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Kenji

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Oct 17, 2015
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CALS
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US
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CA
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Ripon
I'm 27 and I live at home with my parents to help my mom in taking care of my dad. My dad was diagnosed with ALS (with PBP) about 2 years ago I think. Until this week, his progression had seemed to have leveled off. Until this week, he was still getting around in a walker (very slowly) with just occassional wheelchair use.

On Monday (Oct. 12), my mom came home from work at lunch and he told her he threw his back out; he has a very bad back after a lifetime of construction work. We think it might have just been the disease progressing, but regardless, he could no longer get around on his own at all. She stayed home with him all week. Friday (Oct. 16), he could no longer use his legs. The right was completely locked up and even if we can get him to his feet, he can't support himself any longer. We actually had to call 911 and get him taken to the hospital because we couldn't move him and he was so freaked out.

Of course, the hospital just said this was normal progression. They are sending a home health person by sometime today and said that we can get someone for a couple hours a day, but there is no way that it enough. We can't lift him to get him into a wheel chair and it takes both of us to adjust him on the couch/in his recliner (which broke today!). He is calling us constantly, seriously at least every 5 minutes. He won't accept that his legs don't work anymore. Within an hour of getting home from the hospital, he tried to get up, fell and narrowly missed cracking his head on a table. We were only out of the room for 5 minutes!

Neither of us has slept tonight because he is constantly calling us. When the recliner broke, I had to call the fire department at 3am to move him for us. He refuses to touch the hospital bed we have, so he is sleeping sitting up on the couch. He's only needed the full time caregiving for a week and we are both already so totally, completely exhausted. Also, he has a caseworker through the UCSF ALS center, but they have not responded to emails over the past several months.

I don't know what our options are, but I don't feel like we have any. I don't feel like we can stay here when he doesn't care that it physically hurts us to move him or that we need sleep or a minute to go to the bathroom. I know he is imprisoned in his body, but we feel like we are imprisoned in our house.
 
So sorry. There are answers to a couple of the sub issues but the overall not cooperating is driving all of this to the crisis level. Is this his baseline personality and it just did not matter before because he was not so dependent? Has his personality changed since his diagnosis? Or is this a sudden change? If it is the last it could be part of a grief reaction to loss of independence that will pass and might respond to reason. On the other hand if he was always stubborn and self centered it will be hard but eventually you might be able to reason. Or worst case he has FTD- dementia sometimes associated with ALS and he won't get it and you can't reason with him. Sorry but it does happen. How you approach the issue depends on what the underlying dynamic is.

The answer to the transfer is a lift. It is the only way you can handle someone with his transfer needs. Will he accept it? See above.

The case worker issue if you literally are getting no response to email as in they do not email you back it sounds like there is an issue like broken email or the person left or is on leave and somehow their email is not being checked or forwarded. If they are generally unhelpful that is another issue but either way call. Tell them it is a crisis situation and you need help to make this work

People can and do take care of immobile people at home but you need to figure out the cooperation part. When you said your mom stayed home all week does that mean she usually works outside the home and you do too? It sounds like he needs someone there now and you need to explore resources. A decent caseworker should help but custodial care is not covered by medicare. If he is not a vet your options beyond the couple of hours might come down to medicaid or if you don't qualify handling this yourselves personally or financially.
I am sorry but it sounds like you are in a tough place and there are not always enough supports available to us
 
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It is mostly just his personality. He has always been incredibly stubborn and definitely cares more about his needs than ours. I don't think he has FTD, but he does have PBA so his annoyance at things can easily turn into rage or crying. I don't think there will be any reasoning with him. A good amount of the time, he won't even let me help, he just wants my mom. Neither of us are caretakers by nature, I've never even wanted kids.

We both work full time in the offices at a private high school. What's worked out well until this week was that I only work on campus 25 hours a week and could be home in the mornings and afternoons with him so he was never alone more than 3 hours. Now he is at the point of needing a full time caregiver. It's only been a week of that and we are both at the point of crying when we hear him call us. I have literally been up all night because he is calling us so frequently.

I doubt he would allow us to use the lift, but an even bigger issue, the ones I'm seeing in google images, I don't know what we have the space to move one around in our house, especially the bathroom.
 
Kenzie, since he seems to be of sound mind but stubborn and not tuned in to the needs of others, you may HAVE to resort to theats. ". If you don't consent to a lift, .......,.etc., we will have no choice but to send you to a care facility because we are unable to continue helping you without this."
Know it seems harsh but neither of you will be any good to him ( or yourselves) if you lose your health, sanity in the process. I am so sorry for you. Do reassure him of your love and the fact you will always be there for him- but the circumstances have to change to allow for it. This disease sucks! It is so important that you get sleep and a break to continue this sanely!
 
Kenji, if there is no room to more the lift around, you may consider a ceiling track system. Our bedroom is too small for a hoyer, so we have a track system that takes my husband from the bed to the toliet and shower area. If you don't work out the bathroom he will need a commode chair (you will still need a lift to get him on it).

Have you had an occupational therapist survey the home and give you advice? If not, you should talk to the folks at his clinic about doing that, and quickly. He may also need medication for anxiety--another issue for his doctor.

We go to clinic every three months, but if something comes up between visits we are always able to call and schedule a visit sooner. The folks at our clinic said that most patients don't realize that they can come as often as they want or need to (sometimes just to see one provider, depending on the issue). It sounds like you might benefit from a visit soon. Foret the email until you get that worked out--call the caseworker.

I agree with Cheerleader: once you have done all you can, your father needs to cooperate and not run you into the ground. If he is self-centered, perhaps explaining it in terms of your continued ablility to care for him would help.
 
you may consider a ceiling track system. Our bedroom is too small for a hoyer, so we have a track system that takes my husband from the bed to the toliet and shower area.
Is this something insurance pays for? He has both Medicare and insurance through my mom's work.
Have you had an occupational therapist survey the home and give you advice? If not, you should talk to the folks at his clinic about doing that, and quickly.
As far as I know, no one has ever asked us about that. The problem with the clinic is that it is several hours away from us, so even when he was moving a bit better, it was very hard for him to travel like that. My mom apparently heard from them recently and I guess now he can go through his primary care doctor, but I don't know how that works.
He may also need medication for anxiety--another issue for his doctor.
He definitely needs anti anxiety medication and sleeping medication, but he refuses to take either of them.

The folks at our clinic said that most patients don't realize that they can come as often as they want or need to (sometimes just to see one provider, depending on the issue). It sounds like you might benefit from a visit soon. Foret the email until you get that worked out--call the caseworker.
I did not know this and I'm sure my parents didn't either. Whenever we tried to switch dates before, they always told us it had to be on a Friday so that the whole team could meet. He hasn't actually been to the clinic in probably 6 months because he refuses to go, he doesn't think it helps anything.

Thanks to all of you for responding by the way. It has been an exhausting week and it is nice to get some knowledgeable and helpful answers.
 
I would certainlly check with insurance about the track system. The VA provided ours, so we didn't have to worry about insurance. Since insurance will buy hoyer lifts I would think that in a home where they won't fit it would be reasonable to ask for a ceiling system.

I'm sorry--I should have said we can go any Tuesday (which is clinic day here). You would want to meet with the whole team. His primary care doc can take care of many things, but if he doesn't specialize in ALS he will probably be limited in his ability to suggest things that will
make your lives easier.

Unfortunately, if he refuses everything and is mentally competent, you may have to let him live with the consequences of his decision for a day or two. You cannot go on the way you are. I'm so sorry that he is being so difficult.
 
Is your dad a veteran by chance? You might check with your ALS clinic and see if they have a loaner closet that maybe you can get some equipment.
My father is 81 and is living in a assistant living facility. He can't do anything for himself. My brother, sister, and I work so there is no way we could provide the 24/7 care that he needs. There is also no way in h---- he would ever let my sister or I bathe him or help him with his toiletry issues. He can't do anything for himself anymore.
This disease is a freaking nightmare!
 
Is your dad a veteran by chance? You might check with your ALS clinic and see if they have a loaner closet that maybe you can get some equipment.
He is not a veteran. There was supposed to be some sort of home health person coming by today to help us figure stuff out I thought, but they are waiting for insurance to approve it, who knows how long that will take.

There is also no way in h---- he would ever let my sister or I bathe him or help him with his toiletry issues.
My dad is the same way. I mean, not that I would be excited to do it, but it obviously needs to be done.

Honestly, he doesn't want to be alive any more. He has told my mom that many, many times. And I get that, I would feel the same, but making the lives of your caregivers more miserable isn't going to help anything and he doesn't seem to care.
 
Sorry to hear about your dad, Kenji. Has he tried Nuedexta for the PBA?

1) Are you sure you can't use a Hoyer-type lift? Look at the dimensions before you decide. When moving someone, the width of the lift including the legs themselves can be ~25" depending on the lift. The length can be more of a problem, but ours was 41". We have a small apt. Ask your ALSA or MDA chapter about a loaner lift.

2) As Donna et.al. say, this is a "use a lift or this won't work at all" situation. Still, I'm not clear on how drastically your dad's personality has changed from before the "threw back out" incident. He may be simply very fearful while acting out, since it sounds like his physical status changed in a blink, to a somewhat unusual extent (Since there was trauma, did they image his spine at the hospital to rule out cord compression/damage? Did a neuromuscular specialist examine him?)

3) Since your family is in crisis and you can't keep calling 911, a social worker and OT from your clinic, a home health agency designated by the clinic or from the ALSA or MDA, should be willing to make a home visit and recommend community resources and next steps. I would make calls until that happens. In addition to a lift, you need options for toileting and hygiene for your dad, which may include a shower/commode chair depending on your setup.

If your usual clinic is unresponsive, call the MDA and ALSA directly; if they cannot help in a timely fashion, contact your city/county's senior services agency (every jurisdiction has one). Also, there is more than one SF-area clinic so if UCSF is not your best option for whatever reason, you may want to explore others.

If your dad wants care from your mom, assign your mom to answer his needs while you make these calls. Emphasize the sudden change in physical status (and, as you know, "PBP" has not been accurate since he developed walking difficulty; say "ALS.")

Most of all, however things play out, I would reset yourself and talk quietly with your mom (who should take the lead if there is more trust) and dad. If you are using the language of feeling imprisoned with your dad, he will only feel more desperate and threatened. Have a pre-conversation with your mom, pick the one thing that's most important (like acquiring and using a lift for transfers) and try to forge consensus around that. Try to make it a positive (added safety for all three of you).

Being lifted for the first time is traumatic. Let your dad see you lifting your mom and vice versa before you try with him. If possible, do the whole sequence with a third party (e.g. the OT) around, who can assure him that hundreds of thousands of lifts are in use around the world, and it's the same principle as a wheelchair -- a mechanical aid.

Depending on how things go from here, and your financial situation as a family, you may want to begin exploring the possibility of a spend-down that would trigger Medi-Cal eligibility and thus greater home care coverage/a reimbursed nursing home option.
 
Laurie, you are such a treasure. Kenji, she's been there and back, so please know you are getting great advise.

As for your dad's hesitation to let people other than you mom help him with personal hygiene issues, that may change with careful handleing and time. This is a great place for advice, so, as Laurie said, reset and relax if you can. There are alternatives to almost everything.
 
I've seen the people load my dad into his hoyer lift at his assistant living place. There is no way I would ever attempt to try to transfer anyone into one of those by myself. Way too complicated of a device for me to operate. I would be scared too death of hurting them.
 
Skipper, you would do it if you had to, and you would do FINE. We rise to the occassion. You have become a long distance advocate and supporter, something many people would imagine difficult (out of sight, out of mind...but never in your case). As in all things, practice makes perfect.
 
I was a nervous wreck just last week when I had to feed him and wipe his face. I thought I'd rub too hard and hurt him. He thought it was funny though. He said "Kim, I'm not going to break into pieces! lol"
 
Actually the lifts are so easy to operate. You just go slow, never rush it.
If you have tried to manually assist someone who cannot stand you quickly find the lift is a piece of cake and so safe. On top of that you can position the person perfectly into a chair or bed with a lift.

Yep, scary the first time, a little less the second time, but after 3 or 4 lifts you are just happy dancing the whole way!

Same with feeding Kim, you feed your dad a dozen times and you are a pro and know how hard to wipe, how much to put on a spoon etc.
 
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