Dealing with Dementia symptoms

Specific disabilities and conditions
1

Hello, I have been carer for my mother since 2012 when she had a couple of TIA’s. Since then she has been diagnosed with Parkinson’s, ostio arthritus and the start of dementia. She was diagnosed when in hospital after a fall and I would not recognise it as she was not showing many symptoms but now I have to deal with it. Her main sympton is memory loss of her short term memory. I now have to remind her all the time on simple every day things, for example: how to use her stairlift, pushing down the black knob to be able to swing the chair around to get out of it, where her bathroom is to get her changed, not to fiddle with her alarm when she does not need it during the night, as it goes off and I get up to find that she is OK, only to take the tablets that I have put out for her, not the ones for the rest of the day etc and so it goes on.

Mum always had a caustic tongue and was always very critical about me since a child, (I am now 60), so it grates when she gets caustic these days. I find nursing her when she is ill very hard as I am not the nursing type. Recently whilst having to wipe her bum I was having a moan and she said that she hated having to wipe my bum when a baby so that started off another row. I try not to get sarcastic with her because I know that she is ill but sometimes it is so difficult.

On the good side, she goes to daycare once a week where she has a bath, which I cannot give her anymore, gets her hair done, has made friends and is looked after very well by the super staff there. She also goes there for week’s holidays during the year as my husband and I are self employed.

She gets attendance allowance but when I asked the local council for a carers assessment, the first question they asked was were her assets over the limit, when I said yes, I was told that I would have to do as they did, call around all the care agencies and nursing homes for help! I was not asking for her care to be funded but some guidance for me as I have found that if your caree is self funded then there does not seem to be any help for the carer.

I feel very bad sometimes as I really resent caring for her sometimes, most of the time I can cope but then something will happen and I get overwhelmed with it all. However, many carers have it a lot worse than myself so I try to see the positive sides of it all. Sorry for the long tale but I needed to offload my worries about not being able to get my head around Mum’s dementia symptoms.

2

Hi Lesley,

I always think Christmas is especially difficult for carers. My son with LD will be home for almost a fortnight, as all the usual services shut down, so whilst most of the world is having a really relaxing time, I’ll be feeling like a hamster on a wheel, especially if the weather is bad!!!
Can I ask how old is mum?
Does she own her home?
Do you have a home of your own, or live with mum full time?
Do you have Power of Attorney (If not, get this done asap!

3

Sadly, she is only going to detrioriate - that is the nature, alas, of both ageing and other illnesses, and dementia etc etc.

All very sad, but, sigh, inevitable.

Maybe over Christmas you and your husband should put some time aside to really have a ‘think ahead’ to 2019 and think about what you want your lives to be like by then. Do you still want to be as you are now, but with your mum declined further (except for her caustic tongue!)

In respect of that latter, what kind of mum has she been to you all her life? Warm and loving and affectionate, or cold and detached and critical.?

I ask because, in the end, I do feel, myself, that a ‘good’ parent deserves a lot more ‘care’ from their children when they themselves become frail, whereas a ‘bad’ parent simply does NOT deserve so much from their children!

For the latter kind of parent, I would be unhesitating in ‘outsourcing’ as much care as possible - whether with carers coming in, or your mum moving into residential care.

That’s why BB asked about whether she owned her own house. If she does, it could end up being sold for care home fees, so you and your husband, and any other siblings your mum may leave her eventual estate to, have to consider the impact on any likely inheritance.

4

Thank you ladies. Mum is 87 years old, she lives with us full time and I have POA. Although a bit caustic at times she was a loving mum and still is. She always thanks me when I put her to bed for what I have done for her which makes me sound ungrateful. it is just that I get very tired and sometimes cannot cope. I have decided that should she become bedridden that she will have to go into care as I would not be able to cope full stop.

5

Lesley, maybe this is the time to start having regular respite care, so you can recharge your batteries?

I’m 66, having had 8 operations, I know that I’m no longer the energetic person I once was. The real problem is that you have declining energy as mum has increasing needs. It’s OK to say “I’m shattered and I need a break”. The more help you get from outside sources, the longer you can care for mum, if that is what you want.

6

There should be help for carers out there; as you have discovered it’s finding it that’s the problem. It does not (OK, it should not) make any difference if your mother is self-funding.

Round here there is a Carers’ helpline and a booklet with all sorts of resources listed. If you have the energy, you could try the people who said it was not worth an assessment and ask them how to get hold of something similar in your area. Or just do an online search for carers and your county or local council. There might also be local carers’ groups where you can swap experiences with others.

What is more, my husband was self-funding and I explained very slowly and clearly to Social Services that I could not ring round and find an agency as I was too busy looking after him and he could not do it himself as he had lost his speech. Then they did make arrangements for him and invoiced us and when they did put me in touch with the carers helpline it turned out they offered a sitting service, which was not means tested. The trouble is, it all takes so much energy!

Here, of course, is a good place to worry - and to whinge if you need to!

7

Please check that you are self funding.

The limit is about £23,000 for a single person or £46,000 for a couple, and it is up to YOU, not Social Services, to decide which way you want to be assessed!

8

I’m glad to hear she’s always been loving and appreciative, and still is (apart from the caustic tongue!). Criticism from a parent can become a habit - they hardly know they’re doing it. If you point it out to them, they can be shocked! (Mine was…)

However, as the others are mentioning, the key question to address is your mum’s money - how much does she have, and what is she spending it on!

Before she moved in with you, did she own her own house/flat?

A friend of mine with her live-in dad treats him as a ‘lodger’, and he ‘pays’ for his keep out of his OWN money, and there is no reason why your mum should not do the same.

Unless you desperately want to inherit her money when she does die (and have you got siblings who will put their hands out for ‘their share’ even if they’ve never lifted a finger to help look after her!!!)(Hope not!), then really it would be far better for her to use her money to improve the quality of life for ALL of you right now.

Also, if she never owned her own home, then, the more she/you ‘hoards’ her savings, all you are doing, should she ever need residential care, is saving the COUNCIL money! If you use more of her money NOW, to employ care-workers, let her spend more time in daycare (why only once a week??), having respite care more often so you and your husband get a break etc etc (even if a staycation!), then the quality of life of ALL of you will be improved, to the benefit of all.

Often, our parents don’t want to spent their savings (we have a member here whose dad has POTS of savings and yet begrudges spending the slightest thing on himself!!!), as they want to ‘pass them on’ to us…without really taking on board that is is the looking after them NOW that is SOOOO ‘burdensome’ to their children. (It also doesn’t help, alas, that so often we don’t WANT them to realise they are burden!!! We want to protect their feelings, sigh).

9

Mum goes to daycare once a week, she has a bath, hair done and lunch, has made friends and is looked after really well. She also goes for several weeks respite there as well which is handy for us during our busy periods and also so husband and I can get away for weekend breaks. She is self funding. I will try the carers assesment again after the new year and see what help I can get there.

10

I am an only child so make all decisions. Mum sold her house when she moved in with us and if she needs anything then I get it for her. As with Parkinson’s she is doing quite well today, its on the days that she is not doing well when I cannot cope but as I have said earlier, there are many on this site who have far worse problems than me and I can always have a vent to relieve my feelings! Thank you ladies for reading, I feel better already.