Time for Care Home?

[little shettie]

We are in a real quandary over mum. She lives quite far from me and since my dad died 6 months ago, her dementia has deteriorated along with the depression she has over losing him. It would have been their 70th wedding anniversary last Wednesday. Mums weight has plummeted, she doesn't eat much, mainly just a slice of toast she makes herself. She has 4 care visits a day. mainly to administer meds and check on her as she won't let them do a thing. When I go over which is 3-4 times a week I have a meal with her and she wolfs it down but apart from that she eats little. This has resulted in her being unsteady on her feet and she has had several falls onto the back of her head. She won't wear a pendant, got her one it went missing(!), the last care visit is at 6.30pm then she is alone all night until the first visit of the day about 10am. Seeveral times the carers have been unable to gain access to the house as she has locked the door from the inside and they have been unable to raise her even by phoning. Its all such a worry and apart from the terrible rages, mainly aimed at me for taking her debit card etc etc, she has started to have little accidents in the toilet and they are becoming more frequent. My initial wish was for her to move close to me and continue living independently as I thought with my support and my son who also lives close, we could manage her much better and get her back to some normality. But, I see the increasing signs of dementia getting worse and feel maybe I'm being delusional about it. When dad was alive he desperately wanted to move but mum would not hear of it, she has never liked change and has always said if we put her in a care home, she would just die. My son and hubby tell me she needs the support and care of a home but I feel so awful about doing so, feel I would be letting her down. I also feel we'd have to drag her kicking and screaming. I know they are right but I'm having so many sleepless night over it all I can't cope. When mum is bad when I'm with her and downright nasty I leave, telling myself, that's it, she's going into a home. Then next time I go, she is up and dressed, standing at the sink washing up and she seems so 'normal' that I think to put her in a home would kill off the last remaining 'normal' part of her. By the way, I have 3 brothers, one of whom also visits mum as often as he can and helps out, but the other 2 live a long distance and can only manage occasional visits. They both feel mum should not go into care but as they do not care for her daily, they don't understand what the rest of us are going through. Please any advice would be so welcome as I'm at the end of my tether.

 

[janma221]

It is difficult to give much advice as I am in the same sort of quandary. I live about 2 hours drive from my mother and I have started full time work but she wanders at all hours and the police have quite understandably have enough of bringing her back particularly as a couple of situations have been dangerous. She had 3 carers a day but put the chain on the door to stop them coming in now has 1 in the evening and will let the male carers in but not the females! Her social worker, cpn and the lovely lady from the Alzheimer's society who were all keen to keep her at home as long as possible have agreed (after being blasted by the police who asked exactly what criteria did they need) that she needs to be protected for her own sake. Looking for a good home near us to we can visit her more often. Sorry such a long reply but I do understand how you feel and last time visited the deterioration was worse and she kept giving us the evil eye. Think I would have to carry her kicking and screaming too so hope things work out for you. Keep posting and let us know how you get on.
Jan xxxx

 

[rajahh]

Little Shettie Read the last few words of your post, and keep reading them.

The time is here when your health has to be put first, not your mothers/

The two brothers who live at a distance should not be listened to unless they are prepared to take over.

This all sounds harsh and I am saying these words while I am agonising over placing my own husband into a nursing home too!!!

I keep thinking oh another week or so won't kill me, , but in the end I know it may just do that.

Myhusband is on a waiting list and I dread and yet long for the phone call.

It is one of the most distressing things we have to do is to place our loved one into care, but many on here will testify to the fact that life improves for both carer and caree when this happens.

I have actually written the words kicking and screaming into a living will document for my children about me.

I have clearly stated that if I get dementia and get to the point where I do not have capacity then I have to be placed in a care home even if I am taken kicking and screaming.

 

[FifiMo]

Hiya Sheltie,

Why not consider doing a trial run? Find a home local to you and book her in for a couple of weeks holiday. Then you can turn up every day and spend time together. You never know but you might find she takes to it quite well. I would also refer to it as a hotel and not a home. You could tell the hotel that it is for respite with the option of it becoming permanent and as long as your mum has settled ok then just tell her she has another week of her holiday left.

Fiona

 

[WyCassell]

Hello Little Shettie-

I know this step well, I went all the way to the other side of the country to get my Mother, so she could be closer to me and I could look after her. Nothing is normal any longer my Mother is changing into someone I don't know. She has her good days where I look and listen and she is herself, then she goes back behind the dementia and becomes irritated, confused, and mean. I have had Mother with me since June 25th, and a month of that was spent in the hospital and rehab. My Mother isn't getting any better. And I do feel guilty about putting her into a CH, I meet people all of the time who say I am not right to do so, but I need to protect my family. My brothers are to far away to help and really won't help.


My initial wish was for her to move close to me and continue living independently as I thought with my support and my son who also lives close, we could manage her much better and get her back to some normality.

 

[Fed Up]

This is a problem written about over and over again. I do understand it really but it is really simple. Living alone with Dementia is almost impossible. Four care visits so thats about 25 minutes each and the rest of the time alone. No pendant ok might be heavy but they do bracelets as well and its not called Lifeline for nothing.Its hard to care with help but a difficult situation like yours must be clearly explained to your kinfolk.
If your brothers offer to help beware how long will that last do you suppose?
Think carefully and of yourself as well. I do think a care home might be best for mum as she'll eat regularly etc and have company as well. Just think before committing to a life of washing, cooking, cleaning etc and thats without personal care and visits to hospitals etc and if your lucky and get a day centre place you might get a few hours off once a week.
Caring is very hard work for a lot of us, its physically demanding and being on call 24/7 is very stressful. It is not something I would ever agree to do again. It costs emotionally and affects other members of your family. If your married and have children how will your husband and children's lives be affected? Please also remember she won't get better their is no normality to return too the bad days may increase and this is not something that will change in a few months it may be years that you will be caring.

 

[little shettie]

Thank you all for taking the time to respond. I guess I do know the answer but just need the reassurance that I'm doing the right thing for mum. I also know I'm not alone and so many people are going through the same dilemma. I hope you all find your peace soon, love to you all xxx

 

[jenniallen79]

Feeling your pain!

Reading your post made me well up as it brought back the feelings I had when we had to put my mum into a nursing home. The first time was an emergency admission on Xmas eve when my dad had to be rushed to hospital. That was the worst Xmas ever! My sister and I have both got young children so it would have been impossible to look after mum ourselves. Your story really reminded me of my own when you wrote about how your mum said ' I'd rather die than be put in a care home'. My mum used to say a very similar thing, and you have to think to yourself that if your mum knew how much heartache and worry her being at home on her own was causing you, or if she had known she was going to get dementia then she would never have said it. It sounds like it would be the best thing for her. It is such a worry when they are at home. My mum has deteriorated rapidly over the last few years and barely recognises us anymore. She too went through that angry phase though and its horrible. You never expect to get reactions like that from your own mum do you? Mum is very settled in the home now though and it's a huge weight off our mind to know that she is safe and can't escape or hurt herself! Do you have any support nearby? Mum used to visit the day hospital once a week and that helped her to focus on something else and she was safe! I hope that you get it sorted, and just know that if you do decide to,put her in a home, then the guilt does subside, honestly! Jenni xxxx

 

[Linbrusco]

Little Shettie, I am not at that stage yet with Mum, but as for the long distance brothers I would email them a day/a week in the life of you as a Carer.
Note down every little detail about your Mum, her day, your day, even if it is awful and too much information.

Then... they might just get it. (((HUGS)))

 

[simpknt]

I can cope with Janet most of the time, but a bad night when she keeps waking me up and then a day of driving me to despair pushes me towards the CH option. We had a day like that yesterday, resulting in me calling the Mental Health Team and saying I wanted the next available two-week respite place at a local CH. Now in the early hours, with Janet sleeping peacefully, I know I can't put her in a CH yet. Her carer (5 hours a day, 4 days a week) has offered to stay with Janet a couple of nights a week so that I get some uninterrupted sleep. I rang the CPN late Friday afternoon because Janet was out of control and he said he'd come on Monday for a chat. Our Mental Health Team really are quite extraordinary and incredibly supportive. Without them Janet would have been in a CH months ago. They've declared many times that their aim is to keep Janet in the community as long as possible, as is mine. We're self funding so there is no monetary gain for them in keeping Janet independent.

David

 

[Witzend]

Little Shettie, I am not at that stage yet with Mum, but as for the long distance brothers I would email them a day/a week in the life of you as a Carer.
Note down every little detail about your Mum, her day, your day, even if it is awful and too much information.

Then... they might just get it. (((HUGS)))

To be honest I would go a lot further. I would tell them bluntly that although I know they mean well, they cannot possibly imagine what it's like trying to cope. And that unless they are prepared to take over - completely - for at least a couple of weeks, so that they DO have a clue, then they are not entitled to a say in the matter.

 

[Forestridge]

I agree with Witzend. Unless your Brothers come and live it they can't understand. They can be told what you do and understand on an intellectual level but can't on an emotional level. It's not only the daily living challenges , it is watching someone you love slip away from you gradually in front of your eyes. I do have experience of long distance brothers. Mine hasn't seen her for 4 years plus but thinks you can get a handle on Dememtia by telephone. I am apparently too close to the situation. According to the CH staff who have hear her on the phone to him,in his defence she is very convincing. A few months ago I went over and was upset to find her opening the door having clearly wet herself (got wet in the rain she said) and was sitt g looking at me with a blank expression, suspect she had a TIA. That same afternoon he spoke to her and said she sounded fine .

When you are in the situation it is so hard to see a way out. When I was at my wits end and my health in tatters a few weeks ago, I had two friends say pretty much the same to me. The said whatever plan is put in place that it must allow me to have my life back because this was no way to live and I had to be able to get my health back as they could see how I'll it was making me. Sometimes it takes outsiders to help you understand how bad the situation is.

My Mum went through a bad patch. She wasn't taking her Meds properly, not drinking, climbing ladders with very poor mobility and didn't call for help for over 6.5hours when she felt. There was a fair bit more than that but those are the things I told who manages a community health team (younger client group but does include people with brain injuries plus she has had experience of dementia in the past). She said if she was presented with that information she would be asking for further assessment as felt the client would be starting to become a risk to themselves and would be borderline as to whether some intervention was necessary. As he pointed out she doesn't know Mum but was just she would do a Team manager presented with those facts. My Brother's reaction when I relayed this to him was 'don't get hysterical about it'.

It's an incredibly difficult decision to make but sometimes it needs making. If your Brothers are not prepared to support a decision you make that it is time for residential care then they need to come up with a solution effectively removing you from her care so you can recover. Also if your DH and son are saying they think it is time and they can see the effect it's having on you then I would listen to them. Sorry you're go g through this.

 

[Witzend]

To be honest I would go a lot further. I would tell them bluntly that although I know they mean well, they cannot possibly imagine what it's like trying to cope. And that unless they are prepared to take over - completely - for at least a couple of weeks, so that they DO have a clue, then they are not entitled to a say in the matter.

Just to add, ages ago when we finally decided that FIL had to go into a CH (he had been living with us and I simply couldn't cope any more) I had a LOAD of grief from his younger sister, OH's aunt. I was selfish and heartless, you name it - she expected me to give up my entire life to care for him, and yet she had never looked after him even for an hour.

She insisted that we find a CH near to her , and luckily she lived in Bog nor, where there are many. And it happened that by far the best we found - the only one that said they could cope without locking him in - he would have gone mad - was just across the road from her flat. She was satisfied - until he started calling in every afternoon, pacing up endlessly up and down, stopping her watching Countdown etc. and asking the same question every half minute.

It was then that she started phoning me, saying, 'He's driving me mad! I can't cope!' Etc. And I said well now perhaps you realise what it was like for me, ALL day, every day. She did eventually admit she'd been wrong, but it took that experience for her to be at all aware of the realities.

 

[simpknt]

'Just Walk A Mile In My Shoes' came to mind when I read your post, Witzend. A brilliant story and must give hope to all hard-pressed carers who have sideline snipers in their lives.

David

 

[Pendragon]

Care Home

I have read this thread with a heavy heart. Having cared for mum for 6 years, some good and some bad, I felt that the time had come for mum to go into care. I have found a wonderful place, a Methodist Care Home, and thought we would have to wait for quite a while. But they phoned to say a room is available. The problem is that some days mum seems quite bright, even manages to cook a ready meal. But others are bad. She sleeps most of the time, is slightly incontinent and her anxiety levels are mounting again. I had a weekend break recently and because she couldnt get hold of me she phoned 999 and ended up in hospital. Phone calls started again doesnt know if that is her house. She is very frail on her feet and has to go upstairs to bed. She is 92 and lives on her own. Carers go in for three hours a day and I go in three times a week. I do everything for her, shopping, washing, cleaning, gardening, finances. She had no idea and still thinks she does it all herself. It is just when I walk into the dementia unit at the care home I dont see my mum like that. She puts on a bit of makeup every day, but then doesnt change her underwear unless prompted by the carers. I am sure she will be settle eventually, but is adamant that she wont go in. The day set is next Bank Holiday Monday. It makes me feel sick and I cant sleep. A child shouldnt have to do this to their parent.

 

[starryuk]

I visited my mum today (VD) in her CH.

S, aged 99 very limited vision, no dementia, had a chat to me. He loves being in the CH. When his wife died, he realised that he couldn't cope on his own.

He said, "the trouble is, our brains tell us we can do things we are just not capable of. End of. We need support. Here there's lots of activities, company, friendly people. I can do what I want, if I want something, I just have to ask."

If only our dementia sufferers could see things that way.

...Just my thought for the day and to pass on S's view that life in a CH can be good. Maybe it won't be so bad for your mum.