Help - stressed and feeling guilty

[Elliehan]

My mum has Lewy body dementia and has deteriorated over last few months. She’s still living alone at home but someone goes in every day to do her medication and prepare her tea. I live 1.5 away but go 3/4 times a week inc staying over one night. I also ring about 4 times a day. She can still look after herself but I do all the shopping, finances, washing etc and manage the house. She used to love reading the paper and doing crosswords but can’t concentrate to do this anymore. Finds it hard to concentrate on TV and often gets mixed up with TV remote and phone. Regularly leaves phone off the hook so I have to r8mg a neighbour to go and put it back. Has lots of hallucinations of people in the house who she talks to. Increasing difficulty with word finding so often I can’t work out what she’s trying to say. Sometimes forgets to eat which is why I’ve arranged for carers to come when I’m not there which she’s v grumpy about. The situation has taken over my life. Even when I’m not there I’m thinking about it. She hates being on her own and constantly tells me. Hates it when I leave. Says she’ll never go into a care home and I worry that the transition will just make her dementia worse. She’d prefer to come and live with us but I just can’t bear the thought of that which makes me feel guilty. She stayed for 8 weeks during lockdown and drove us all mad. Hates being alone even when there’s other people in the house. Follows me around. Won’t go to bed until you go. Won’t sit in another room to watch TV but complains about the programmes we watch. Just wants me to talk to her all the time which I find exhausting coupled with all the usual repetition and losing things. I also have other caring responsibilities to 2 teenagers who lost their mum recently. I’ve tried to support my mum for 10 years since my dad died -taking her away and out for the day but she always wants more and 8m getting to the end of my tether as is my husband. Sorry for the long ramble but how do people decide when someone needs to go into care and also withstand the pressure to bring them into your home without feeling awful. I love my mum but find her very wearing. Thanks

 

[Bunty2410]

I’m considering moving my mother in with me at the moment, as a transition before she requires more input. My son has suggested to me that if I do this I should see a councillor. To cope with the shenanigans that could ensue.
Talking to someone not close to your situation Can give us clarity and help us see the wood for the trees. Just a thought

 

[Grable]

Elliehan, I can empathise with you whole-heartedly. I lived 200 miles from my mum - a 4-hour drive when there was little traffic. When she started with dementia, I wanted her to come and live with me, but realised that it would be impractical: I work during the day, so either I would have to stop working or my husband, who's retired, would end up caring for her; we have steep stairs to our spare room and only an upstairs bathroom, which wouldn't cope with; all her friends were in her own village; my brother lived 8 miles away from her - he didn't visit often, but would never have visited if he'd needed to drive 4 hours to do so; she wouldn't know her way around the house or the area. I realised, having made this list, that wanting her to come to stay with me was me being selfish; it certainly wasn't the best thing for her.
I considered trying to get 24-hour care for her - a companion who would make sure she was being fed and would check that she went to bed (something she often forgot to do). My problem with that was that I didn't know how to find somebody that I could trust with her. Sometimes I got irritated with her (as daughters do with mothers), but I would never hurt her - what about a stranger? And what if they couldn't cope and suddenly upped and left?
We tried to manage with carers going in 3 times a day - and, like you, we used to have to get the neighbour to go round and sort out the phone for us.
In the end, we found the best care home we could for her and that's where she ended her life. She wasn't happy there, but she was looked after. We were in the lucky position of not having to sell the house, so I was able to stay there when I visited, which I did at least once a month, staying for three or four days and visiting Mum at least twice a day and, when she was well enough, taking her out - first in the car and, as she deteriorated, in a wheelchair.
Mum died in 2017. In my heart, I still feel guilty that I couldn't care for her myself, but my head tells me I did the very best I could have done for her.
Sorry this is all about me - but I hope it shows that you're not on your own with these feelings. You have to work out what's the best for everybody concerned - and, yes, that does include you - and then make the most of it!
Good luck!!

 

[RosieLee]

Hello Elliehan, I completely get how you are feeling, I have recently moved in with my father who has Alzheimer's and don't know how I am going to carry on living like this. The guilt that goes with those feelings is awful and I think the suggestion above of counselling sounds like a good idea and something I will be looking into for myself. I too am wondering when the right time is to put Dad into a home which he will hate, but as Grable said, we have to work out what's best for everyone, including us. This forum is a good place to hear of other people's experiences and hopefully that will be helpful for you. I have only recently joined, I feel very low and it is comforting to realise there are many people in the same boat and we just have to do the best we can, there is no perfect answer.

 

[DaveCr1968]

Hi all

Just gone through a similar think with my dad after mum passed away suddenly. I'm 180 miles away and was caring for him full-time for nearly a month while mum was in hospital and after she died. After mum died, it became very clear to me (personal and professional reasons) that I could not care for him in the medium/long term, and because of night time activities and occasional falls, it was not safe for him to be on his own.

The only real option was residential care and the guilt was horrendous. After a battle with SS (they expected me to stay indefinitely), he is now placed in a good home and seems to be setting in with the social interaction and stimulation he needs. If you take emotion out, it is a very easy, logical decision. However, taking the emotion out is the hard bit, but even mum and dad's friends said he needs residential care.

Regards and good luck.

Dave

 

[canary]

@Elliehan - I could have written your post about my mum just before she moved into a care home. You have completely described what it is like and how someone with dementia behaves. Mum wanted to come and live with me, but a weekend staying with me was enough to show me that it could never work.

Mum too was lonely and afraid of being on her own, but fought hard against going into a care home and would not even let carers over her doorstep, so eventually she had no choice. I was surprised that mum settled (it took a couple of months) and that she actually thrived there. She made friends there, joined in the activities and loved always having people around to talk to, even in the middle of the night. It was not something that I was expecting, as I thought she would hate it so much. Quite a few other people on here can testify to the same thing happening to their relative too. So, you see, your mum might be the same and end up happy in a care home. Even if she doesnt, she will be looked after and kept safe and sometimes, that is the best you can get wherever they live.

 

[DILhelp]

I’m considering moving my mother in with me at the moment, as a transition before she requires more input. My son has suggested to me that if I do this I should see a councillor. To cope with the shenanigans that could ensue.
Talking to someone not close to your situation Can give us clarity and help us see the wood for the trees. Just a thought

I'm starting therapy soon as I have really deteriorated mentally. I feel so low dealing with my MIL and I have lived with her since 5yrs ago. It is very tough. My paid work has suffered and along with my physical health. I'm always tearful too and feel I'm becoming a recluse. I don't have any desire to enjoy my life and don't like to socialize. sorry thought I would be realistic it's very hardwork. Feel I have lost my life