Don't know whether to take my mum out of care home, back home with a carer?

[Anotherdamnlol]

My mum has been ill for a couple of years with anxiety and depression, confusion etc In January she deteriorated put her in a care home for respite care, came out for one night, taken to hospital with UTI, 4 weeks later went in a care home, 3 weeks later back into hospital cos not eating, drinking or taking meds. 3 weeks in hospital diagnosed with mixed dementia, discharged into a different care home has made amazing progress, drugs Trazodone and Memantine have really helped her. 6 months on and she's a different person, still terrible memory but much better spirits. She is backing doing the crossword everyday, watching TV, reading paper, taking part in activiites and I take her out of care home at least once a week. Had a couple of successful days out in London etc.

She is still mobile, conversant, and likes going out, anywhere, as much as possible which is not possible in the care home. She wants to leave the care home and return to her flat. I have told her this is only possible if she has a live in carer.

I am in such a dilemma. The best thing for me is if she stays in the care home, 24 hour care, everything looked after etc, and if she deteriorates she is in the right place. And then I have quality visits with her, massaging her feet, watching TV, doing the crossword together etc.
But I think the best thing for her is to be back home with a carer. She can then do normal things with supervision: shopping, cooking, laundry as well as have 121 care, the food she likes, and a carer who can take her out everyday and to her activities and clubs she used to belong to.
This will be a lot of hassle for me: firstly I have let out her flat never anticipating she would get better, so either got to get tenants to leave voluntarily with a pay off or rent her a different flat if they refuse to leave. Then hassle of furnishing her flat (got rid of a lot of her furniture), then hassle of recruiting carers, managing the carers, etc. And having gone through all those hoops what if she is unhappy at home with a carer? (she's always moaning about something) and misses the staff and activities in the home? and what if she then deteriorates and I have to put her back in a home?

Do I let her make the most of her independence while she can (she's 77) or keep her in the care home? She is self-funding and I think the cost will be similar.

 

[Jessbow]

Compromise Leave her where she is, and organise someone every other day perhaps , to take her out

 

[canary]

No one ever wants to be in a care home (unless like my mum they dont realise it is a CH!) and given the option they always want to go home.
You say that she could then do "normal" things like shopping, laundry, cooking etc, but actually - would she really do this? Mum insisted that she was doing these things, but in reality she had become unable to do them. Now that she is in a CH she is so much better, she is calmer and much less agitated and suspicious. My feeling is that she is like this precisely because she is in a care home and she no longer has to struggle to cope. The routine and familiarity is comforting to her and she doent have to worry about the domestic side anymore.
Another point is that lots of people with dementia want to go home - but actually they mean that they want to go back to a place where they dont feel confused.

I think you know yourself that it would be extremely hard on you if she returned to her flat and TBH Im not convinced it would be better for her.

 

[Amy in the US]

Welcome to TP! I'm sorry to hear about your mum and your dilemma. I hope you find good advice and support on here, as I have done after joining recently myself.

I am sure you will consider all the options and make a good decision, both for your mum, and for yourself. My mum is now in a care home after a hospital stay earlier this year, which is when I found out she had dementia. Looking back, of course this has been going on for some time.

I want to caution you about being too optimistic about how well your mum would cope at her flat. You are correct that IF you manage to settle her there with a carer, you then have to manage the situation with the carer (what if the carer goes on holiday, is ill, quits) as well as the practical problems with the tenant, furnishings, et cetera. And you are correct that at some point (impossible to know when since my crystal ball is broken) your mother may require the care home again.

Here are things I wish someone had told me, when I placed my mother in her care home: being in a care home means:

-my mother is safe and I no longer need to worry about this
-the nursing staff makes sure she takes the correct medications, on time
-she is in less pain from her chronic arthritis because of taking her meds
-her anxiety and depression are better because she is taking her meds
-she sleeps better
-she eats better (she said she was eating properly but she wasn't)
-she is cleaner and wears clean clothes(she said she was washing and doing laundry but she wasn't)
-she is no longer anxious or afraid (the anxiety was horrible and she spent all her time trying to manage it, to no avail)
-she no longer has to endure trips to the doctor, which she hated, because the doctors come to the CH
-she consented to an eye and dental exam, which she'd refused for years, so now I know she has the right prescription and her teeth are okay
-there is someone for her to talk to 24/7 (she was isolating herself in her flat and had little to no social interaction, despite what she told me)
-she participates in activities
-she goes on an outing at least once a week with the CH and my husband and I take her out on weekends; this is more outings than she got when she was at home, and those were mostly to the doctor or the grocery store. Now she can have fun instead of going places she "has" to go.
-she no longer mostly sits alone watching TV and being anxious and unhappy
-she no longer has to cook, clean, shop, do laundry, pay bills, etc
-she no longer has to WORRY ABOUT cooking, cleaning, shopping, laundry, the bills, etc

Basically, she is so much better at the care home than she could ever have been at home, even with assistance, which of course she refused. I am sorry the situation was forced on her the way it was, but it's actually for the best. I would never have believed that it could be okay.

You also have to remember that even if you're not giving the hands-on care, you are still a carer and it's still a big job. You have a right to your own life (I didn't believe that at the beginning, either, and am still not sure I do, some days).

The fact that you're carefully considering the options, and want what is best for your mother, says you are a good person trying to do the right thing. That goes a long way.

And I am so glad to hear she is stable and hope that lasts as long as possible. As you probably know, it doesn't last forever. Dementia is a horrible disease and she will have other symptoms at some point.

I'm not saying you shouldn't move her home with a carer. I'm not saying you shouldn't place her in a care home. I'm just saying, think carefully about what you do, and know that whatever you decide, it could work out.

This is a safe place to come and vent, ask questions, and talk things through. Come back anytime!

 

[Isabella41]

I had a terrible journey with my mum a couple of years ago. It was plain to all that she was not coping on her own in her flat with 4 calls per day provided by social services. She would deteriorate and then we would manage to coerce her into respite for a few weeks. She'd get back on her feet and would be in wonderful shape and be so convincing that she was perfectly able to cope and she'd insist she had just been unwell. She moved into the care home permanently 2 years ago and after about 6 months like you I really did consider moving her back out as she seemed so able and was talking a good talk. I discussed it with the social worker who told me in no uncertain terms that mum was as good as she is because of where she is and if she were to go back out to liviing on her own it would only be a short time till the cycle started over again. I took her advice.
I think that the home that is referred to is a mythical place that they all want to go where they feel safe. Mum always thinks she could be happier if only she could have X or be in Y or do Z. I had to accept that this happiness she is seeking will never be achieved.

I think if you were to take your mum out it would be a temporary measure as unfortunately this darned illness is a progressive one. You would be taking on a massive undertaking with so many conditions that are outside your control. You would need to in effect become a small employer as no one person could be a carer 24/7 week in week out. You'd need to plan for holidays and unexpected things like carer sickness. What if your mum just doesn't gel with the carers. The expense alone would be huge.

At present you can enjoy the nicer aspects of being a secondary carer. You can sit with your mum and chat. You can take her out and enjoy just being with her. Have you sought advice from any of the professionals involved in your mum's care and if so what are their thoughts on this.

 

[Angela T]

She is still mobile, conversant, and likes going out, anywhere, as much as possible which is not possible in the care home. She wants to leave the care home and return to her flat. I have told her this is only possible if she has a live in carer.

I am in such a dilemma. The best thing for me is if she stays in the care home, 24 hour care, everything looked after etc, and if she deteriorates she is in the right place. And then I have quality visits with her, massaging her feet, watching TV, doing the crossword together etc.
But I think the best thing for her is to be back home with a carer. She can then do normal things with supervision: shopping, cooking, laundry as well as have 121 care, the food she likes, and a carer who can take her out everyday and to her activities and clubs she used to belong to.

Do I let her make the most of her independence while she can (she's 77) or keep her in the care home? She is self-funding and I think the cost will be similar.

Would your mother accept a live-in carer ?

If she would, and if you are around to keep an eye on things, and your mother has friends etc so she can continue to socialize and go out, I agree, it would be better for her to be in her own home.

I think a care home is the last resort - I moved my mother into a CH in January because she was no longer able to look after herself but she absolutely refused carers coming in and would never have accepted live-in care. But if she had been compliant, I would have much preferred she stay at home.

Life in a care home is safe, but it can be boring - and it is depressing, I think, to be surrounded by other severely ill residents all day long... if it were me, I would choose live-in care in my own home every time...

Go with what you feel is right for your mother, and for you...

 

[RedLou]

I had a terrible journey with my mum a couple of years ago. It was plain to all that she was not coping on her own in her flat with 4 calls per day provided by social services. She would deteriorate and then we would manage to coerce her into respite for a few weeks. She'd get back on her feet and would be in wonderful shape and be so convincing that she was perfectly able to cope and she'd insist she had just been unwell. She moved into the care home permanently 2 years ago and after about 6 months like you I really did consider moving her back out as she seemed so able and was talking a good talk. I discussed it with the social worker who told me in no uncertain terms that mum was as good as she is because of where she is and if she were to go back out to liviing on her own it would only be a short time till the cycle started over again. I took her advice.
I think that the home that is referred to is a mythical place that they all want to go where they feel safe. Mum always thinks she could be happier if only she could have X or be in Y or do Z. I had to accept that this happiness she is seeking will never be achieved.

This is absolutely true.
Question: was she happy at home before you moved her? If not, why would she be happy at home now?
How are you going to find this mythical perfect carer, whom she will get on with, who never gets sick or wants leave, or simply changes their mind about the job - particularly if she deteriorates? (If you have a rota, she will moan about some of them and only like a few - believe me - had all that with my father.)
What will you do if she makes it clear the carer she wants is you? (My father to me and my siblings: 'What I need is for one of you to move here and look after me.' Sorry, Dad, not happening.)
In short - at what point do you draw the line of someone who no longer has any empathy for anyone else dictating your life?