Am i doing the right thing??

[Sparrowlegs]

My 62 year old mum has been diagnosed with vascular dementia and alzheimers maybe lewy body as well not sure quite yet, however I am her main carer and have been since april when she declined very quickly.

Since this I have been off work for my own medical reason and have been looking after her full time I have found it extremely hard and lost my patience with her at times which destroys me inside, but she never listens, never takes on board what I say and that I do it all to keep her safe.

social is finally involved and they have offered respite for me and mum but mum refuses to go for respite and thinks that she can stay at home on her own and says that I should just go on holiday. I am very wary of care homes for respite or anything else with horror stories about residents being left in wet, soiled clothes etc.

I feel so guilty and know that I have to return to work at some point, but social has offered carers four times a day with day centre and occasional respite, will this be a good thing for my mum? They also said about a care home permantly but it will mean that I could loose my home as I live with my mum, I just dont know what is best for her, at the moment so knows who I am, will she defo forget me in time, will the four times a day work and is a care home a good idea when social said i could defer payments, i mean how much does it cost all this. im stressed out about everything, mum has no money only the house, and I dont earn a massive amount but pay for the running of it. I was going to build on to make the place self sufficient, should I still bother, now that I may have to get a mortgage out if mum is forced into care?? I really dont want her in care can it work that she lives out her days at home or will she just not know who or where she is or even care???

 

[curtainsgalore]

I feel that every case with dementia is different. There isn't a one size fits all.
It's worth giving the 4 carers a day, day care etc a go and just see what happens. My mum managed to stay at home only 8 months and then wandered and became unsafe to stay alone at home, so went in an EMI home. My mum was and is very fit physically and could walk about 10 miles before being found, if your Mother isn't very active it may work longer than our situation.
Good luck with everything, I was a complete worrier and became very fatalistic, what ever would be would be, it was beyond my control when things got worse.

 

[curtainsgalore]

I forgot to say our carers were about £16 per hour and we paid for 2 hours per day.

 

[canary]

Give carers 4 times a day a go.
Mum wouldnt accept any carers and then started wandering at night and knocking on neighbours doors so she is now in a care home. Despite what you read in the media most CHs are not abusive - the carers in mums CH are genuinely fond of her and mum has thrived in there, so dont worry about that, though I understand that your situation is different as you live in her house.

Most people with dementia dont understand what you do for them because they they forget they are not doing things - so in their eyes there is nothing wrong with them, they are doing everything and you are doing nothing for them anyway. They dont take anything "on board" because they cant retain it.

Have a look at this thread - you might find it helpful
http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

Dont try and look too far in the future. Your mums dementia will undoubtedly progress, but in what way no-one knows. Just deal with the problems that you have now.

 

[Worrywart 2]

I'm in a very similar situation sparrowlegs. My mother is 74 and has Vascualr dementia like following brain haemorrhage. She has loved at home for 2 years with 4 care visits a day plus lots of pop ins from family. We cannot now sustain that as I am unwell and my mother has deteriorated - wandering, no insight into danger, forgot how to use remote control and phone, finally set fire to something. So she was admitted to hospital and we are now looking for a csre home. It's awful and I too delude myself that maybe she would be ok at home but no one agrees with me. I would give the 4 care visits a go and day centres if she agrees, my mother wouldn't agree to anything like that as she doesn't think there is anything wrong with her. It's very difficult and I too feel worn out and so frustrated.
Good luck xx

 

[dora]

but it will mean that I could loose my home as I live with my mum,

I don't know whether your circumstances mean that you are entitled to live in the house in the event your mother goes into a care home, but it would be a good idea to find out now so that you know where you stand. You can get good free advice from the CAB. https://www.citizensadvice.org.uk/

There are many good care homes around - as usual, the press are only interested in printing the horror stories. Again, forewarned is forearmed, so if a care home is on the cards, go to have a look round a few, well before you get to the point it's needed. If SS are recommending carers 4x a day, this may be sooner than you think - or not! It's impossible to predict the course of dementia, or as others have said, what will work for one particular person.

 

[fizzie]

This must be so hard for you and your Mum is so young too. I really feel your pain.

You must take advice about the house as soon as you can in any case. I agree that Citizens' Advice is probably your first stop although some solicitors used to offer 30 minutes of free advice - does anyone know if they still do that?

If you can have carers four times a day that is a really good option to go with. Your Mum will settle into a routine and you will be able to stop worrying quite so much

My Mum always thought she could be at home on her own too....it is all part of the condition.....and a lot of fierce independence too. None of us like being told what to do and someone with dementia is no exception lol. In the end I gave up fighting with her and didn't go on holiday, I can smile about it now but at the time I was pretty cross. My Ma died at Christmas after 4 years of caring I feel that I did what I needed to do but everyone is different. You need to do what you feel is right for you.

Our life saver was the lunch club. My Ma went 3 and sometimes 4 times a week on transport and came home early afternoon. If you are offered a day centre my advice would be to insist she goes (initially I had to tell my Mum it was lunch club or a care home but she soon settled in and it was like a second home so the fight was worth it - and I was told my a very experienced Matron that the sooner she went to day centre/lunch club/ carers - the easier it would be) and grab it. It gives you some time and her some stimulation.

I hope that you find the new routine will give you a new lease of life. Thinking of you xxx

 

[Sparrowlegs]

Thank you for all your comments, she is constantly falling and bangs her head a lot. I still have no idea what is best anymore, I want someone else to make the decision