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Elderly parents

I am having THE worst time. Long- sorry

92 replies

Kenworthington · 31/03/2020 21:55

So, I posted a bit about this on an old thread in the dementia threads. But this board is busier so here I am. Anyway.
Bit of back story, my dad is end stage vascular dementia/Alzheimer’s. He’s been in a home for nearly 5 years now and is close to dying. I was told this back in December. He doesn’t really eat, completely immobile, doubly incontinent, doesn’t speak etc etc. Despresing and sad but he’s had it for around 15 years. We are already at 11 years post diagnosis. Never ever expected he would go on so long with it but he had it early in his early 60s.

Meanwhile, my mum. So she’s 81. Up until August/September time last year, she was quite active, going out on the bus independently, looking after herself. She’s type one diabetic. Around sept things started going downhill- several things happened in quick succession-
*she developed a really bad pain in her hip/leg. Could barely walk, became very unsteady, wasn’t sleeping. After many many trips to the Gp and an x ray they discovered she had severe osteoarthritis in her hip. After a few physio sessions where she was give exercises to do at home, it slowly eased. The pain went away but Walking was still not good. She started using a stick. Very shuffly. Around this time she had already stopped going out independently as too wobbly.

  • then she developed extremely swollen feet/ankles. She went to doctor. Saw a new qualified doctor who said it was due to her varicose veins. I didn’t think this was true. She’s had the veins forever and has never had this problem. She is also tiny. You could see it wasn’t a usual thing for her. So I took her back and said I didn’t belive that was the cause and asked them to check her heart. Another doctor came in and checked and checked her heart and her chest. Fluid on chest. It was agreed that her heart was failing . She was put on various meds to sort the heart and remove the fluid.
  • I started noticing her memory was getting bad. She started asking me stuff over and over again. I just knew this was the start of dementia. It’s got worse and worse.
  • she became isolated and needy. She needed me every single day, for hours on end. She wanted to do the same thing every day. She would be depressed if she thought I wasn’t going over and difficult if I was Poorly or something and had to cancel. There were many many trips to and from the doctor. The doctor and diabetic nurse became concerned about her insulin/blood sugars . She still seemed able to Anaheim it all herself.
  • we saw a consultant at the hospital who thought vascular dementia was probable. He did a brain scan anyways o tile anything else out and we were due back at hospital in May for memory clinic for official diagnosis.

Fast forward slightly to two weeks ago. I knew the ‘isolation’ thing would be tricky for her and as such I was going over every other day rather than every day. And I was just going and sitting with her and having a cuppa rather than our usual trips out to the cafe and supermarket. I could tell she was getting more depressed and gp agreed to put her on antidepressants in her next pill pack.

Now the big problem:
I saw her briefly the Thursday before lockdown. And sat morning she text me early to say she as fine and not to go over and shed see me the next day. On a whim I decided to pick her up some treats and drop them over. When I got there I couldn’t find her straight away then found her lying barely conscious on the bathroom floor where I thought she’d perhaps had a hypo. She was talking nonsense and crying. I tried to get her up but just couldn’t do it. She was a dead weight, and pouring with sweat. Ambulance came and as soon as they turned her over she was totally grey and one said to the other ‘she’s going to go’ Sad. So anyway eventually they took her off to hospital and I still really thought she’d come home that night. I went back in in the pm and took her some clothes etc. By which time she wa sin the acute medical ward. Late that night I had a phone call from the doctor to say they’d discovered she’d actually suffered a massive heart attack. It was clear they expected he’d to die. I went in a few times the next day. Becaus if the virus we were only allowed in one at a time for up to an hour. Also saw her in the Monday. Then- lockdown. So she’s been in hospital now for a week and a half. She can’t have any visitors. She’s getting more and more sad and depressed and confused. They moved her yesterday to a small community hospital. Which is miles away from me. And now we are waiting on a room in my dads nursing home. Which she doesn’t know she’s headed for but there’s no way she can go home to live alone now. Today on the phone she asked me about her mum and could I check on her Sad - she died 17 years ago.
Anyway I don’t know what the actual point is of this, perhaps to just get it all out so I can return to it. I am SO stressed and anxious. I’m an only child and I have to sort it all out. There’s too much. She’s going to hate going into the home but the three carers a day they are offering me (becasie they want her out of the hospital) is going to be nowhere near enough, esp as they often don’t turn up and they don’t stay long. I also know how resistant she is to having carers in the home. She looked after my dad mostly alone apart from support from me wat longer than she should have. I mean she’s not going to get better. It’s going to get worse and worse and it’s all so fucking unfair .

Sorry about the monumental essay and now I’ve got it all out I’m afraid I’m going to do a terrible thing and go to bed because I’m emotionally shattered but if you do reply thank you so much and I promise I’ll be back tomorrow.

OP posts:
CMOTDibbler · 09/04/2020 11:05

Leave it to them - they are the experts in dealing with it, and you talking to her could just confuse her more.

Kenworthington · 21/04/2020 09:59

Well two weeks in and it’s not getting better. I’ve spoken to her on the phone a few times and she’s SO rude to me, she’s furious she’s there, doesn’t understand why she couldn’t stay in the 2nd hospital owhuxh she liked, she wants to go home, STILL won’t let anyone unpack her bags, on and on and in at me furious about how I’ve stuck her there and it’s horrible , she hates it, why would I do that to her. I know it’s he dementia, I know it’s hard and confusing for her. I know all this but it’s so fucking hard. I don’t think it’s doing her any favours talking to me on the phone but if I don’t ring she get st hem to call me for her. And she’s so horrible to me. I know I’ve made the only decision I could and I had to be a bit firm with her in the phone yesterday. She’s still asking about her mother. Still not mentioned my dad who I think she has forgotten exists. I called the care home a manager afterwards yesterday and she said she’s fine with them and yes she does see people. One of her things was she was stuck in the room and doesn’t see anyone. Apparently she’s seen theee people in the past hour. She had forgotten. I can’t believe how quickly she has deteriorated in the past 4 weeks. 4 weeks since she had her heart attack. I don’t know how long she will survive in there. She’s so agitated and cross on the phone, I wondered whether she’s headed for another heart attack the way she’s carrying on. I have requested a phone call from her new gp on Monday to discuss medication as I feel really she should be on some dementia medication or at least some kind of mild sedative to calm her down and make her a bit more compliant. It’s just so bloody hard.

OP posts:
CMOTDibbler · 21/04/2020 10:28

It is bloody hard, and behaviour you could shrug off from your toddler who is angry you are doing the right thing for them is soo much harder when its your parent.

If the manager says she is OK with them, then maybe just keep to a stuck record on the phone 'the doctor says you have to be there' 'Not until the doctor says you don't have to be there' 'I'll have to ask the doctor about that' and a swift redirection on the I haven't seen anyone to 'the daffodils in the garden are beautiful' or some other topic. And its OK to be firm. And to have a cry afterwards

AwrightDoreenTakeAFuckinDayOff · 21/04/2020 10:32

No words to say that will make this better. I’m sorry this is so hard for you.

Take heart that she’s fine with the staff and also with others. It sucks that you are getting the outbursts but as long as she is mostly fine the rest of the time, it may settle down. Two weeks isn’t long In terms of trying to settle - although I bet it feels that way. Sad

You know this isn’t your mum but her illness. It is just so hard.

Dementia is a bastard. Flowers

RandomMess · 21/04/2020 11:50

Just big hugs, you need to emotionally detach.

Grieve for the Mum you did love and realise this is an imposter that is getting the best care possible.

Thanks
CMOTDibbler · 23/04/2020 10:15

@Kenworthington how is it going?

Kenworthington · 23/04/2020 17:29

@CMOTDibbler hello! Ah thanks for asking. I’ve not spoken to mum for a couple days. But the home rang yesterday to say they’d called the doctor because her blood sugars were really high and she hadn’t slept much the night before and was confused - ALL total Normal for her! Oh well. I did ring today but she was actually outside in the garden with one of the carers. So I’ll try and ring and speak to her tomorrow. I don’t imagine she’ll be very sweet with me . I also phoned my dads home and was told they have three confirmed cv cases in his unit which adds another layer of worry. Prob a good job they didn’t have a room available for my mum!

OP posts:
LockdownLucy · 23/04/2020 17:35

Just to say this sounds absolutely harrowing. You're right it's the Dementia and her being very poorly making her so horrid to you. She's loved and looked after as best as is possible at the moment. Not every elderly person is as 'fortunate'. You deserve a big hug and lots of Flowers Wine Brew Cake

CMOTDibbler · 23/04/2020 19:49

Its good she's been out in the garden. Personally, I might not worry about calling her unless she is agitating for it

Kenworthington · 24/04/2020 21:40

This evening I got an email from mums home asking me about end of life care plan and does she want to be buried or cremated and whether she has a funeral plan. I know they need to know but does it really warrant an email? A bloody email fgs at7pm on a Friday night?? It makes me anxious that it’s perhaps a bit of an urgent request. It strikes me as quite an insensitive way of doing it- surely a phone call would have been marginally more appropriate?!

OP posts:
CMOTDibbler · 24/04/2020 21:46

An email is an awful way to ask that. Mums home told me that they would have normally done a care plan etc face to face and that they were really sorry to have to do it on the phone - and were very sensitive about it

Kenworthington · 24/04/2020 21:50

Yeah that’s what I would have thought. It was really bluntly written too. I am going to reply tomorrow giving the information but also stating I think it’s a bad way to go about it. I did my dads face to face years ago, but I remember having the call from the gp about Dnar and being quite shocked at the time. It just seems odd that it is apparently so urgent they need to email me about it. That was the feeling I got from it anyway but I could be wrong. Perhaps they also have Covid positive residents but don’t want to say

OP posts:
CMOTDibbler · 24/04/2020 22:04

It could be that they have been told they need to have these things in writing for all residents, and its a scramble to get it all. I was surprised to be asked about burial/cremation to be honest, it did seem a bit much when (at that point, unfortunatly its different now) mum wasn't end of life

Binglebong · 24/04/2020 23:09

I just wanted to give you a hand hold having been in a similar situation. It does sound as if the dementia has got a hold on her but it's also worth asking them to check for a UTI. They should do that automatically but it sounds as if there is confusion that she's hiding under anger. That can often be a cause.

Beyond that are there any things she might like from her house to make her feel at home? I know you've taken a load of stuff already but is there anything you might have missed? We found pictures to be a help - she couldn't really see them but knowing they were there was a comfort. Favourite food can help too.

You are doing the right thing - I'm sorry it's so hard.Flowers

Kenworthington · 25/04/2020 09:48

@Binglebong thank you for your reply. They’ve checked for uti and there is none. The dementia thing has been rolling on for months, suddenly starting last summer. It’s just got worse and worse with all these changes and moving around.
I’ve take pictures and photos and some of her faux plants in pots. They’re all I. Her room. She won’t let them unpack her clothes though!

OP posts:
MereDintofPandiculation · 25/04/2020 10:45

Our care home have done the same thing about checking last wishes - had to do it for all residents, so it must have been a bit of a scramble for them. They did it by phone, but that has the downside that your tummy goes into a knot as you see who is calling, and doesn't quite subside even though they start the call with "your father's fine..."

We haven't got any Covid patients, but it's still a really busy time for them. You're right to give feedback on how it made you feel, and how they could have done better, but remember they're having an amazingly difficult time at the moment.

exiledfromcornwall · 25/04/2020 13:10

This sort of thing must be standard practice. I had an email from my DM's home asking what our preferred undertaker would be in the event of her passing (we were already past the point of end of life wishes, which had been dealt with a while after she first went in there). The email did start with the statement that she is well, and that there were no known CV cases in the home. I personally didn't mind too much the email approach, as PP said if the phone goes and it's the home's number showing up your anxiety immediately goes into overdrive.

MereDintofPandiculation · 26/04/2020 12:05

I had an email from my DM's home asking what our preferred undertaker... !!! I've not even thought about that!!

Kenworthington · 27/04/2020 14:51

Just had another unpleasant phone call from mother. It’s like taking a phone call from an almost stranger who doesn’t like me very much. I’m so depressed with it.

OP posts:
Rinsefirst · 27/04/2020 15:51

Ken This is your moment to stay strong and push her to the back of your mind.
Can you screen your mum's calls so you don't take them? If she's in pain, angry and has dementia outbursts, her calls are never ever going to be pleasant. Even before you pick up the call you know what you are going to get.
I'd ask the carehome team to stop her calling you for the next fortnight / ever so you can get a well earned rest from her constant demands. There are countess threads here where others have been advised to do the same so you are not a bad daughter. You are a great daughter , but you are right, illness has turned your mum into a stranger and presently, this stranger is causing too much stress to be tolerated in her present state.

forgetthehousework · 27/04/2020 16:30

This is so hard for you Kenworthington and I join with everyone else in telling you you're a fantastic, caring daughter.

In a similar situation I remember standing outside the care home lounge watching elderly relative having a great time, joining in a singsong, laughing, smiling, arms waving in time to the music, feet tapping (I'm sure you get the picture).
And then she saw me walk in and instantly her hand was up to her brow, very dramatic, first words were "it's so noisy in here, but they won't let me leave, everyone is horrible". Later complaints included nothing to do, no- came to see her (I know immediate family visited every day and were very concerned that she was so unhappy).
As long as the care staff at your mothers home say she's all right with them, try not to worry - which I know is much easier said than done. And don't worry whether she let's them unpack or not, I'm sure the staff won't mind getting things from her suitcase.

Take care of yourself and have a virtual hug.

AwrightDoreenTakeAFuckinDayOff · 27/04/2020 17:03

Absolutely everything in the above posts.

You are a fabulous daughter loving someone who is no longer your mam.

It feels hard because it is. It is also unfair. But you are being the best daughter you can be. Your wee bit of mum who is still in there must be so very, very proud of you Flowers

Kenworthington · 30/04/2020 12:35

I phoned mother today and she was happy and perky and almost, dareisayit, ‘normal’. Happy day today. Am going to savour it while it lasts. She even asked after the kids today Smile

OP posts:
AwrightDoreenTakeAFuckinDayOff · 30/04/2020 12:57

I’m glad you have finally got to get your mum today ken

Lovely to hear that you feel good with the world Smile

Honeyroar · 30/04/2020 13:58

I’m so glad you’re having a better day. You’ve had a really rough time. If it’s any consolation we had very similar with my mil when she went into a dementia home. We were told not to visit or ring for the first fortnight because it unsettles a lot of residents. Within a few months she settled down, despite always asking to go home (but didn’t know where home was). We had some of our nicest times after that, when she was well looked after and we could take her on trips (obviously you can’t!). You’ve done what’s right for you. Unfortunately she will never understand that or thank you for it, but you have. 🌺🌸🌼🌻