CAREGIVERS REFUSE OUTSIDE HELP

[wtlpc22]

. I need wisdom, making a decision, or some kind of change. It is out of love for my wife for 41 years. My daughter Hannah now 24, has devoted her life to caring for me. They have little energy to do anything else. That is what I am concerned about. I have lived 16 years with ALS DX JAN 2006 @ AGE 45. NOW 62

A Facebook Friend who has been a Hospice nurse advised, let them be they got you this far

Since December 24th, 2021? I have to be suctioned for throat phlegm and mucus by Hannah. My hands are useless so Karen holds the urinal over 500k times 7 years. I have purchased external options. Many previous attempts to hire individuals failed. We have tried agency help without success. We are worn out and have no confidence. Then add concern about covid-19, the unreliability of past agencies) and staff with no experience with ALS.

for from VA
Thank you for sharing your thoughts and concerns.
I can also offer skilled nursing to come 3x a week and do bowel care, I have another Veteran who is a quadriplegic and uses such a service.
We could try to find another home health agency to come out.
Finally, we can offer a palliative/hospice consultation and explain in detail what they can provide at home.

 

[lgelb]

I certainly wouldn't attempt to judge what is an intolerable burden for your caregivers, or you, W, and only you can judge whether either is a reason to wind down your life.

Not knowing what conversations you have had with Karen and Hannah, I would certainly share your thoughts with them, and let them have their say, while recognizing and communicating that the choices are yours. I am sure you and/or they have already considered or tried medications or counseling as adaptations to your situation.

I am a little confused about your subject line -- that your caregivers "refuse" help, vs. the implication in your post that they are willing but it has not worked out. The help that the VA is offering in terms of bowel care and a new agency seem worth trying if you are willing, and would help inform any decision as to beginning hospice, aka winding down.

I admit, I would have thought there would be some students or other willing/reasonably-priced helping hands available in Florida, of all places. But I know towns differ. If you are able to share some of the challenges you have had in more detail, as well as why condom caths, etc. have not worked for you, people here may be able to better suggest options.

However, if the reality is that you yourself no longer have reasons to go on, irrespective of what your caregivers face, that is a truth to be recognized that cancels out all others. But likewise, if your personal preference is to continue your life in its present form, no friend should advise you otherwise, and the "hows" of that lie with you and your family. That doesn't mean you don't take Karen and Hannah into account -- of course you do, but you are still three people.

I guess what I'm saying, taking everything on board, including any further VA care trials, it's really up to you whether you are currently aiming at a self-directed life, with reduced wear-and-tear on your family, or heading toward the end of life for whatever reason(s). We can support either -- let us know how we can help.

Best,
Laurie

 

[wtlpc22]

Thank you
When I got diagnosed my daughter was 7.. She asked ,"Are we going to be poor? No, I said , Dad has a big life Insurance policy.. "

Plus work disability insurance. . no debt no mortgage
I have planned for the worse and hoped for the best.
So not to have a plan backup as I get worse gnawing at. me
But its hard to the right personlity

 

[em9988]

<quoted text removed>

Although my mom hasn't had it as long as you have and we havent had to deal with the illness to your familys extent, my mom has progressed really quickly from a drop foot last summer to pretty much arms and legs are now 100% gone and now starting to slur her words as well as choking on water.

So not really wisdom and I don't know if you've already had this conversation with your daughter but this is just my view of the situation using my situation as the son of a mom who has ALS. Also slightly in same situation as we have no debt or mortgage and I have a pretty good career, so financials is not an issue. My dad is also traditional and stubborn so he. refuses any outside help.

Seeing her progress so fast week to week has really made me feel like I'm being robbed of my mom because even mentally shes not who she use to be, since it progressed so fast she barely had any time to mentally acclimate, every week something is taken from her whether it be functionality or her independence. Ever since diagnosis shes been fine with going into hospice care if she loses her speech and eating/drinking function. I'm thinking that she just doesnt want to be a burden on her family and just let us be as she also claims that if shes not able to do anything its not really living anymore.

This year im turning 31 so I'm a bit a older than your daughter, however I dont have a family of my own yet or kids yet and a part of me being selfish is that i want my mom to be around to witness all of my big life events even if it means keeping her around in the later stages of ALS, if what that takes is for me to give up some sleep, or giving up some of my spare time then its a price Im willing to pay.

But do I want to make her pay the price of being trapped in her body everyday just so she can stick around and be in my life? No because that would only be for my own selfish wanting of my mom being proud of me because will she even be in the right state of mind at that point to feel the way a healthy parent would watching their sons major life events, probably not.

Sorry if this felt rant-y, your post just got me thinking and this is not something i've express to my mom yet because in the beginning we were all in sort of denial about the severity because she only had a drop foot and now shes kind of in a weird mental state due to the fast progression.

 

[lgelb]

Em, those of us a generation up from you have more experience being or watching people who "can't do anything" for themselves and if they say that isn't the life they want to lead, you can believe it. And your mom can't really say as yet when that point is for her, because she hasn't had to face it. I hope it's a while till she does, for sure.

If someone thinks they are a burden, they will generally come out with it pretty much that way at some point. Or they will stop eating, drinking, living because that's how they want it to be, as is their right. Don't worry that your mom will lose heart because of you. Though it is very hard, try to live each day as if she won't wake up tomorrow, and she and you will both know what is right if/when the burdens for either of you are too much. There's enough about the future we don't write in ALS, but that part, you do control.

Not sure what the "weird mental state" is, but counseling and meds are always available for you and your mom.

Best,
Laurie

 

[lgelb]

What kind of backup plan are you going for, W? What are you worried about?

 

[affected]

Em thanks for sharing your own view on things. I'm so glad you are there to care for your mum. Rapid progression can be such a thief, that is for sure.

W I wish there were simple answers, the very slow progression does bring issues all its own. I'm one who also likes to have backup plans.

 

[Wilson2009]

Did the VA talk to you about Veterans Directed Care or Comprehensive Assistance for Family Caregivers? You might want to look at this post: VDC/PCAFC. Eligibility depends on service dates, but given your age I am guessing VDC is the best fit. It would certainly give you more control. I would also encourage you to talk to the Palliative care team at your VAMC. They can be a great help.

 

[wtlpc22]

Thank you'll for comments.
We are enrolled in VDHC & Primary Home Based Care Wilson 2009

The young woman age 31. How

 

[wtlpc22]

No, I am. I am not feeling useless. I have 2 websites and a rebroadcast podcast.
t is difficult for me because Karen and Hannah are exhausted. They skip doctor /dentist. There has been no relief. They don't know what I read from forums ,information, and what is to come . Who knows how many more years I have? That is a lot to ask. It is what good marriages take . Your concern for the other is most important.

I miss them because it becomes more nurse and patient.
As for the title, I guess you can change it Caregivers take too great of a job. Exhausted but won't consider help available,]

 

[KimT]

I'm your neighbor and you would be in my local ALSA chapter, I believe. Unless you're in Jax chapter. You're right on the border of central Florida and NE Florida chapters. Have you reached out to Von, the hospice chaplain for our group? She has many ideas about home health care and would probably be able to help you get some help. Two months ago a company came in and did a presentation about various options in home health care. Even if you're in the Jax group, reach out and find a rep from VITAS. They can offer guidance.