Is it time for a care home?

[Derek61]

I look after my mum, who is 83, and has had AD for 6 years now. I helped mum with dad who died of MND three years ago. I have a brother, who very rarely visits as he lives in another part of the country. I have carers coming in to help out in the morning and early evening, I visit and do lunch, and come back at 8-9 at night to settle her down for bed. I do all the many hospital visits (every week for eyes, you name it). I live on my own, and run my business from home. Over the last few months mums condition has deteriorated after frequent urinary infections, and now most days she does not recognise her own home, and wanders, usually at night. I have a door alarm on, and get calls at all hours to find her and take her back home. I've moved house to be closer to mum, but just cannot feel that I could move in and look after her full time. My business, my only source of income has suffered enormously and as my call outs increase throughout the day, I'm losing business. The doctor has at my prompting agreed to put mum on a low dose antibiotic, to help prevent further infections. I love my mum to bits, but I feel my life is going down the plug hole. I'm 52 and still hope to meet a good woman, and find some happiness in life. I think my dream is fading fast, and all I can see is me coming out of this older, ill, even more alone, and impoverished. Its a circle of depression. If I put my mum in for respite care then I fear that any memory of her home will fade even further. I can't lock her in the house. I just don't know what to do next? I'm torn between doing what is best for her, and keeping her in her own home. She'd never forgive me for putting her in full time care, she does have lucid moments.

Am I being selfish? What should I do?

 

[Witzend]

I look after my mum, who is 83, and has had AD for 6 years now. I helped mum with dad who died of MND three years ago. I have a brother, who very rarely visits as he lives in another part of the country. I have carers coming in to help out in the morning and early evening, I visit and do lunch, and come back at 8-9 at night to settle her down for bed. I do all the many hospital visits (every week for eyes, you name it). I live on my own, and run my business from home. Over the last few months mums condition has deteriorated after frequent urinary infections, and now most days she does not recognise her own home, and wanders, usually at night. I have a door alarm on, and get calls at all hours to find her and take her back home. I've moved house to be closer to mum, but just cannot feel that I could move in and look after her full time. My business, my only source of income has suffered enormously and as my call outs increase throughout the day, I'm losing business. The doctor has at my prompting agreed to put mum on a low dose antibiotic, to help prevent further infections. I love my mum to bits, but I feel my life is going down the plug hole. I'm 52 and still hope to meet a good woman, and find some happiness in life. I think my dream is fading fast, and all I can see is me coming out of this older, ill, even more alone, and impoverished. Its a circle of depression. If I put my mum in for respite care then I fear that any memory of her home will fade even further. I can't lock her in the house. I just don't know what to do next? I'm torn between doing what is best for her, and keeping her in her own home. She'd never forgive me for putting her in full time care, she does have lucid moments.

Am I being selfish? What should I do?

Hello, Derek. No, you are NOT being selfish. Everyone has their tipping point and it sounds as if you've reached yours. It also sounds as if your mum is at the stage where she now needs 24/7 care and supervision, and unless you devote your entire life to her care (because that is what it takes) that means a care home. You are entitled to a life, too, and your mum in her former, pre-dementia self would probably agree 100%.

Yes, she may well blame you at first for putting her in a CH, and maybe be angry with you - many of us here have gone through this, suffered abuse and all sorts of horrible accusations, but eventually these do tend to pass - they settle down and often forget all about their previous home - frequently regressing in their minds to some long-ago home they maybe left many decades before.

You will probably feel very bad and guilty if you go ahead and do it - I don't think I know anyone who hasn't - but at the same time you may well feel colossal relief that the burden is finally taken from your shoulders. It's odd that these two emotions can be felt together but I certainly felt them (twice now) and I'm sure many others here will say the same.

All the best and good luck.

 

[leedsfan]

Hello Derek,

Just so sad reading your post. I have just spent a few minutes hovering over my lap top wondering what on earth to say to you. There is such a depth of feeling and despair in your post.

I too look after my Dad, he lives alone and does wander out, despite the alarms and I do get frequent and increasing night time telephone calls from him. But, unlike you I do not have to work.

I really feel you should be getting more help with your Mum if she wants and you want her to remain in her own home. My Dad has carers 4 times a day, which I am truly grateful for, but sometimes I feel I just can't cope, so God knows how you manage.

What does come across is that you obviously love and care very much for your Mum, and believe me she is very lucky to have you.

Try and get some more help, the strain and the worry will make you ill.

Hope someone comes up with some more ideas for you. The wonderful TPers have never let me down.

Take Care and keep us posted.

Jane

 

[bad daughter]

I think it probably is

Derek, sorry to hear what you are going through. Mum went into a CH in January and we are still all wondering if it was the right thing to do, but only because she will very lucidly tell us why she shouldn't be there.

I am coming to terms with the fact that she has no insight into her condition and therefore her "views" cannot be acted upon. The CH is fantastic and she is a lot less agitated because all the day to day stuff that was worrying and confusing her is taken care of.

It's really difficult to know how much of the "real Mum" is still there, and it will differ on different days. On my last visit she had me confused with my sister for the whole time, which confirmed to me that she is in the right place. It's perverse, but in some ways the "worse" she gets the easier it is, just because those sort of worries about whether you've done the right thing get easier to answer.

With your Mum's wandering and not knowing her home etc, it sounds like you should be looking at a CH now. I understand your desire to preserve your Mum's memory of her home, but wouldn't it be better at this stage that she was happy and safe?

And you must look after yourself. Becoming ill and unable to work is the last thing your Mum would want for you, and it will make you less able to care for her as well.

I do hope you find the right solution, you will get lots of help from others on here

 

[Witzend]

I really feel you should be getting more help with your Mum if she wants and you want her to remain in her own home. My Dad has carers 4 times a day, which I am truly grateful for, but sometimes I feel I just can't cope, so God knows how you manage.

The thing is, carers can be a great help, but when someone gets to the stage where you honestly feel they're not safe to be left for even half an hour, what do you do? What about being left alone all night?

With both my mother and my FIL, we had certainly reached that stage, and probably had gone quite a way past it, because the CH decision was so heartsearchingly momentous and so we had been putting it off. FIl was actually living with us, but quite apart from other dementia factors he had certainly got to the stage where I didn't feel it at all safe to leave him even to nip to the shops for half an hour. As for OH and I ever going out for a couple of hours in the evening, it was out of the question.

 

[Delphie]

I look after my mum, who is 83, and has had AD for 6 years now. I helped mum with dad who died of MND three years ago. I have a brother, who very rarely visits as he lives in another part of the country. I have carers coming in to help out in the morning and early evening, I visit and do lunch, and come back at 8-9 at night to settle her down for bed. I do all the many hospital visits (every week for eyes, you name it). I live on my own, and run my business from home. Over the last few months mums condition has deteriorated after frequent urinary infections, and now most days she does not recognise her own home, and wanders, usually at night. I have a door alarm on, and get calls at all hours to find her and take her back home. I've moved house to be closer to mum, but just cannot feel that I could move in and look after her full time. My business, my only source of income has suffered enormously and as my call outs increase throughout the day, I'm losing business. The doctor has at my prompting agreed to put mum on a low dose antibiotic, to help prevent further infections. I love my mum to bits, but I feel my life is going down the plug hole. I'm 52 and still hope to meet a good woman, and find some happiness in life. I think my dream is fading fast, and all I can see is me coming out of this older, ill, even more alone, and impoverished. Its a circle of depression. If I put my mum in for respite care then I fear that any memory of her home will fade even further. I can't lock her in the house. I just don't know what to do next? I'm torn between doing what is best for her, and keeping her in her own home. She'd never forgive me for putting her in full time care, she does have lucid moments.

Am I being selfish? What should I do?

I can identify with a lot a what you're saying. Trying to run my business and to look after my mum was stretching me too far, and even though I have a lovely husband and sons our family life was severely disrupted by how involved I had to become with my mum just to keep her safe and functioning. At least your mum accepts carers. Mine never did.

So no, I don't think you're being selfish to think about respite or even residential care for your mum. It's either that or increase the amount of time that carers spend with her, to allow you to have something of a life. But I do think that there comes a point where unless someone is around all the time, there will be risks that you can't avoid or eliminate, and even the worry alone will have a huge impact on you, day in and day out.

Residential care doesn't have to be some horrible last resort. I thought it was and dreaded the prospect. In fact I didn't think I'd even manage to get my mum into a care home. She is quite ill but has lucid moments too, like your mum. But I tricked her into thinking we were going to have a holiday and she's been in a home for several months now. She has no memory of how she got there and doesn't really understand where she is but she is massively better off there than at home. She has company and she's clean and safe and has fresh food every day, and her times of confusion,which used to cause her a lot of stress are expertly handled by the staff. She is happier than she's been in years. And I'm getting my life and health back.

To be honest, even if my mum wasn't happier in residential care, the decision to place her there would've been the right one as at home she wasn't all that happy either, and I can't see one good reason why having both of us miserable and stressed would've been a sensible option.

So don't beat yourself up if you've reached a point where you feel you can't go on providing this level of care. Your life is important too and residential care can be absolutely the right thing, even if the person needing the care wouldn't or doesn't agree.

 

[kingmidas1962]

Hello Derek,

I just wanted to say very simply that NO you are not being selfish. I dont think its fair for a child to have to sacrifice their life for a parent - I say that AS a parent, and I NEVER want my daughter to be in the position actually, that I am at the moment - my dad is in care and my mum is recovering from carer breakdown so I am trying to 'distance care' them both and its pretty impossible.

Carer breakdown is very real, as I'm sure you must realise - but it is potentially avoidable. There are some GREAT care homes - as already said, it needn't be the horrid depressing prospect you may possibly imagine. Indeed some sufferers thrive for quite some time once in residential care.

You have already sacrificed a great deal of your time, it seems - you cared for your dad and now mum. This is YOUR time - you deserve it. I'm sure if your mum could express her wishes she would say the same.

...oh, and good luck with Miss Right - you sound like such a lovely caring bloke someone is going to be very lucky

 

[leedsfan]

Me again Derek, just been reading the other replies to your post. This type of debate always throws up the own home with extra help versus a Care Home doesn't it? What it does show, for me anyway, is that it is always an individual situation, no one size fits all here.

I do understand 'Witzend's comment about the safety of Dementia sufferers that wander, but, in my own personal situation with my Dad, and having tried the CH solution once, I know I am doing the right thing - at the moment. Next week, next month, who knows the decision may well be taken out of our hands. My Dad went into a lovely CH for a month's respite last year, and I'm sorry to say he hated every minute of it, there were lots of people further down the dementia road then Dad and living with them completely distressed him, and he wasn't even on the dementia side of the home, but the residential as he has days when he is quite lucid.

Hope you manage to find the best solution for your Mum and of course for you.

Jane

 

[ellejay]

Hi Derek, It does sound like it's time. You sound at your limit & you going under will not help anyone.

My mum didn't wander, but she was always scared & confused & would spend pretty much the whole time phoning. At night sometimes I'd bury the phone in the laundry basket so I couldn't hear it, but that just meant she'd phone my niece & wake her household up. My niece & I knew mum was phoning the other one if we got 30 mins between calls .

Mum is in a CH now. She moans at me every time I visit & has a list of complaints.

The carers say she's fine when I'm not there & I have seen photo's of mum joining in with activities. She is a lot better physically than she was before (she's 91) & when I leave after visits I know she's going to be looked after.

Bottom line is, if you disappear under all this, your mum will still be in a CH, but you won't be visiting.

Be kind to yourself

Lin x

 

[hopeful56]

Hi Derek

No, you are most certainly not being at all selfish. You are sensibly realising that your mum needs a level of care that you are aren't able to provide.

How about telling her you have a business trip/training course/conference to attend in a few weeks and it would be an ideal time for her to have a little break too, in a nice place you have found for her. Many care homes offer respite care beds and this would be an ideal stepping stone to full time care. There are some TPers whose loved ones have never left the respite care they went into for a "couple of weeks"!

Perhaps you could visit your chosen CH together a few times for a cup of tea or an activity so she is at least familiar with it.

I think it is certainly worth a try and it would give you an opportunity to recharge your batteries and have some quiet thinking time to decide the future.

JJ

 

[Witzend]

Me again Derek, just been reading the other replies to your post. This type of debate always throws up the own home with extra help versus a Care Home doesn't it? What it does show, for me anyway, is that it is always an individual situation, no one size fits all here.

So true, everybody's circs. are different, and each dementia sufferer ditto.

 

[Gelson]

In same situation ...

I look after my mum, who is 83, and has had AD for 6 years now. I helped mum with dad who died of MND three years ago. I have a brother, who very rarely visits as he lives in another part of the country. I have carers coming in to help out in the morning and early evening, I visit and do lunch, and come back at 8-9 at night to settle her down for bed. I do all the many hospital visits (every week for eyes, you name it). I live on my own, and run my business from home. Over the last few months mums condition has deteriorated after frequent urinary infections, and now most days she does not recognise her own home, and wanders, usually at night. I have a door alarm on, and get calls at all hours to find her and take her back home. I've moved house to be closer to mum, but just cannot feel that I could move in and look after her full time. My business, my only source of income has suffered enormously and as my call outs increase throughout the day, I'm losing business. The doctor has at my prompting agreed to put mum on a low dose antibiotic, to help prevent further infections. I love my mum to bits, but I feel my life is going down the plug hole. I'm 52 and still hope to meet a good woman, and find some happiness in life. I think my dream is fading fast, and all I can see is me coming out of this older, ill, even more alone, and impoverished. Its a circle of depression. If I put my mum in for respite care then I fear that any memory of her home will fade even further. I can't lock her in the house. I just don't know what to do next? I'm torn between doing what is best for her, and keeping her in her own home. She'd never forgive me for putting her in full time care, she does have lucid moments.

Am I being selfish? What should I do?

Gave up my job in France.. Left children there in uni...
Had to come to UK to look after my father who now needs 24\7
Don't know how long I can do this for... Can't work, so making ends meet is hard...
I don't know if I should feel guilty about putting father in CH ..hats off to those who spend years of there lives looking after parents.... It's just been six months.. Financially and emotionally I think I have maybe another 6 months in me....
Then will sell fathers house to pay for his CH....
I can't do more.. Just can't .....

 

[loulou64]

Hi Derek - I'm new on here having only joined yesterday, but I thought I'd written your post as it mirrors my life so much. I too care for my 83 year old mum, have one brother who lives away so has limited input. Mum too has had recurring urine infections and been on antibiotics the last 3 mths and has increased confusion since being on them. I gave up my job to care for my mum (who I live with) thinking it was the right thing to do at the time but it's so hard on your own struggling to get by on the pitiful carers allowance and income support. I had a reasonably paid job, lots of friends and an active social life. I've now lost all my friends, separated from my husband and feel so alone and I too feel at the age of 49 the future holds nothing for me. I have no chance of meeting anyone else as I can't have a social life - it's not as if I can get a babysitter for mum when I want a night out - the only time I have to myself is two half days a week when mum goes to day care and that time I spend catching up on all the domestic chores I've been unable to do the rest of the week. And yet I feel so selfish and guilty just saying these things. I love my mum to bits and I know she wouldn't last long if I put her in a home - I can't even bear the thought of her going into respite care so haven't had a break in 3 yrs so I understand exactly how you feel.

I didn't realise 3 yrs ago how hard it would be on my own, but my mum's condition back then wasn't as bad as it is now and I did still have a somewhat normal life then.

Some days I feel as if I'm stuck between the devil and the deep blue sea - I gave up my job, my marriage and my home to care for my mum - if my mum goes into care I will lose my home, have no job, no life, no money - if I carry on caring for my mum I have no job, no life, no money and risk losing my sanity.... But other days I just have to look at my mum laughing at something stupid either I've said or she's said and those feelings go away - for a few hours at least.

It's a horrible decision to have to make and my heart's with you. Whichever path you choose you are sure to have some regrets but you are not selfish, you're a son who cares for his mum and the only reason why it's such a difficult choice is because you do care x

 

[JackyS]

Hello Derek, how awful for you.

I was in a similar situation last year and someone gave me some really good advice (which turned out to be totally true). I know every dementia journey is different, so it may not work for you butI just wanted to share this with you in the hope that it helps.

A friend of a friend who'd been through it all told me that, if I moved Mum into a Home, I'd be able to enjoy quality time with her for longer - without worrying about what she'd eaten (if she'd eaten), what she was wearing and when it was last washed, when she's last had a bath, if she really understood money any more, if she was safe, when she would next go out in the middle of the night and, if she did, whether a good or bad person would find her, if she'd taken her meds, whether my marriage would survive the strain of it all, if I'd get called out of work today etc etc etc

Mum had a fall in the street and we used that as a reason for her to move into a "convalescent" home for a few weeks while she recovered. It was an initial tough 3-4 weeks as she settled in (and I spent most waking hours wondering if it was actually too soon for her to move into full time care and was I being selfish), but now she loves it - and so do I: we spend most of our time together laughing and going out together at weekends for lunch or coffee or shopping etc etc

I cherish these times and I know they may not last for long - but I know that if I'd try to keep her at home for longer, I would be miserable, harrassed and probably not v nice to know - and she would be distressed, anxious and probably not at all well. So we've both won and I've got some more lovely memories to add to my collection.

Good luck and I'm sure you will make your decision with love x