It's been four years

[vltsra]

Four years now since my husband was diagnosed. He was doing well for the first three years, but this has been a difficult year. His left hand is gone, his right hand is very weak and he can do little with it. He is also having trouble walking and is on bipap much of the day now. It's hard to see him deteriorate this way. He alternates between sorrow and denial. The sorrow manifests itself in his mourning the things he can no longer do. The denial requires me to make him special foods that he swears will make him well. I've moved him into the bedroom and bought a TV so he doesn't have to navigate the two steps into the family room any longer. It's hard to believe that just about a year ago he did a 2 mile hike in Zion on his own.

My caregiving duties have increased exponentially. I do have a caregiver but when she is not here I spend much of the day helping him. He needs help with a lot of things but so far he can still feed himself, although I can see where this is headed too. I assist with all personal hygiene, physical therapy, and respiratory care while the caregiver is out. We're in the process of getting approval for a power chair, building an elevator in the house, and I'm looking now at sliding shower transfer chairs after he nearly fell trying to get in to the shower yesterday. I told him no more showers until we can make it safe, so sponge baths instead. I'll need to remodel my bathroom after the elevator is done; between our current construction project, which I am managing, and the power chair and home health visits and respiratory and personal care it's hard to keep up with everything. Seems every time someone comes over to evaluate him they ask me if I've done something else yet (Have you gotten a handicap van? Don't you have ramps? What are you going to do about the shower? When is the elevator going in?) and it makes me feel like I'm not doing enough. Guess I'm not the best caregiver but I'm trying. There are times when I lose my spirit or become frustrated and I'm not good at hiding it from him.

I'm told he has a decade or decades yet. My neighbor said "I hope it's decades!" I don't want to lose him but honestly I don't know how I'm going to do this for 10-20+ years. We had looked forward to retiring together and traveling and having fun. Now I'm watching friends do just that while I'm emptying his urinal and trying to make sure he is comfortable.

Honestly most of the time I am exhausted. I am thankful for the few friends who understand how it really is.

V

 

[affected]

I can't imagine being a CALS for decades. I guess you have to try not to think ahead in that way, just concentrate on all that is on your plate in front of you. We never know what the future holds, no guarantee that either he or you, for that matter, will have tomorrow.
After 3 years of slow progression it must seem like so much to organise in just one year. You are a wonderful wife and CALS - it is so easy to walk in from the outside and point out all that still needs to be done!

Hugs, the exhaustion is very real!

 

[lgelb]

I feel you, V. Just as a practical point, if he is on BiPAP most of the day and night, a decade seems unlikely, even if there is a trach down the road. I only mention that in light of your renovation projects.

You can never not do enough while doing your utmost, which you obviously are, and I know he knows that, too.

Best,
Laurie

 

[Nuts]

V, it breaks my heart every time another PALS reaches what I called "the really hard part"--both for the PALS and the CALS. Your exhaustion is real, and we do understand.

Please never allow yourself to doubt your caregiving. Pushing a PALS to fast to make accommodations and get equipment is hard, and some PALS simply won't allow it. I look back and wish that I'd taken things a bit easier. Of course, it's easy to say that from this side. Those people who mention things that need doing, they are not judging you (or at least they should not be). They are trying to help you, since you never know how fast things will move once they speed up. I'm sorry you are managing it all yourself--it can be so very overwhelming.

Honey, who told you he has decades left? How can anyone make that prediction? With ALS, it's impossible to know. Matt progressed slowly at first, but once things picked up it became clear that five years was all we would have.

 

[texastc]

All I can say is do NOT think this has anything to do with your quality of caregiving. You are the best caregiver. We know how tiring it is. Keep going one day at a time. Deal with the issues that are most needed first. From experience, a van was a superb investment...and will be easily recaptured later. Sliding shower chairs/stool...gotta have it. An elevator....wow, thats a big one....any way of rearranging things to avoid the upstairs? Power chair, definitely will improve quality of life...give some added mobility.

Keep up the good work, you are SUPER!!

 

[Ken15]

V,

On the one hand, your words are heartbreaking and on the other, they resonate so clearly with us. CALS-to-CALS, you're doing fine. Stay within yourself, do what you can and above all, do NOT second-guess yourself.

There is only so much time in the day and you have only so much (mental & physical) energy. Concentrate on the high priority things and don't sweat the small stuff.

Have you looked into hospice care? If your husband qualifies and is on Medicare, there is no time limit (just must re-qualify every 6 months, and can do so as many times as is necessary). We recently put my PALS under hospice home care and it has had a very positive effect on both of us - much needed help for me and additional professionally-delivered services for my PALS. Plus, my PALS gets to socialize/interact with a variety of other people (I'm pretty boring to be around 24/7 ).

Good luck, and hang in there,
Ken

 

[Jrzygrl]

Hi V,

So much of what you said resonates with me. I often felt like I was constantly behind. Running a race where I could never catch up. And the feelings of inadequacy and frustration - I was not good at hiding them either. We were oh-so-close to being able to retire and travel - and then it all came crashing down. I had and still have a love/hate relationship with social media. While I felt it was the only way I could stay connected, it also broke my heart watching all the "normal" things that we could no longer do. I still have trouble some days, seeing people complain about all the little things going on. So much "noise".

You ARE a wonderful, loving caregiver. It's so hard, the day to day. Hang in there. Sending huge hugs.

 

[pittsburghgal]

V, I truly understand how exhausting it all is. I have been doing this by myself for the past 8 years and the last 4 have been really tough. I, too. fear that this may continue for many more years and I don't think I have any more left to give.

Please don't ever feel that you are not the best caregiver. You are giving everything that you possibly can.

Sending you a hug.

Sharon

 

[vltsra]

Thank you all for your words of encouragement and kindness. Ditto to everyone else here.

When things took a steep slide downward back in March we had to sit down and decide what to do about the house. Our house is constructed on many levels and the main floor is essentially up a flight of stairs from the street entrance. We are on a hillside so the back garden is levels. We thought about moving, going back to his condo where he could live on the ground floor, buying a new place, or staying put. He even told me one day that I could just put him in the garage, as if I would even consider it. We ran the numbers and looked at other options and the elevator ends up being less than the selling and paying taxes, moving expenses, etc.

He is actually excited about getting a power chair so I guess I should be happy about it too. I know it will make things easier but seems like it is one more step toward the inevitable.

Anyone have any advice on sliding shower transfer chairs? He found one he likes but my caregiver reminded me that eventually he won't be able to stand up and we'll need a hole in the bottom. Things you never thought you would have to think about.

Hugs back. Thanks

V

 

[KateEmerson]

Seems every time someone comes over to evaluate him they ask me if I've done something else yet (Have you gotten a handicap van? Don't you have ramps? What are you going to do about the shower? When is the elevator going in?) and it makes me feel like I'm not doing enough. Guess I'm not the best caregiver but I'm trying. There are times when I lose my spirit or become frustrated and I'm not good at hiding it from him.

V, I found that the visiting " healthcare professionals " , with a few exceptions , added more to my burden than they helped me or my PALS. They also made me feel inadequate as a caregiver for the same type of interactions that you mention . After about three years of their visits I made an assessment of who actually helped our journey , was supportive and value added. We ended up with a nurse that I asked for specifically as she was very helpful and supportive and an aide.

If you can, please don't let these people affect your view of yourself as a caregiver, they have no idea of what you do everyday! Kate

 

[Bestfriends14]

V,

Please have faith in yourself because you are an amazing caregiver. The thing that I am learning about this disease, 2.5 years on, is that things are new every single day and, for me anyways, I will never know exactly what to do or how to act because everything is always new. We've never navigated this path before, so how can we always be our best? Be kind to you and know you are doing wonderfully. My husband is slow progressing but I fear that I may not be able to do it for a decade or more. That frightens me terribly.

Hugs to you

 

[ARCG]

V,

We are 5 years in and we use the ‘shower buddy’ system that we bought two years ago. It has been great, not inexpensive but less cost for us than than remodeling the bathroom, our clinic recommended it. It functions as a commode chair as well. They have a bathtub model or a shower model, whichever suits your set up. Both models have head rests, restraints, etc. The bathtub model has a tilt feature. My pals loves it.

 

[lgelb]

We had the ShowerBuddy also, as we rented and the shower had a threshold. We took off the door. After a while, Larry no longer had the core strength to use it, but it did extend the time he was able to shower.

 

[vltsra]

Thank you all for the responses - I will have to check into the ShowerBuddy for sure. I have ordered him a lift chair and we are proceeding forward with the PT visit today to work on recommendation for the power chair. I did send home the nurses the home health sent over yesterday...as I told them on the phone the only thing we are asking for is a PT to get the referral for a power chair. They came over ready to take blood samples...for a power chair???? I also bought him a frame for around the toilet that will allow him to lift himself up more easily. He can still get onto the seat and I bought him the bidet seat earlier this year which he loves, so he is very happy today. Just trying to prioritize his needs and not get distracted by other things.

V

 

[Narrowminded]

V - I so feel you. Everyone one of us CALS always feels like or felt that we were running behind.

We lived on the high side if the street, the garage was a level below the main living area. We opted for a stair chair. He actually used it quite a while. When he could no longer use it due to core strength, he would ride his power chair down the hill from the back yard. Soon after we moved to one level. That was 2 years after he was trached and vented. We could not have fit an elevator, I believe a stair chair is less expensive overall. I hope you’ve investigated that. Depending if he plans to vent, he may or may not use that elevator very long.

Hang in there, you are doing an awesome job!