Am I mad moving in with Mum?

[ChristineR62]

Would it be prudent of me to start looking at care homes or is there really no point until we're actually thinking of placing Mum in one? I would appreciate insight into this process please.

A live in carer? Does anyone have any experience of this? Are they more or less expensive than care homes? How would you go about getting one and what are the benefits and drawbacks?

Hi, Lerros

My personal opinion is that it's never too early to start looking at care homes. Last year, I envisaged spending my leave this year looking at care homes; however, by Christmas last year, Mum was in a care home, where she is now and will be for the foreseeable future. In our case, it all happened very quickly, and as luck would have it, of the very limited list the social worker gave me, I picked what I think is the right one for Mum. What you don't want to happen is to reach a crisis point where you have very little time to look for a suitable home.

As for finding a care home, as a starting point, you can look at the Care Quality Commission reports online, but they may not always be very recent, or a very good indicator of quality - Mum's home has the same two-star rating as another home where I wouldn't send a dog, and they are worlds apart in quality. The best thing you can do is start visiting the homes in the area - not a process I actually got round to doing, but I'm sure there are others here who will give you a better idea of what to look for than I can. I suppose a basic approach would be to ask yourself the question, would you be happy to live there?

Regarding a live-in carer, I'm not sure, but I think there may be two ways to approach this: you can employ someone via an agency, in which case I believe you would probably just pay the agency invoices each month, but since the agency will add their cut to the employee's salary, that will make it more expensive; secondly, you could employ someone direct, I think, but then you are in the position of being that person's employer, with, I imagine, all the legal obligations that that entails. Again, people with far more experience will give you more definite information, I'm sure.

Hope some of this helps.

Very best wishes
Christine
xxx

 

[nocturne]

I had Mum to live with me for 3 years. LIke your Mum she has vascular dementia and like yours for some time things were not too bad. Then she had a bad fall. It was after that she came to live with me and as time went on the stress became unbearable and I did not have two young children to look after. She hid my things(had to buy a new watch - found the old one 6 months after she went into care, stuffed in an old slipper wrapped in several plastic carriers and hidden behind the wardrobe), she took the post as it came through the door if I was not around and put it in odd places like her washbag - soggy bank statement- took the clothes waiting for ironing and put them back in with those waiting for washing, took washing in from the line a few minutes after it had gone out so it was still wet and folded it up and put it away, did the washing up with the floor cloth and the washing powder for the laundry, dried up with the hand towel not the tea towel, took all the tea bags out of the containers and hid them in the wardrobe, put the cereal in the fridge and the milk in the cupboard, she wandered about at night looking for her Mum and I got about 4 hours sleep a night. She did not take well to outside carers so you might do better if your Mum copes with these but please think about it. No one knows how this terrible disease will progress as everyone is different but the behaviour I have outlined seems quite typical. It is going to be very hard to deal with when you have two small children. Indeed it could be quite frightening for them too.
I can't offer much in the way of alternatives. If your Mum is OK with outside carers then this seems the way forward at present but it is well worth looking at homes as the good ones often have long waiting lists and if you get her name down you don't have to accept the offer if you are not yet ready. Sadly most people seem to come to this in the end, for their own safety and the carer's sanity. You can check out costs as well to see how they compare to home care.
It's a very hard decision to make but at least you are going into it with your eyes open which is probably more than I did!
Jan

 

[muse]

Hi Lerros

When I realised that my husband was suffering from dementia, my first "deadline" was: if he becomes incontinent, I won't be able to cope. This has now arrived, and I'm coping. Because he's happy at home, and I'm 90% sure that he wouldn't be happy in a care home, just yet.

My next threshhold is: if I don't get a full night's sleep, I'll have to make the dreaded decision.

To answer your question: I've put his name down on a waiting list for just about the best care home in the area (much better than any emergency solution). If/when a place becomes available, I'll have to make the decision as to whether he's ready or not, whether I can survive without it or not. I don't have to take it, but if we're ready, it's the best choice. So yes, start looking. Emergency solution = no-choice solution.

Sending you my best wishes

 

[Resigned]

home care

Hi Leros

We had home care for my mother for the last 6 months. It seemed to work well but that was maybe because we wanted to think it was the best solution and enabled us to keep our mother in her own home.

However, the carers didn't stay long, only about 8 weeks or so, and everytime they changed over, my mother became very confused and agitated and aggressive. It took her about a week to calm down from this. She also didn't recognise that she needed to have someone in the house to look after her, of course (not counting all those people who lived upstairs, naturally )

All but one of the carers were fine, had experience with dementia. The last carer, who brought everything to a head, wasn't experienced in dementia and let my mother walk out of the door and disappear without realising she had gone. She also took my mother to church one morning and left her there for the service while she went back home, thought it would be ok as mother had said that she wanted to go

It's an expensive option, £700pw and all the household bills too. Of course, no house maintenance gets done so the house deteriorates.

We've pleased overall that we did it, but have now moved mother into a care home as she no longer recognises her own house or belongings, so gets no benefit from staying there.

Hope you are able to make a decision you're happy with. I found all the good advice/suppiort from the members on his forum very useful.

R

 

[CaPattinson]

care home

Dear leros,I'm so glad you have a 'clear head' now, enough to put things into some order. Someone said putting mum's name on a waiting list - sounds like a good idea. When my mum needed to move to a care home that's when we looked round. Whatever you do my thoughts are with you tke care xxx Chris

 

[Lynne]

Dear Lerros

I think you may find reading this thread useful - http://forum.alzheimers.org.uk/showthread.php?t=24351

 

[BeverleyY]

Hi

Well, I am probably going to go against what everyone else has said here.

My Dad is driving me round the twist at the moment, but it is still manageable.

He has lived here over 7 years now. He has vascular dementia & alzheimers.

When he and Mum moved in (sadly we lost Mum 2 years ago) my kids where 8 and 3ish.

They are now 16 (just and 10 just). Is it always easy for them, me and my husband?? No. We manage to also juggle pretty full on jobs which involve lots of travel. We just take turns - even the kids do their bit. My 16 year old is a dab hand at dinners when she is needed.

Would I change it?? No way. Not until I REALLY can't cope.

Fortunately we didn't take this on to make financial life easier, to be honest we're worse off because we wouldn't need to live here if it wasn't for Dad. We could downsize and buy a house half the price. I just do it because I want to.

From what I have read in your posts, I certainly don't think it is something you should take on because if the biggest driver for doing it is financial, it's not the right one. You have to want to 'care' and you said that that is something you don't want.

Don't do it, you'd only end up resenting your Mum if you don't really want to do that caring role.

Best wishes.

Beverley

 

[PostTenebrasLux]

The art of Compromise

We all want to protect you Lerros and shout out FIRE for you to take heed. I agree with every one else above. ... and yet...

I feel for you wanting "to do the right thing" by your mother, yourself, your partner and your children. It seems that your primary responsibility now is towards your needy children. Your mother has lived her life with her own set of priorities with your father/her husband/partner etc. It is for oneself to look out for oneself in old age. If one's children (not everyone has children of course) are able, willing to help, so much the nicer and better. So, wherein the compromise?

a) not ideal for your brother marrying and having his new bride move in with an ill mother-in-law immediately as they start married life. It can be done, but strain on their relationship is inevitable too...

b) post-natal depression can start anywhere up to one year after giving birth - you are not quite out of the woods yet.

c) relationships could be strained if your partner is out of employment, "snuggling in" at your mother's (as seen from SS and the outside world). Your brother or his wife might see it as your mother being taken advantage of whereas reality may be quite kind and caring..

d) on the other hand, your partner could possibly be house daddy whilst you are out working, but in your own home, not your mother's. You could both work part-time, i.e. share the children and babysit when either of you are working.

e) your brother might stay 3 weeks with your mother and you spend the fourth week a month living in with your mother and being in charge of her. Your brother would have that week off (to be with his fiancee/bride) - advantage: you would have hands-on experience/care/awareness for your mother, giving carers a break (or in time having them work alongside you). It could strengthen the sibling relationship, you grow together. Your partner would be in charge of your older child (nursery school/child care swaps with other parents?) for that week and you may possibly find it easier to take the baby with you (initially)

f) as women are multi-taskers, you can also have a physical chance of addressing many emotional tuggings at the heart strings: spending "quality time" with your mother and assist her properly with her needs; have a family relationship with your partner and children; get a break from the children (albeit being involved in the much harder care of your mother). You can feel that thus that you are addressing all aspects that are important in your life without letting your mother, partner, children, brother and yourself down.

g) sit down and discuss with your brother his views, how his fiancee/bride fits into the picture, what he is prepared/able to do and what constructive ideas he has himself, how he views your own situation in the bigger picture, what he "expects" from you and what you agree to do together and areas of discomfort. Take the bull by the horns. By facing the "ugly" your battle woes are considerably weakened. Apart from your brother, who else could help? Which of your girlfriends would be prepared to look after your little ones 2 days a month on a relatively regular basis?

h) think about what you find particularly hard/unpleasant to deal with and see how you could change that and who could help you.
We care for my cousin in her own home, 12 years down the line, now seriously ill and way past "demented". The whole family and friends rally round, taking a sort of rota system in caring for her, thus being in charge ourselves with her needs, medical requirements and concentrating on maintaining her functions. This last year she has necessitated a full-time 24 hour live-in carer and we continue the rota. Her husband and children must continue to "have a life" of their own, career-wise and emotionally.

Best wishes forward Lerros! It seems that you and your brother are now the ones needing to take the lead, decisions and responsibilities! Survival of the fittest!
Martina

 

[Clive]

Hi Lerros


I would encourage you to spend just a little time seeing what Care Homes are available in your area for people with dementia so you know what is available.


And whilst I would agree to the notion that you should put your name on a waiting list… my experience with mum was that her name NEVER got to the top of any of six different lists she was on… because no Care Home ever contacted me to say they had a room available.


When mum actually needed to go into a Care Home I found a better one in a different area. I was told on the Monday that there were 13 people on the Care Home waiting list… but having stated that mum was ready to go into their Care Home that very day if only a room was available… by the Friday the waiting list had magically vanished and mum had her room.


Best Wishes

Clive