Terminal Restlessness, anyone familiar?

Islegirl268

Hi, 

This is my first time attempting any kind of forum, but I need help.  My mother is in the beginning of Stage 7, or so the doctor says.  We (my sister and I), are full time in my mothers home providing care around the clock.  Until recently (because of our lack of finances and the PANDEMIC) have not reached out for help, and now we are in the all out throes of a new slope of decline with my mother.  A Medicare hospice assessor came 2 weeks ago, and denied us assistance because she could walk with a walker from one room to another.  He came on a Sunday morning, at 9:30 am, you couldn't have picked the day or hour better that my mother would be probably in the best shape for 30 minutes out of the week.  

Nov 12, marks my mothers rapid decline. November 12-Current.  She was in the ER on Nov. 17, and we've had the police come for welfare checks a couple times as well as the EMTs check on her.  We've followed through with the Doctor, and it is not getting any better.  We are in a holding pattern now with Medicaid to hopefully have some in home help, but even then the representative we talked to sounded as if they don't have enough employees accessible.  

It's been a decade of taking care of her, just the 2 of us, 6 of those years one of us constantly being with her so she's never been alone.  The last 2 its required both of us to be with her.  

Now, what I believe she is going through is "Terminal Restlessness", a lot of fidgeting, pacing, wanting to eat more than normal, freakish bursts of strength, then complete lack of strength to stand, constant wanting her mother, wanting to go home (even though she is in her own home) and complete insomnia.  after nearly 50 hours awake she's currently sleeping now.  For how long that is a mystery.

I've tried all the suggestions of diversion, calm environment, listening and appeasing hallucinations...but over a month of this is wearing me the most ragged.

Does anyone have ANY advice on how to do this alone?  

I'm so tired, exhausted is the better word.  We have no family with the means to help (most are dead), we have no money to provide her with anything right now.   It seems we are in the matrix of the "system" that is not showing any signs of hope.

Any suggestions of how to help her would be MORE than welcome.  

Sincerely, Sleepless in Seattle

M1

You could try asking for another assessment from a different hospice agency.  This comes up not infrequently, and it depends what other conditions she might have besides dementia.  There was a recent thread about this, it needs to be coded as "degenerative disease of the brain."

mommyandme (m&m)

I think I would try hospice again as there have been changes since the last visit.  Try a different hospice perhaps.  

I’m so sorry that you are experiencing this pain and loss.  Coming to this forum has helped me greatly, I care for my mother at home.  I do have some assistance or I couldn’t manage at all.  

Glad you found this place.  Keep in touch. 

loveskitties

As others suggested, see if there are other hospice in your area who will come for an assessment.  Often times one will reject while another will accept.

​fesk

I'm sorry to hear you are dealing with all of this. If you haven't already, I would look to see if there are any reasons why the decline is occurring - medication changes, UTI, bloodwork, other physical reasons, etc. If that has been done and there are no other reasons, have you discussed new medication with the doctor to help her current symptoms? There will be no perfect answers, but hopefully something to relieve some of her current symptoms and provide you with some much needed rest.

Islegirl268

Thank you.  I'll look at it. 

CaringMate

Islegirl..."Senile Degeneration of the Brain" is the diagnosis that allowed my husband to receive in-home hospice care.  I had him home receiving hospice care when the "Terminal Agitation" began and I have to say, it freaked me out.  He wouldn't and couldn't sit still and  he reminded me of the Energizer Bunny in the worst possible way.  The hospice charge nurse labeled what was going on and told me that is what happens to the person when they hit the last and final stage of dementia.  I've never experienced anything like it and never hope to again.  The only way to settle him down was to sedate him and Hospice decided it was safer to do that in their facility versus our home.  It broke my heart to have him transferred, but I knew the end was near and it was the right thing to do for him.  Once in hospice, they took him off of all the medications the neuropsychiatric facility placed him on and just placed him on sedation.  He passed peacefully five days later in my arms.  It was the hardest thing I have ever done but after 10 years of an insane journey with Frontotemporal Dementia it was the kindest and most gentle way for him to go.  My advice to you is to first get the proper diagnosis from the doctors and then armed with a correct diagnosis, contact other hospice agencies.  My prayers are with you!

LevisHouse

I've been working with a social worker who is a dementia specialist (north of San Francisco) and she has been an absolute lifeline for me - connecting me with resources and providing advice. She even accompanied us on a medical visit to UCSF and was incredibly helpful. She is used to talking with care providers and attorneys and helps break things down for me when I'm too overwhelmed to take it all in. She is with JFCS, which is a national organization. Perhaps there is someone like this in your area? I know it can be exhausting to establish another relationship, but this one has probably been the most valuable to me. And she is free of charge.

Love&Light

@levishouse, can you share more details about JFCS and how to get in touch with this person?

LevisHouse wrote:

I've been working with a social worker who is a dementia specialist (north of San Francisco) and she has been an absolute lifeline for me - connecting me with resources and providing advice. She even accompanied us on a medical visit to UCSF and was incredibly helpful. She is used to talking with care providers and attorneys and helps break things down for me when I'm too overwhelmed to take it all in. She is with JFCS, which is a national organization. Perhaps there is someone like this in your area? I know it can be exhausting to establish another relationship, but this one has probably been the most valuable to me. And she is free of charge.

Islegirl268

Update 1/11/2021

My mother passed 1/6/2021

The agitation was unsurmountable, and after 6 days in the ER my mother passed.  At least she appeared somewhat more comfortable the last day and a half.  

After sitting with the initial relief, I am now haunted by her death experience.  I'm trying to find solace in that last day and a half.  

It was just upsetting to see her one, not be admitted to a real room (I blame Covid for taking up so much space in our already overburdened hospitals/and unvaccinated persons), and two, to see her not get the adequate care in the ER.  

No-one  should have to lose a parent or loved one to this disease....I wish I could have done a better job.

Thank you all for your kindness and recommendations, I wish I could have delivered.  

Tfreedz

Islegirl, I am so, so sorry your mother’s passing was so traumatic. Please keep the last day and a half and her peace at the forefront of your mind. You did the best that you could in such a quick timeframe especially with Covid hospital issues. You and your sister were devoted to caring for your mom for several years, she must have been a wonderful mother to raise you both to be so caring. I hope that you can take the time time to heal yourselves from all that you have been through. Sending you big hugs and warm thoughts as you start to rebuild your lives.

abc123

My sincere condolences to you and your sister on the loss of your dear mother. I am so sorry for what all three of you had to endure. This disease is horrible. You and your sister did your best and that’s all any of us can do. You all are in my prayers.

harshedbuzz

Islegirl-

Please accept my condolences of on the passing of your mom. 

I am sorry that you and she didn't not have a gentler experience in her passing. I hope in time, you can remember better times and put the last few days in the context of the care you delivered prior. My own dad had aspiration pneumonia and I was initially haunted by the sound of his breathing the last couple times I saw him, but it did get better for me over time. I hope you have a similar experience.

HB

mommyandme (m&m)

I’m so sorry for the pain you are feeling from losing your mom this horrible way.  

Her peace and comfort the last day and a half says to me she finally worked through the troubles within herself and left knowing she was loved and cared for. 

I hope you feel some peace yourself soon.  Your mother was blessed to have you.