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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:
CodenameVillanelle · 31/03/2020 21:58

Oh love Flowers
This is hard. You're a good daughter. Be kind to yourself.

mineofuselessinformation · 31/03/2020 22:02

Absolutely go to bed, you poor thing.
You need to look after yourself first, because otherwise you really won't be able to look after anyone else.
It sounds like you're really beating yourself up about this - please don't.
The coronavirus brings a whole new aspect to those of us dealing with elderly parents.
It's not easy at the best of times, but this makes it even worse.
Do what you are able to do, but don't run yourself ragged, because ultimately, if you get ill too, you won't be able to do anything.
Take care of yourself. Thanks

thesandwich · 31/03/2020 22:04

I am so sorry🌺🌺. You are doing an amazing job. You can always say it’s until you are better.........
your dm may pick up- don’t give up. And be kind to yourself.

Knittedfairies · 31/03/2020 22:20

Going to bed because you're shattered is not a terrible thing; it's the most sensible thing you can do right now. I know it doesn't feel like it, but you have made the best decisions, given all you've said here 💐

Knotaknitter · 31/03/2020 23:26

I am really sorry and I hope that you get some sleep tonight. Sometimes all the decisions are hard ones and there is no easy answer.

PammieDooveOrangeJoof · 31/03/2020 23:30

I’ m so so sorry. I hope that you get a well deserved rest tonight. Be kind to yourself. You sound like an amazing daughter and with the best will in the world , there is only one of you and only so much you can do.
Try and get some rest, make sure you eat and drink and take care of yourself.

Binterested · 31/03/2020 23:34

This is such a sad time for you and it’s hard to be an only child in these circumstances. Take care of yourself as your parents would once have taken care of you. That’s the most important thing for now - they are being looked after and you must do the same for yourself. Flowers

maddywest · 01/04/2020 09:21

You sound like you are doing and have done absolutely everything you can. In the home she can be looked after properly, they can sort out all the doctor stuff, and she''ll be in the same place as your dad, which hopefully has benefits - you only have one place to visit, your mum presumably knows the staff. Can it be presented to her as 'stay here while you are ill'?
I don't suppose the home can give any idea how long it might be until a room becomes available, but do you know if there is a waiting list?

Kenworthington · 01/04/2020 10:51

Mornjng all thank you for all your lovely replies. I was feeling so down yesterday. I mean I don’t feel much better today really but.
Mum is top of the waiting list for a room. Last week they said it would be a week (so I am assuming someone is in for respite) however when the hospital rang them they said two to three weeks. So I’m not sure. I think theOT at the new hospital isgoing to liaise with them.
I know I can’t do any different. But it’s still hard and I feel guilty all the time about my mum. And sad about her because although she’s lovely I feel like she’s never been all that happy. Lived here life for her parents and then my dad and now she’s ill. I found loads of her old diaries going way back to the start of the seventies and all they document is a life not lived Sad .
Iahve health poa already in place but the OT on the phone yesterday said if they think she has the capacity to say she doesn’t want to go into a home they’ll have to take her word for it. I KNOW her going back to her own home is absolutely not the best thing for her. My mum is stubborn. There’s no way she will agree to going into a home and whilst I don’t blame her tbh, this is what’s going to be best for her even though it will be against her wishes. I do plan on saying it’s for convalescence. She will understand that. It’s just so depressing that my mum I saw last isn’t the mum that’s coming out of hospital. I can’t believe how quick the deterioration has been. I don’t even know how she survived that heart attack to be honest as apparently it was about as bad a one as it gets. She’s obviously tougher than she looks. God on 1st jan this year when dh was exited about this year I said to him this will be the worst year of my life and the one I lose both my parents in a short time and it’ll be sooner rather than. Later. He scoffed at me. Said how pessimistic I was. And although that hasn’t quite happened yet it feels like it’s not far off and that perhaps it’s probable that I won’t actually see either of them again

OP posts:
Binterested · 01/04/2020 11:15

So hard. And makes a hard 2020 so much harder for you. You have all my sympathies.

Cosyjimjamsforautumn · 01/04/2020 18:35

I didn't want to read and run but just wanted to send some virtual support as you are having such a challenging time with both unwell parents at the same time Do ensure you rest and take care of yourself Flowers
I

Eddielzzard · 01/04/2020 18:44

This is horrendous. I've been there, trying to think of solutions for when my mum came out of hospital and into a home. There's no way she would go into a home - we all knew it would be against every bone in her body - but also knew there was no way she could live at home again. So hard.

In my case my mum went into a hospice, and with quite severe dementia it was a release.

I'm sorry you're having to go through this, and with your dad as well. Yes, this is a horrible year. But you will get through it step by step. Flowers and a really big despite-lock-down virtual hug.

AwrightDoreenTakeAFuckinDayOff · 01/04/2020 18:50

I have no words to comfort you or make things easier. But one day I think I will slip on your shoes and walk in your shadow.

I’m thinking of you. And of them. What a lovely lovely job they did raising you. You are doing your best in such difficult times.

Look after yourself flower Flowers

Kenworthington · 01/04/2020 19:50

Thank you you’ve all been so kind.

So I spoke to them again this morning and they are KEEN for her to go home. Well, anywhere really that isn’t in the hospital. But.. apparently the home won’t have. A space til mid to late April. They said they can’t keep her that long. So they are proposing carers three times a day. But she has to give 5 insulin injections a day. And she’s wobbly and confused. So wen if I pick up the clack it’s not enough. They’re being difficult about whether she has ‘capacity’ as we haven’t yet got formal diagnosis. So I think they are assessing her tomorrow. They said they’d speak to her and tentatively see what her thoughts were and then I rang her. She was much more lucid today and said she’s happy in that hospital and she’s scared of going home and being on her own Sad. I said in that case would she be open to having carers in and predictably she wasn’t keen but seemed fairly open to going into the home at some point though she said she hadn’t thought about it and hasn’t been ready to think about it. Well I thought me neither tbh. She said she’ll go along with whatever I thought best and I’d know what to do. Oh god if only it was that easy. If a bed became available next week then that would be great. But I just don’t think that’ll happen so all i think I can do is drag my heels a bit with the hospital and wait it out for a bed. OR I need to go along with her going home to carers, and either I fill in the gaps or pay extra for extra carers while we wait for a bed at the home.

OP posts:
Itwasgoodwhileitlasted · 01/04/2020 19:59

No advice but you are going through hell.

Be kind to yourself and hope you manage snippets of rest when you can Flowers

StarsThatTwinkle · 01/04/2020 19:59

Nothing useful to say except the effort and love you have put into your parents is bursting out in all your words, you have nothing to be guilty of, you have moved mountains for your parents but perhaps because you've been so engrossed in all the day to day efforts you can't see the bigger picture which I can see and I'm sure lots of other posters can see too.

You can't do more than you are already doing, you've been brilliant, and all as an only child without a sibling to help or even discuss options with Flowers

CMOTDibbler · 01/04/2020 20:01

Is there another home your mum could go to to 'convalesce' that has a bed earlier? I think, tbh, if your mum goes home you will really struggle to get her in somewhere - wheras if she is unsafe to discharge home, then you might get SS to help find somewhere - they found my mum a bed the same day last week as it was an emergency.

Make sure you take time to do something for yourself. It is all so very hard, and having to be the adult in charge is incredibly wearing

MondeoFan · 01/04/2020 20:03

Wow just read all of this. How difficult this situation is. When your dad was in the home did your mum visit him? Ask about him?
Sounds like they are sending her home now anyway

ACertainSupermarket · 01/04/2020 20:11

Oh bless you. Never a good time but especially awful in the midst of the hospital crisis.
Don't take this the wrong way, you didn't mention your own work situation? Would it be possible to have her with you with the carers, until the home is sorted? I know it's not easy and depends on lots of circumstances and relationships, but I was able to do this for my mum and I was so glad I did it.

sadmumbecauseofson · 01/04/2020 20:13

Firstly you can tell them you want her to have an OT assess,ent of her home before discharge. Then you need to ask for her to be assigned a social worker. Tell them you are not taking any responsibility for her care and that she needs a full care package in place prior to being discharged home. Ask for it to be written in her notes that you do not agree with her going home as she is unable to wash, cook, medicate etc.

You might find they suddenly have a place for your mum to go to convalesce.

Whatever happens you can ring PALS at the hospital and ask for advice on discharge procedure and what questions to ask etc.

I really hope you get the best outcome for your mum and you. Look after yourself.

Elbbob · 01/04/2020 20:15

I am so sorry for this. Glad you st least have DH to talk to.
If home is the only option then please push for 4 carer visits a day and district nurse visits to manage the insulin (carers can't do that usually). Does she have a falls alarm? Does she need any equipment at home? I'm sure the OT will think if these things but best to ask. And best to have it all in place before she goes home.

RB68 · 01/04/2020 20:48

If Mum goes home you will break - three times a day is not enough if she is injecting 5 times a day - I think you need to ask her GP surgery to get her a care coordinator (usually District Nurse Team and get them to work with social services, GP, Hospital, equipment (sounds like she might be better with a zimmer frame or trolley to give her more confidence) ) You need a proper assessment of her needs and further need to sort out LPAs so when the time comes you can manage her finances and health decisions in the way that you agree between you. If you don't sort this when sh is in hospital if you are trying to do 2.5th of the care you will never have time. We lost Mum in Nov to Vasc Dementia and Dad has terminal liver failure with no hope of a transplant due to other issues. Dealing with everything for Mum was an utter nightmare and she was bedbound and without the ability to communicate, eat, drink or anything at the end.

Please do not feel guilty about any of this it is up to you to advocate for your Mum right now and things need to be right for her to come home.

picklemewalnuts · 02/04/2020 15:42

I don't have any special knowledge or experience.

You are doing so well, fighting for her, in such very hard times.

Sometimes we have to accept less than perfect outcomes, because there is nothing better on offer. That isn't a failure, it's just realistic.

Kenworthington · 03/04/2020 18:57

Hi everyone hope you’re all ok and staying well. So I spoke to the OT at the hospital again today. I said I absolutely want prepared for her to go home and it wasn’t in best interest for my mum. So they asked me to find an interim nursing home. And I found one and it looks amazing! God only knows what it’s going to cost. And I know someone who works as a carer there. They said they don’t have a dementia unit (but the woman o knows who works there said basically almost every resident there has a form of dementia, such is the nature of being elderly in w home I guess). So now there’s a bette replan I feel a bit better. They are going to talk to mum on Monday about it. I’ve avoided calling her tbh because I’m finding It really ducking hard. She keeps asking about her mum Sad and if I was talking face to Face I’d distract her but I can’t do that on the phone. So s

OP posts:
picklemewalnuts · 03/04/2020 19:17

That sounds like a good option. And things can change really quickly, so you have to kind of... float along with it.