they arranged for a van to take him to all of his appointments. He could also contact MDA. My husband's wheelchair is a loaner from them. I have found both of these organizations to be very helpful.

My husband also prefers that I do everything for him myself. He was used to multiple shifts of teams of people caring for him in the hospital. Initially, I was sleeping 2 hours a night when he first came home. I told him that if I continued like this I would "go over the edge" and be unable to take care of him at all. He seemed to understand this and life has become more manageable. I am not sure whether your friend's wife has some degree of dementia from FTD, which could make this type of discussion less useful. I think sometimes the person with ALS is centered on themselves (which I certainly can understand) and less aware of how it is affecting their caregiver.
Sharon

 

[littlered]

Gary, I too am on the outside looking in, as I call it. I have also watched a similar scenairo play out between PALS and CALS. In this case CALS has a terminal illness as well and has been her main caretaker for over 3 years. It is difficult to watch the dynamics change between your closest friends. We are the only friends who have “stuck with them” and that goes for most of their family too.

As previously said, only you know your relationship with PALS and CALS. I’ve attempted to “give my thoughts” to mine and received looks of “back off” (even though we are as close as brother and sister). I changed my course and realized I can’t get in the middle, even when she is so incredibly nasty to him. Instead I’m just “doing” for them, which I know you and your wife are doing also. Dishes are dirty, I wash them. Same with laundry, shopping for them, clean the pantry or frig or whatever. Now when CALS knows I’m coming, he cleans up so I won’t do it. My comment to him, is “I can’t be the caregiver, but I can do anything else so please leave this for me to do!” Sometimes he does, sometimes he doesn’t.

What we also do is encourage them when we have conversations. If he would bring up help, we would agree and point out positives. She didn’t always agree, but was at least part of the conversation. Eventually he won out.

I agree with encouraging him to join this forum. The support is incredible – at all hours of the day. Maybe hearing it from people who are in his shoes will help. My friends finally have help morning and evening so he is doing much better. I have not been successful in getting either of them to join here, but they are both aware that I read regularly and will sometimes ask me questions on certain topics.

I’ll stop rambling, but want you to know you are not alone.

 

[gooseberry]

Gary....just my humble thoughts..could you and your wife stay with the lady so hubby can get away? A night or a weekend would really help. He could stay in a hotel, see a movie, order room service...just regroup. If not, do you know nearby family or friends? If so, maybe you could make a schedule for errands and home projects. Working with your friend you could work it around what he needs and wants to do..

Normally I dont say this but it sounds like he needs to get away and the pals may just have to accept it. He must take care of himself or he will need a carer.

 

[Atsugi]

"could you and your wife stay with the lady so hubby can get away?"

Wow. That is the most incredible suggestion. Wish I had thought of that.

 

[Eastwood56]

My wife and I would definitely do something like this, however, she will not accept anyone's help except his. This is the big part of the problem. He needs to get away and she doesn't want him to let him out of her sight. I believe she doesn't want us to take care of her when she needs to go to the bathroom or put her to bed or for that matter, feed her.

We feel that she is at the point where she shouldn't have a say in what "she" wants, but what is best for the rest of the family. I think Laurie suggested getting help from Medicaid and I am checking with the husband to see if he has done this. In his mental state, I am not sure he can even deal with more paperwork.

Not sure if I told everyone, but we believe she is in the advance stages of ALS and is currently taking morphine pills to ease some of her pain.

Her brother indicated that he joined the ALS forum and I hope he will join in on this conversation seeing that he is staying with the family. He will be leaving in another two weeks to go back home and that is a time that will be even worse on the husband.