Mums not too bad but I'm struggling

[CynthsDaugh]

Hi,

Bit of background - my Mum has mixed Alzheimers and vascular dementia as well as mobility problems caused by collapsed vertebra, osteoarthritis and osteoporosis. She has been living with me since August 2014 following a bad fall in her retirement flat. She usually goes to daycare while I am at work (full time) but sometimes refuses to go which does cause me worry.

Now Mums dementia isn't really that bad, she still knows who I am and who my sister is but has forgotten all her (about 10) cousins. She can't follow the plot of a TV programme but enjoys watching things without a plot (eg Police Interceptors!), but struggles with switching the TV on or off. With her mobility problems I do all the 'fetching and carrying' getting her drinks, warming up her wheat bags etc. when I am at home. Shes still continent, so no problems there at the moment.

3 weeks ago she was admitted to hospital following a silent heart attack (no chext pain etc. so we didn't know) which caused fluid to build up on her lungs. She was in hospital for 2 weeks and has been back home about a week, she's completely forgotten she was ever in hospital which is not really surprising. I have noticed her dementia has progressed a bit - for example I now need to help her get changed or she sits on the edge of her bed not knowing what to do next and she sometimes forgets where the bathroom/her bedroom are. She's very easy going, and does say 'you must get very frustrated with me sometimes'. Well yes I can when it's gone 11 pm and I want to go to bed but she doesn't, but I'd never tell her that!

The two weeks she was in hospital and not in my care has made me realise how tired I am working full time and looking after Mum. Now she is back home it's hit me again - I'm just exhausted! Mum is now also on 12 different medications which I have all planned out in separate boxes for time of day needed but I do feel a bit like a pharmacist.

I am struggling a bit now and also my work is suffering which is not good. My sister lives 350 miles away so can't really help out much although she does visit every 6 - 8 weeks.

I can't afford (or want) to give up my job without losing the home I have worked hard for and never getting back on the property ladder, and I know pre dementia Mum would have never wanted me to even contemplate it.

Basically I'm wondering if it is time for a care home for Mum, but every time I think about it I break out in tears and think I can't do that to her. But I equally don't know how much longer I can go on!

Any advice?

Thanks

Sally

 

[Toddleo]

Hi there Sally. I have not read through your previous posts, but wondered if you have had a chat with social services and had care plans completed for mum (plus a carers assessment for yourself?)

We were granted a direct payment for our mum and used it to pay for carers to come and look after her at home in the periods where I / my sibling could not be there (mum needed someone with her 24 hours per day)

Have you had chats with anyone about this kind of thing?

 

[marionq]

Sally some people love the company and security of care. Although I am at home with my husband and give him a very good life I know that at day centre and when he s in respite he is perfectly happy and would manage fine without me. Stop thinking how you feel and picture things from a mother's point of view. I would never want my daughters to deal with this and neither would your mother.

 

[Amy in the US]

Sally, I wonder if you can see about getting some respite care, so that you would have some time to rest and recover and perhaps be able to think about options more clearly?

I also wonder if you might start to investigate care home options in your area, without deciding to move your mum into care just yet. It could be for respite, or if something happens to you (the flu, a broken arm, a holiday, a trip for work). It's always good to have an emergency plan and to know what the options are.

I wonder if you can get any help with managing things like medications, like a filled-at-the-chemist dossette box or blister packs of meds or something similar. I'm not sure what is available in your area.

You might also look into getting some help for you around the house. Maybe a cleaner or a handyperson or garden help or grocery deliveries would ease your load a bit?

I am sorry to say this but of course you know it: dementia is progressive and at some point your mum will need more care, more assistance, perhaps 24/7 company/supervision. That is a lot for one person to take on, by themselves.

I think you are smart to recognize that you are tired and worn down and to think about options. You might consider what would be your line in the sand, such as incontinence, or your mother refusing to cooperate with personal care, or if she needs medical care you can't provide at home, or whatever that might be.

I will also tell you that the move to the care home was the best thing that could have happened to my mother, albeit in circumstances very different to yours. For my mother the care home offers constant company, not just from staff from also from my mother's "best friend;" they are inseparable. My mother gets anxious on her own so this can't be overstated. She also gets good nutrition, proper medications at the right times, outings, activities, and she is warm and safe and as content as she can possibly be. Nobody is sedated, restrained, or ignored. There is trained staff on duty 24/7, in shifts. There is a consultant GP who sees her every week, and a consultant neurologist who sees her every month. The eye doctor, podiatrist, dentist, and hairdresser also come to her care home. It's not perfect, of course, but the carers are good, and she is safe and well looked-after.

If I may ask, and please feel free to ignore me, but what is it that you think you will be doing to your mother, if she were to move into care?

I don't mean any offense or upset. Nothing about dementia is easy. We are all doing the best we can.

Best wishes to you.

 

[CynthsDaugh]

Thanks for the replies everyone, some things to think about there.

Toddleo - SS aren't involved yet, I may try them but anything would be self funded so not sure how much help SS would give.

Marionq - my head knows where you are coming from, I just feel I owe Mum so much. She was a brilliant Mum who worked full time as a Health Visitor specialising in children with special needs, while bringing up 2 daughters single handed and also looking after her mother who was dying of breast cancer and her father in early stages of Alzheimer's. My heart says she deserves what she wants and currently that's staying with me. Mum does like going to daycare, which is at the home I want her to go to whenever that is.

Amy in the US - before the hospital admission I was thinking about respite (which would be in daycare home), in a way I got 2 weeks of that while Mum was in hospital. In only 2 days of her being home I felt more tired than when she went in! I get food shopping via internet and delivered and don't have a garden so luckily I don't have to worry about that. Sorry about saying 'I couldn't do that to her'. Bad turn of phrase, can only say I was feeling very emotional putting all this in writing. What I really meant is that's not what she wants (who does!).

Thanks again - this place is brilliant!

 

[Kevinl]

Basically I'm wondering if it is time for a care home for Mum, but every time I think about it I break out in tears and think I can't do that to her. But I equally don't know how much longer I can go on!

I always said I'd never let my wife go into a care home but circumstances changed, she got sectioned and is now in a care home and it's **** brilliant, she's better off, there's someone there for her 24/7 in a way I could never be.
A good home is that a home now a granny warehouse, I visit daily, know all the residents and most of the regular visitors and we all feel that what we've done is for the best.
K

 

[Amy in the US]

Sally, no worries. I know it can be hard to articulate this stuff, out loud and/or in writing. I was sort of pushing you to say if you had any particular idea about your mother going into a care home, like you would be abandoning her, or be a bad person, or feel you'd let her down, or something like that.

Of course nobody ever really wants to see their family member/loved one/PWD go into a care home, and even more particularly, we don't want them to be ill or need that kind of care. Nobody would want that.

But who would want to go into a care home? My father told me, in no uncertain terms, that if he ever required that kind of care that I was to find a nice care home and send him off and not look backwards, that he wanted me to live my life and not be his carer. He was very clear about that.

And if it were me, and I had an adult child, knowing what I know now, I would tell them to find me a nice place to live and they should keep their jobs and families and homes and lives as normal as possible. I wouldn't want them to give up their lives to care for me.

I don't mean that in any kind of judgemental way or as any comment on what others choose, have chosen, or will choose to do. Every family is different, every person with dementia is different, and we all have to make the best choices we can in the circumstances we find ourselves in, with the information we have.

And of course, none of this is easy.