Care home or care at home - what to do?

[CardiffGirlInEssex]

@EmJay1 this is a difficult situation for you.
I wonder if it is worth you writing to/emailing your sister setting out exactly what your mums care requires and how much of it falls on you. Then ask her the question, “if I fall ill, and cannot do this for a period of maybe several weeks, what then?” Is she going to step in and take over? Or take responsibility for arranging emergency care and support?

You may have tried this already, or have reasons why it isn’t appropriate, but it might be worth a try. In the current situation any of us could fall ill and be required to isolate for at least two weeks, so it seems a very relevant question.

 

[Tim813]

Hi everyone,
Just thought I would give you an update. We (my sister and I) have decided to place my mum in a nursing home. She moves in just after Christmas. I'm having serious doubts about this decision. Since my last post she has fallen another 3 times (so she has had 8 falls since September - one stay in hospital for a week) and she does often get confused and has regular hallucinations. As you know, Lewy body dementia is like a roll-a-coaster. Some days she is OK and talking well and makes perfect sense and understands everything. She can walk well on these 'good' days. Other days she is completely confused, incredibly stiff and frail and physically weak. As you know the disease often comes with periods of high blood pressure and then low blood pressure which then causes her to faint and fall. These periods are unpredictable. I doubt whether we are making the correct decision about a nursing home. We have carers coming in twice a day (morning and evening) but she has never fallen when they are around so the care company feels that she is fine to be at home. This Sunday at 3:20am she popped round to the neighbours and banged on their front door because she thought her house was on fire because the smoke alarm was beeping. When the neighbour came round it was the pill dispenser that was beeping because of a low battery. I struggle with this because this shows some capacity as she was seeking help but I can see the obvious problems and distress this might cause the neighbours. She does wander out of the house (just around the street) but not everyday and looks for either myself or my sister. She tends to wander the street rather than knocking on neighbours doors. The neighbours tend to send me a text saying that they have helped mum back home.
When I arrive on good days she reminds me about appointments that she is due to go to and on good days is pretty good all round. My mum won't cook for herself anymore and we have to leave clothes out for her and we usually leave a packed lunch for lunchtime but to be honest she will eat it at any time during the day, even at 2am in the morning. She has frequent (everyday, up to 3 times a day) toileting accidents that need cleaning up. The sofas, bed and carpets are frequently cleaned. I guess writing all this sums up that perhaps she needs a nursing home but i tend to hold on to the good days.

 

[Rosettastone57]

It's the right decision. Not maybe, definitely. I think you know this deep down . All the scenarios you are describing are the tipping point for full time care. Of course the care company says she's fine, but they don't deal with her at 3.20am.

 

[lemonbalm]

Hello @Tim813 . I agree that you probably already know deep down that this is the right decision. If you read what you have written here as though someone else had written it, what advice would you give them? Many of us torture ourselves with the thought that our loved ones being at home is a better, kinder thing but in reality I doubt this is the case.

 

[Sarasa]

@Tim813, this is the right decision for your mother. There will need to be adjustments for all of you, but in the end it sounds like the only choice. There are several residents that sound like your mother in my mum's care home. The activities co-ordinator makes sure there are activities they can engage in that keep their brains active on the good days, and I hope that will be the same in your mother's care home.
I wish my in-laws would make the same decision for their mother, as it would improve her quality of life so much.

 

[anxious annie]

I am sure @Tim813 that this is the right decision for your mum and your family. If she stayed in her home the problems she faced would only get worse. Hopefully with the vaccine and tests coming to care/nursing homes you will be able to visit and continue to support her.

 

[Tim813]

Ok, I thought I would update you. We moved my mum into a nursing home last Monday. We stated that mum needed to go into a private hospital for a while to monitor her fainting (she has fainted 9 times and the doctor has prescribed her a very low dose of steroids which I have read does help). My sister and I have phoned everyday and spoken to carers to find out how she is getting on. We have seen her via online video and although a short meeting she seemed ok. However today my sister rang the home to find out how she was and the carer said that she was actually talking to her and passed the phone over to her. My mum then unleashed all her anger onto my sister and how she hates the home and that the home is full of mad people etc. She accused my sister of dumping her there etc. We both feel guilty and awful now. We are now feeling like we should have moved a carer into her own home or moved her to assisted living. Options we didn’t really explore but we felt they wouldn’t work as mum didn’t let carers care for her and she wouldn’t want to leave her own home. Please tell me this is normal and gets better.

 

[canary]

Please tell me this is normal and gets better.

Yes, its quite normal for them to save up all their anger for their relatives. Quite often they will be happy the rest of the time. I have seen this when I used to visit mum (pre-covid) and the resident would be happily chatting and laughing with one of the staff, or another resident, then as soon as their relative walks in it is like a switch being thrown. Suddenly they are furious, or sobbing their heart out - the place is terrible, everyone is horrible, they havent been fed and you have got to get them out . Then when the relative has gone the switch is thrown back and they are normal again. The fact that the carer was talking to your mum when you phoned and you hadnt had any indication that there had been problems, makes me think that the same thing had happened to your mum.

Its very, very early stages for your mum. It takes at least a couple of months for them to settle in, so I wouldnt worry too much about it at the moment. Next time, it may be completely different.

 

[Rosettastone57]

Ok, I thought I would update you. We moved my mum into a nursing home last Monday. We stated that mum needed to go into a private hospital for a while to monitor her fainting (she has fainted 9 times and the doctor has prescribed her a very low dose of steroids which I have read does help). My sister and I have phoned everyday and spoken to carers to find out how she is getting on. We have seen her via online video and although a short meeting she seemed ok. However today my sister rang the home to find out how she was and the carer said that she was actually talking to her and passed the phone over to her. My mum then unleashed all her anger onto my sister and how she hates the home and that the home is full of mad people etc. She accused my sister of dumping her there etc. We both feel guilty and awful now. We are now feeling like we should have moved a carer into her own home or moved her to assisted living. Options we didn’t really explore but we felt they wouldn’t work as mum didn’t let carers care for her and she wouldn’t want to leave her own home. Please tell me this is normal and gets better.

Yes it's normal. When my mother in law was in a care home she would tell us how awful the home was, " a living hell" ,no one spoke to her, the carers hated her. Well the home had a Facebook page and there was mother in law in one of their uploaded photos, smiling and laughing taking part in the activities. After that we just ignored the complaints.

 

[lemonbalm]

Hello @Tim813 . Oh yes, the anger and spite can all come out full blast for those closest. Lots of poisoned darts that can get through even the toughest of armour! You will get a better picture of how your mum is doing from speaking to the staff. The first few weeks can be particularly awful - but not always. As @canary suggests, give it some time. The carers will be well used to settling new residents in. Even if your mum is currently not happy, it's very unlikely she will remember once she has settled. Much harder for us to forget!

Just a thought on the fainting in case it's relevant. This can sometimes be caused by blood pressure tablets (my mum was taken off hers as she was fainting when standing and I have read other relatives have had the same problem).

 

[Sarasa]

As other have said your mother's behaviour sounds very typical, and is not necessarily an indication that she is really unhappy @Tim813. When I could visit my mother in her home I quickly learned to disappear while she was in the loo. If I tried to say goodbye I got a similar reaction to the one your sister got, even if mum had been happy, joining in the activities and chatting and joking to me before hand.