Caregivers’ chat

May it all resolve in the best way possible for everyone involved. A difficult situation. May you have the patience and strength for it all.🙏
Thank you!

DH just talked to his stepfather on the phone and apparently she is in the downtown ER and not in ICU as the ICU is full and there are no available beds. They have her stabilized somewhat and will be moving her into a regular room at some point this evening, but at the moment he advised that my husband not come down there until she gets moved because the ER is chaotic and is also full, she is in a small curtained cubicle of the ER with only room for one person and the waiting room is full as well.
 
she is in a small curtained cubicle of the ER with only room for one person and the waiting room is full as well.
Yes, we have those overcrowded circumstances here too. The ER really do extremely stressful things and prefer as much non-necessary outside involvment, I get that.
She is in expertly hands. Good for him to have some rest/meal...
Courage, this too shall pass.
 
So DH's mom is in the hospital (again) as of early this morning. She's been there 5 times in the past 2 months, 2 of those times were in the past 4 days. It's really getting bad. There is nothing they can do for her. She's down to about 92 pounds at 5'4" (and some of that is water weight from the swelling), her liver is at 30% function from the cirrhosis, she is blind in one eye from macular degeneration, she shakes horribly (likely just from fatigue, being underweight, and everything else that is going on in her system), has a terrible cough from her ongoing MAC lung disease she has had for over 5 years that is controlled by antibiotics but will never get better, and 5 days ago she found she was no longer able to stand up without help and she couldn't walk. She's in terrible pain.

DH's stepdad went and got her a walker yesterday and picked up the muscle relaxers the doctor prescribed for her. She ate pretty good last night apparently and the muscle relaxers took the edge off. Then this morning DH's stepdad was helping her get up to use the bathroom and on the way back to bed, her legs gave out on her and she collapsed, so another ambulance ride to the ER. At one point this morning while at the ER her BP was down to 50/30 from the pain meds they gave her so she can't be in a regular room, she is going to need constant monitored care. Hub's on his way down there shortly and they are going to transfer her to the main hospital ICU downtown.

DH and I think her system is shutting down. It's really time for hospice because she can't rest at the hospital and they keep poking and prodding her trying to get blood, moving her for scans and X-rays, and she bruises so easily that she's sore from the trip there a few days ago. And the kicker is that she has said repeatedly that she doesn't want to die in a hospital, yet apparently FIL doesn't want her to die in his house, though he hasn't said so, because every time she has some sort of episode he calls an ambulance. It's time for DH to intervene on his mom's behalf. Our house isn't setup for her to come here as our guest rooms are upstairs ( plus no bathroom up there even if we could get her moved up there), and we only have our bedroom and master bath, kitchen, dining room and a half-bath on the lower level (we have a wall up between my stepson's wing of the house and our side so it's inaccessible (except for going outside of our front entrance and entering his wing through his front entrance) and it's a wreck over on Jr's side anyway, we would have to hire a cleaning crew to come sort it out, and Jr works nights, too...).

And then there is DH's stepdad, who had quadruple bypass surgery over this past Christmas and also had shoulder replacement surgery in March. He went a few weeks back to his cardiologist and found out that 3 of the 4 bypasses have failed and they can't go back in and fix it. He has congestive heart failure and his heart is at 30%. He isn't supposed to drive (yet he stubbornly still does), he is supposed to avoid exertion and going up and downstairs--which he ignores, and he basically is a ticking time bomb, and we have offered to run errands and cook meals for them but he refuses (we did all that during the time he had his surgeries and after, while he was recuperating, because he simply wasn't capable physically) but now he thinks he is superman and is delusional, and there is just no talking sense into the old coot. Sigh.

So DH's on his way down to the ER shortly and I am going to eat and shower, then go downtown when they transport her and get her settled, which could be several hours. I guess I need to rearrange my work schedule for this week. No idea how long she will hold on, no idea if they will run tests and send her home (again) with the statement, "There is nothing we can do for her" (like they have said each time in the past few months).

And to top it all off, youngest stepdaugher and her fiance are getting married on August 4, which is MIL's birthday, so if she passes on or is too gravely ill to attend, it is going to be a very sad occasion instead of a joyous one.
Depending on how you 2 feel about taking on the burden of caring for her, a hospital bed can be set up through her insurance, and possibly even 24 hour hospice care. You'd probably have to shove furniture up against the wall like I had to do when my stepmother came home after her accident and still needed a hospital bed.

Has anyone actually asked her if she wants to go on hospice? If she's in that much pain, then she might welcome it. They will probably take her off pretty much everything other than pain meds, and may very well up those to the point that she sleeps nearly all the time and more than likely will pass peacefully in her sleep.

I'm so sorry your family has to go through this. It's so hard to watch loved ones suffer.
 
Depending on how you 2 feel about taking on the burden of caring for her, a hospital bed can be set up through her insurance, and possibly even 24 hour hospice care. You'd probably have to shove furniture up against the wall like I had to do when my stepmother came home after her accident and still needed a hospital bed.

Has anyone actually asked her if she wants to go on hospice? If she's in that much pain, then she might welcome it. They will probably take her off pretty much everything other than pain meds, and may very well up those to the point that she sleeps nearly all the time and more than likely will pass peacefully in her sleep.

I'm so sorry your family has to go through this. It's so hard to watch loved ones suffer.
We just got back from the hospital. She's in a regular room now and they've got her doped up on a low dose of oxycodone. More tests tomorrow. FIL stepped out for a minute and she told us she signed a DNR and said she hoped we understood, she's just tired of everything, tired of doctors, tired of the tests, tired of the pain. Of course we told her we understood Hub is going up there tomorrow and will try to talk to her alone when his stepdad isn't hovering about. She seems less willing to talk when he's around.

Edited to add that my DH noted that she is on the "Don't really care" floor with a lot of geriatric folks...I don't think that's true of the staff, as the nurse and aides we met were quite kind and caring, he was referring to the hospital being a business and investing more time and resources on those who have more of a chance of living a few or several more years. Plus they put her in a regular room that is shared (with a woman who had obvious lung issues, perhaps COPD). Apparently the ICU is still full and they felt she was stable enough to be in a regular room. Also wanted to add that she has excellent insurance...the last time she was in the main hospital she had a room by herself on a different floor. IDK.
 
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Dementia drugs are good at maintaining functioning, they're not good at repair

I think dementia drugs only work for certain types of dementia such as Alzheimers. They don't work for vascular dementia.

I'm not sure what you can do re your Mum (other than what you have already done). Its different for me as Steve lives with me so I can automatically help him and monitor him. When someone lives alone there is little anyone can do if they refuse help. And yes, things may end up in disaster if she is left alone. Steve managed to melt an electric kettle on the gas hob when I was in hospital. He was trying to make a cup of tea. It could have ended in a major fire. although luckily it only resulted in a burnt wooden worktop and having to buy a new hob. My daughter was here but had let him sleep in my downstairs bed whilst she slept upstairs. Thus she wasn't alerted to him going into the kitchen. The weird thing is we have never had a kettle which goes on the hob!

It doesn't sound as if your Mum is anywhere near this stage yet but nevertheless there are probably dangers.
 
I think dementia drugs only work for certain types of dementia such as Alzheimers. They don't work for vascular dementia.

I'm not sure what you can do re your Mum (other than what you have already done). Its different for me as Steve lives with me so I can automatically help him and monitor him. When someone lives alone there is little anyone can do if they refuse help. And yes, things may end up in disaster if she is left alone. Steve managed to melt an electric kettle on the gas hob when I was in hospital. He was trying to make a cup of tea. It could have ended in a major fire. although luckily it only resulted in a burnt wooden worktop and having to buy a new hob. My daughter was here but had let him sleep in my downstairs bed whilst she slept upstairs. Thus she wasn't alerted to him going into the kitchen. The weird thing is we have never had a kettle which goes on the hob!

It doesn't sound as if your Mum is anywhere near this stage yet but nevertheless there are probably dangers.yet.
I don't know what type of dementia she has so no idea if she'll benefit. Personally I don't think it's vascular just because it started many many years ago and the vascular type tend to be later.
Tbh it looks too late regardless 🤷‍♀️

I very much admire your love and commitment to Steve. I hope you have some back up and respite available to you.
But my experience of dementia is that whilst there's a relative involved you're on your own. It's IMO wrong to let people break themselves caring for others (not that you are, it's just something I've seen ad infinitum) but unfortunately unless someone's minted there's not much help available. He's so lucky to have someone as strong as you to care for him.

Yep there are certainly dangers. She is on that border where something bad will happen but hasn't yet. I've explained she wouldn't be considered a safe discharge and she'll likely end up in hospital and discharged to a cr*p nursing home unless we have something in place at her home but she categorically refuses to accept that so 🙄🤷‍♀️

Bet your daughter was freaked out by that little incident!
 
unfortunately unless someone's minted there's not much help available. He's so lucky to have someone as strong as you to care for him.

In fact Steve receives around £400 per month attendance allowance (which I could spend on care workers). Its not means tested. That is the amount for those needing night as well as day care. Your mother would most likely be entitled to basic attendance allowance (not means tested) of around £200 per month. But she would need to apply for it. Or someone would need to apply on her behalf. But there is little point if she refuses any help and doesn't need the extra cash.

If he forfeits this allowance he can have care workers attending him. The cost (up to a ceiling depending on income and savings) would be deducted from his pension income, as it was when he was in full time respite.

Yep there are certainly dangers. She is on that border where something bad will happen but hasn't yet. I've explained she wouldn't be considered a safe discharge and she'll likely end up in hospital and discharged to a cr*p nursing home unless we have something in place at her home but she categorically refuses to accept that so 🙄🤷‍♀️

The big problem is that if someone lives alone with advancing dementia, unless they have round the clock live-in care then accidents and incidents can happen. Even if a care worker visited every day it wouldn't prevent that happening. Understandably, people want to stay in their own homes and as long as they are able to state this, then there is nothing anyone can do (short of sectioning them). Its her right to live where she chooses. Difficult as it may be, perhaps you need to give up trying to help? You have made your case and done everything you can to explain things to her. You can't do more.
 
In fact Steve receives around £400 per month attendance allowance (which I could spend on care workers). Its not means tested. That is the amount for those needing night as well as day care. Your mother would most likely be entitled to basic attendance allowance (not means tested) of around £200 per month. But she would need to apply for it. Or someone would need to apply on her behalf. But there is little point if she refuses any help and doesn't need the extra cash.

If he forfeits this allowance he can have care workers attending him. The cost (up to a ceiling depending on income and savings) would be deducted from his pension income, as it was when he was in full time respite.



The big problem is that if someone lives alone with advancing dementia, unless they have round the clock live-in care then accidents and incidents can happen. Even if a care worker visited every day it wouldn't prevent that happening. Understandably, people want to stay in their own homes and as long as they are able to state this, then there is nothing anyone can do (short of sectioning them). Its her right to live where she chooses. Difficult as it may be, perhaps you need to give up trying to help? You have made your case and done everything you can to explain things to her. You can't do more.
Yes Saturday was my last attempt. It is her life and she has chosen what she wants.
As I said before I'm not the sort to ride rough shod over someone's life choices because I think they're daft so long as they understand what they're choosing and I believe she knows.

And yes a carer is unlikely to be there when something bad happens but they could feed her and her dog n drive her about so she wasn't housebound. They'll also be able to let us now when the deterioration has moved to a level they can't manage.

Thanks for the attendance allowance advice. I was not aware of the non means tested allowance. Sadly where she lives that £200 might buy her an hour a week. Probably not even that. Like you say it's pointless if she's refusing all help!

I'm gonna keep going with the legal stuff to get the house in her name so there's money available and I'll take her to her memory clinic appointment then hopefully it'll be November and that's when I'm handing it over to my brothers to do a turn.
 
Quick update on my folks - workers at the facility have taken to separating my parents for a half-hour or so a few times a day; otherwise, they sit and argue back and forth constantly and keep each other aggravated.

Mom did thump one of the other residents because “I don’ like ‘er smart mouth!” and Dad did try and kick one of the nurses as he was being wheeled to dining room, but the status call we have with them downplayed it all. Sounds about like a classroom full of kindergartners.
 
It is her life and she has chosen what she wants.
That seems to be reasonable,yes. My Mom refused to get herself for medical check ups a year plus ago, when she was loosing blood, and she still refuses. I was baffled, and asked for advice. A doctor in the opposite shift told me I can call the ambulance, let them take basic data and advice,and if she refuses to go to hospital,they have her sign a paper, and I have done my part of the helping package, the Er staff did theirs, and she conciously refused, so that is it.
Those really are difficult situations, and I feel with you. May we all take it the best we can amd may our loved ones suffer as little as possible.
 
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