Help with me mom's Alzheimers

[ToddM]

Hi all, 

I normally don't post much but was wondering if anyone else has or had a parent (that you are close with) who has dementia or Alzheimers.

I'm her sole and primary caregiver and I can't afford private nurse and I don't believe in rest homes, she or I can't afford one anyhow.

I'm having a really difficult time handling it as we were always very close. 

Does anybody have any advice in how to cope and handle it from my end, besides going to support groups (I, myself, have severe agoraphobia, hard to leave the house, have all of our needs delivered and (I have a taxi/uber take us to her doctor appts or ER when need be.)

I can't tell anyone I feel suicidal myself again (issue my whole life on and off) because my mom has absolutely no one else but me to care for her and no one will cover her health insurance because of the severity of ALL of her medical conditions. I called a crisis center once and all they did was tell me to call a number to get free therapy, but I said I'm agoraphobic and have problems leaving my home with no insurance and they said they couldn't do much more. Anyhow, my mom also has heart failure, on oxygen and can't walk from past back surgeries but it's her depression and dementia that I can't seem to help get her through. The hospital said the dementia will eventually turn into Alzheimers and at the rate it is accelerating I know I have an even bigger battle ahead of me very soon. The medications they have her on are not helping at all and they've been told but just suggest I toss her in a hospice. Can't do that, no money and I would never think of such a thing. 

My mom is only 60, was a beautiful model and intelligent woman at one time, everyone loved her and it is extremely difficult to watch her deteriorate on a 24/7 basis into a shell of who she used to be.

I would like a break but can't seem to even leave my house because of my agoraphobia. I don't take anything and turned down for disability myself, have no insurance to see someone for my own issues, so I just want to be there for my mother and do the best job I can.  I know I have to stay healthy to be able to care for her. 

Anyhow, thanks for taking the time to read my post.

Thanks in advance, for any help and advice you can give me.  

 

[susie]

@toddm

i am sorry to hear your story, i hope your mom and you get caring help.

   https://alzfdn.org/caregiving-resources/2860-2/

might have resources for you.   my mom didn't have alzheimer's but while dying she did reach the point of needing hospice.   i know you are going through a lot but 'toss her in hospice' is an odd statement.    maybe it varies from state to state, country to country, but my experience with hospice was superb.   mom stayed in her home, and the hospice nurses came twice a week.  they were the most caring, loving, understanding people.    and in usa/nc where we live it was free.    they helped me manage her meds, hugged me when i needed it, even offered to sit with mom if i needed to go scream and cry somewhere.   i hope hospice in your area is equally wonderful.  https://www.nhpco.org/

always get a referral to a non-profit hospice, never use a for-profit one. 

i wish you well.

 

[Biskoinferno]

WOW reading this post it reminds me exactly like mine Fukin sad 

 

[benzenering]

Todd, if you’re still here, I just found your post because I wanted to reach out about my own home situation. The one I live with has not been diagnosed with anything and refuses doctor visits anyway. So I can’t say Alzheimer’s or dementia, but I thought all along that after decades of getting along well enough, I was being willfully emotionally abused and more recently, verbally abused, but really aside from terrible hearing loss (refuses to get hearing aids), I have come to realize that this person is quite senile, whatever the case may be, and it’s frightening. I was down on myself for doing drrugs…emmjay for the past few years, and that’s not really my style. Tranqs and sleepers, yes, they are pharms, but I never thought I’d become a st0n3r. Luckily, I haven’t craved that for around a month so far. It’s just too strange to face and I’m demoralized by not being able to find work to be financially independent, to get out of the trap. Ever since I recently got back on vals, I think that may have helped the mj craving.

I have had agoraphobia before, and it was before I could score some v. I was advised to do volunteer work, and I fell apart as soon as I walked into the small private library to apply. I knew the volunteers and patrons, so it was not a threatening situation. Anyway, I did 4 hours, once a week, and as I was there, I looked for any book they had on anxiety, and “Triumph Over Fear “, by Jerylin Ross was the one I read. It had some insights into a very severe case of agoraphobia. I also bought Dr. Claire Weekes’ first book, which addresses both, found a free mantra meditation group I could walk to and finally I got my first ever iop order of v delivered, and then I was better able to apply the techniques I learned k and coped better in the library gig. I then found a f2f where I lived to get a legit ar ex. After a different situation worsened the anxiety, and the doctor tried telling me the book wasn’t working as well as I thought, I bought Dr. Weekes’ second book, and although the agoraphobia wasn’t my problem anymore, it does give it more focus, but is IMO, a better read for anxiety in general than her first book.

I think your agoraphobia is something that you may have more power to address than someone else’s cognitive decline. I definitely understand how hard it can be to have to contend with both together! But the books give some encouragement that not only must some of it, if not all, be treated, but that it is indeed possible, regardless of how long and how severely it has been suffered. I wish the shutdowns of 2020 hadn’t happened, because it made shut ins of many! Even well adjusted people.

Back to the dementia, I just happened to be trying to cope with my relapse of isolation, so I walked to a nearby public library. As I perused the new book section, a title jumped out at me, “ The 36- Hour Day “, Mace & Rubin’s. It’s a very depressing read, but I am learning a lot about this. I really wish I didn’t have to learn it, but knowledge is power, and all. I want to hurry up and finish it to get it over with and then return, so I won’t dwell too much on this and feel so sorry for myself.

I don’t live in a good area these days, can’t find a f2f, so my excuse for staying in is the terrible noise, congestion and very loud dangerous drivers. I had the excuse to go out for walks because of unseasonably warm weather that I felt compelled to make the most of. I think maybe finding the right motivation for getting out even a little bit is probably the key.

Best of luck.