Caregivers’ chat

Morning Glory said:
In general, he seems worse and I'm having more and more trouble communicating with him.
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I'm sorry to hear that. Unfortunately, that tends to be how dementia pans out. At least he's sleeping; my dad used to wake up at 3am banging on the door and shouting that he wanted to go home. (He was home). The memory just gets worse and worse.
 
It certainly does.
Phoned my mum today as the recent car accident she had meant the police towed her car and she now has no way of getting about. She seemed ok, told me the pertinent parts and was rational.
Then we had the same conversation five times.
Her GP surgery called again, another friend has contacted them requesting my contact details to tell me how bad she is, I said yes pass them on but let her know she’ll have to join the queue!

Problem is she does as far as I’m concerned (and the GP surgery agree) have capacity, she knows what she wants, which is to be left alone thankyou very much, she seems sensible and apart from a car accident has done nothing that you would consider unsafe.
Well the forgetting to eat and turning into a bag of bones is a sign of neglect but it’s not considered unsafe.

She just can’t cover up her memory loss anymore so now more of her friends are fretting and wanting me to DO SOMETHING. Even though not one of them will speak to her about it because they’re afraid she’ll cut them off and I’ve explained if I push too hard for her to accept help then I’m told to leave too. What am I supposed to do, drag her kicking and screaming to a dementia care home when she’s clearly not at that stage yet?!

Anyway. Heyho. I’m sorting her a monthly phone contract so at least she will be able to ring and if she get lost I’ll be able to locate her (if she’s taken her phone that is) and drum roll please…. I’ve managed to get everyone on board with the idea all recriminations for her past behaviours are now pointless and we have to treat her as the person she is now - someone with dementia who needs kindness and empathy. That’s a major turn around for everyone, she’s behaved pretty poorly over the years and her family do not like her so I’m proud of that bit of work because if we are going to have to take care of things then it’s easier if everyone can just be nice to each other.
 
SandwichShortOfAPicnic said:
Problem is she does as far as I’m concerned (and the GP surgery agree) have capacity, she knows what she wants, which is to be left alone thankyou very much, she seems sensible and apart from a car accident has done nothing that you would consider unsafe.
Well the forgetting to eat and turning into a bag of bones is a sign of neglect but it’s not considered unsafe.
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Well its a real problem when people with dementia live alone and won't get help. Its different here because obviously I can look after Steve. For a long time now he has been unable to survive on his own and would be in care permanently if I weren't here. Your Mum is in denial its seems so won't accept help and is also quite rational at some level. That intermediate stage is very difficult. I used to have a tracking device (a watch) that Steve wore when he was still at the stage of being able to be semi independent.

Was the car accident her fault?
 
Morning Glory said:
Well its a real problem when people with dementia live alone and won't get help. Its different here because obviously I can look after Steve. For a long time now he has been unable to survive on his own and would be in care permanently if I weren't here. Your Mum is in denial its seems so won't accept help and is also quite rational at some level. That intermediate stage is very difficult. I used to have a tracking device (a watch) that Steve wore when he was still at the stage of being able to be semi independent.

Was the car accident her fault?
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My fifth attempt to reply to this post 😂

Yep a strong case of denial but not real denial because she knows but just can't admit it. Her covering behaviours are numerous.

I’ll talk to her again when she comes down 6th June. I will lay out what the pathways are and the what is going to happen on the one she’s choosing. I’ll also explain a nicer way to do things.
She may accept help after that but it may have to wait until her appointment at the memory clinic and the stark medical diagnosis is in front of her. Even then it could still be a “no leave me alone” response 🤷‍♀️

She has an apple watch but doesn’t wear it so the phones the closest thing to any chance of locating her, when we get to that stage.

Driving wise she’s been an accident waiting to happen for a while.
The first thing she said was “it wasn’t my fault” and has stuck with that.
But the police called an ambulance and insisted she went to hospital and impounded her car, when she went to get it back they said no so I’m sure theres more to that story than I’m hearing.
She said repeatedly she’s glad no-one was hurt and she was going to give up driving anyway.
I’m sure it was her fault.

She also said “How could you forgive yourself if you carried on driving and hurt someone?”
When I asked her that in January she just shrugged and did carry on driving even though people refused to get into the car with her, she ignored me when I said it was time to look at alternatives. She even threatened me before her doctors appointment that if I got her driving licence taken away there would be big trouble.

Thing is I got in the car with her to see what her driving was like due to her friends complaints it was almost flawless so I had no grounds to go any further.
I’m relieved that bits over!

Spent a large portion of the afternoon dealing with her solicitor, the office of the public guardian, the land registry, her GP surgery and trying to sort out her phone. For a change it mostly went well and I got a lot done so thats nice.
 
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karadekoolaid said:
...and your next unsavoury move is to try and get power of attorney...
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She has made LPA’s twice. Unfortunately three of the four are missing and as they only issue one that’s validated (it’s like a single golden issue you must care for better than your passport)!) it’s difficult to get hold of another.

I sorted it yesterday and they’re being sent here but that’ll be £105 please, except there was no please because the man I spoke to was so exceptionally rude I really struggled to not tell him so!
 
So over the Christmas holidays FIL had open heart surgery (quadruple bypass), then in March he had shoulder replacement surgery. It's been non-stop doctor appointments for both him and MIL, but he was cleared to drive in April (even though at 80 his reflexes aren't great and maybe shouldn't be driving). So we were relieved of our chauffeur/taxi driving duties over the past several weeks and FIL was able to get them both to the various doctor appointments.

Anyhoo, he has been short of breath, dizzy, and feeling tight in his chest over the past week or so, so he went to see his cardiologist last Monday and they said something was wrong and they wanted to do a heart catheter to find out what. His appointments was yesterday (Friday). Hubby drove him and MIL because the heart cath involves going through a blood vessel in his arm and he would be too sore to drive home (plus with his dizziness he shouldn't be driving). Well turns out that 3 out of the 4 bypasses are "dead" and blood is not flowing through them, so he only has the one bypass that is still working. He has been diagnosed with congestive heart failure and has about 30% function of his heart, which matches MIL's poor liver function...and there's nothing they can do for either of them. Surgery is not an option for FIL, they said it's just too dangerous and probably the same thing would happen to new bypasses even if he was in good enough shape to withstand the surgery, so they are going to try giving him this drug Entrestro to try to improve his heart function, as well as some diuretics to keep the fluid from building up. They are also taking him off his high blood pressure medication because his BP was extremely low yesterday.

So today we are picking up groceries for them and doing some light chores around their house when we drop the groceries off. Time to put the dasher caps back on...I am sure glad we only live about 10 minutes away from them.
 
JAS_OH1 said:
So over the Christmas holidays FIL had open heart surgery (quadruple bypass), then in March he had shoulder replacement surgery. It's been non-stop doctor appointments for both him and MIL, but he was cleared to drive in April (even though at 80 his reflexes aren't great and maybe shouldn't be driving). So we were relieved of our chauffeur/taxi driving duties over the past several weeks and FIL was able to get them both to the various doctor appointments.

Anyhoo, he has been short of breath, dizzy, and feeling tight in his chest over the past week or so, so he went to see his cardiologist last Monday and they said something was wrong and they wanted to do a heart catheter to find out what. His appointments was yesterday (Friday). Hubby drove him and MIL because the heart cath involves going through a blood vessel in his arm and he would be too sore to drive home (plus with his dizziness he shouldn't be driving). Well turns out that 3 out of the 4 bypasses are "dead" and blood is not flowing through them, so he only has the one bypass that is still working. He has been diagnosed with congestive heart failure and has about 30% function of his heart, which matches MIL's poor liver function...and there's nothing they can do for either of them. Surgery is not an option for FIL, they said it's just too dangerous and probably the same thing would happen to new bypasses even if he was in good enough shape to withstand the surgery, so they are going to try giving him this drug Entrestro to try to improve his heart function, as well as some diuretics to keep the fluid from building up. They are also taking him off his high blood pressure medication because his BP was extremely low yesterday.

So today we are picking up groceries for them and doing some light chores around their house when we drop the groceries off. Time to put the dasher caps back on...I am sure glad we only live about 10 minutes away from them.
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Old age doesn't come on it's own does it.
They are very lucky you live only 10 mins away and are prepared to help as much as you do.
 
SandwichShortOfAPicnic said:
Old age doesn't come on it's own does it.
They are very lucky you live only 10 mins away and are prepared to help as much as you do.
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I hope there's someone around to help me when I get to be that age (if I need help). I see older people at the grocery store who are handicapped and driving themselves to the store and struggling to get their grocery shopping done. If I am around and see someone trying to get something off an upper shelf when they are in an electric scooter or too short (not like I am tall, LOL) I always offer to help. Same with getting their groceries out of the cart and on to the conveyor belt. At least they have people to help them get their groceries to the car. I would offer to help with that too, but I think most people would be afraid to take help from a stranger in the parking lot.
 
This is long and a bit whiny so I apologise in advance and suggest if you don't fancy a downer just skip it completely!

Tried to talking to my mum to explain where her choices will likely land her up with her memory loss but she's completely intransigent. Her firm statement is everyone is to leave her alone.

It's weird cos I can't imagine ignoring my children if they tried to help me but there's a basic low level dislike of her offspring that makes it hard for her.

Anyway I tried and my youngest brother tried. My brothers are upset but at least I'm not fighting everyone's denial anymore. Fell out slightly with my eldest brother who wasn't accepting there was anything wrong who then did a 180 on that and started bossing me like he was suddenly an expert on dementia.

I tell him in no uncertain terms he is not to patronise me and it was ridiculous that I could nurse for 25years and still apparently not know what I'm looking at or what I'm talking about.
I said you're a Dr of physics, how absurd would it be if I started telling you how to go about your physics because I read a pamphlet about some stars.

And yet here you are completely ignoring the idea that I have any experience of dementia patients. I expect to be treated with a bit more respect.

It ended on a good note just about. Now she's busy telling everyone I'm a sh*t stirrer who's contacting her friends behind her back. She also threatened to kill herself again which she does if you press the idea of getting some help.
It's worn a bit thin so I said well you're not going to kill yourself because if you were you would have done it already.
I'm completely on your side and want you to have whatever you want. I'm not the sort of person who's going to ride roughshod over you I just want you to understand with your short term memory being a bit wonky there's a route that's nicer and smoother where you stay at home for longer. Still no movement though.

Heyho. Got her phone working with a new monthly contract so she won't get cut off anymore.

I also told my brothers I can't do it all, she is really bad for my mental health because she never liked me and let me know this from a very young age. So I've said we'll have to do a year each and my year will be up in November.

They just stared at each other!
 
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Not whiny. Everyone needs to vent.

I'm sure you already know this, but your brothers probably won't take over unless they are forced to, i.e. something bad happens and you don't step in. I am an only child and have an only child, so have no idea about sibling dynamics, but do know about men in general. There are a lot of men that will step up, but more that won't without being forced.

There has been a commercial playing here recently about an early dementia patient. She's leaving notes all over the house and lists placed where they are easily seen. It's about 1 of the drugs they are using for early dementia. Is she on one of those or would take one?
 
medtran49 said:
Not whiny. Everyone needs to vent.

I'm sure you already know this, but your brothers probably won't take over unless they are forced to, i.e. something bad happens and you don't step in. I am an only child and have an only child, so have no idea about sibling dynamics, but do know about men in general. There are a lot of men that will step up, but more that won't without being forced.

There has been a commercial playing here recently about an early dementia patient. She's leaving notes all over the house and lists placed where they are easily seen. It's about 1 of the drugs they are using for early dementia. Is she on one of those or would take one?
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No she's not on anything. Am hoping she'll get something prescribed when we get to her memory clinic appointment which they say will be around august time. There's a 10 month wait for memory clinic appointments 🙄 and I couldn't persuade her to go privately.
That's a real shame because if she'd started right back when the symptoms began to show they could have really made a difference.

Dementia drugs are good at maintaining functioning, they're not good at repair and she's much further down the line than people realise.

Yer my brothers are not going to step up voluntarily but I've told them I'm looking at moving to Gibraltar and will be searching for a place there soon. I think I'm literally going to have to say NO to force their hands.

Thanks for the reply, it definitely feels better out than in!
xx
 
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.
 
JAS_OH1 said:
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.
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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.🙏
 
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