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Also New to dementia journey - Carers UK Forum

Also New to dementia journey

Tell us a bit about yourself here.
Hi. I'm new to this also and have had my mam living with me for 2 months. She has altzhimers and I never imagined how emotionally draining it would be. She has had 3 urine infections in that time and I just worry all the time about what she is going to get next. I feel frustrated because she can't do the things she used to do and I'm finding the lifestyle change really hard. I know I'm not the only one going through this and I hope it gets better with time.
Hi Karen. Welcome to the forum. Sad to hear you are having a hard time with your mum. It is very emotionally draining. I remember only to well the fear of yet another UTI.
Have you any help with your mum?
I have a sister and brother in law who we visit about 4 times a week, and she now has a place at a day centre but as she keeps getting ill she can't go all the time which means I end up in the house all day. That might sound selfish but that is one of the things Im not used to. I also look after my sisters children 3 days a week.
Karen hi - the mods may move your post to a separate thread, so you have a 'place of your own'! In the meantime, yes, when a relative has dementia it's a grim, grim state of affairs alas (with me it's my MIL).

You say you look after your sister's children too. I would suggest that it's going to be a question of looking after your mum, or your nephews/nieces, but NOT both. If your sister can't see why you can't do both, make her look after your mum for a few days in her own house, and see what opinion she comes to then!

To be blunt about it, paying for childcare is a LOT cheaper than paying for residential care for someone with dementia. My MIL pays £100 A DAY for her care home. No child minder would charge that much!!!!

In all of this, remember YOU are important to, and YOUR LIFE is just as deserving as anyone else's. That means you should get something out of this situation, not just your mum and your sister.

Wishing you all the best - kind regards, Jenny
Hello Karen and welcome to the forum :)

I have split your post (and replies) from where you posted so that you have a topic of your own, hopefully more members will be along soon to welcome you to our online 'family' :)
I agree, that if you are caring for mum you can't care for your sister's children too. Have you had a "Carers Assessment"? Has Mum had a proper "Needs Assessment"? Both are done by Social Services Department (SSD) and you should have a written draft copy to approve and amend. (Some SSD accidentally "forget" but these are legal entitlements. Have you claimed Council Tax exemption for mum on the grounds of "severe mental impairment". Claimed Attendance Allowance, become mum's DWP Appointee (so you can legally deal with all benefits).
Time management as a carer is vital. Look at every single job you do and ask if it can be ditched completely (do away with garden borders) or done by someone else (gardener, domestic help). Do you have any mechanical slaves (dishwasher, tumble dryer, washer dryer). Finally, if mum moves into residential care, she will be "self funding" if she has more than £23,000 in savings. If this is the case, then mum should be paying you for the care you give, a substantial amount each week. I know this is a touchy subject, but if mum lives a long time then residential care may be the only option, at £1,000 per week it soon gobbles up any savings. If mum pays you now, from her savings, just see it as getting some of your inheritance on a weekly basis. After all, you are doing the caring and you, not your sister, should be recompensed.
Hi. Thanks for the advice. We have had a social worker as she was in a care home for 2 years and we didn't think that she was getting the best out of life. So me and my sister decided to take her out. The social worker did do loads of checks to make sure it was right for her.( She also got the referal for the day centre) . So me and my sister made the decision that I would give up my job and have mam living with me and as I already babysat for my sister, we could manage it between us. ( so we thought ). Financially I am fine. I just wasn't prepared for how restrictive it would be because she keeps getting UTI's and she then can't go to the day centre.
I also think think that I wasn't prepared for the mood swings and the verbal aggression of her condition as I never saw that when I visited her in the care home.
My sister and brother in law do help a lot on an evening and weekends but they just can't see it the same way I do. I just hope as I get used to this new lifestyle it will become more manageable.
Hi again Karen.
I'm going to be rather daring now and ask if you could / would consider a care home again.? As you know, sadly, any form of dementia doesn't get better. The odd exception,in the case of another members spouse, but it is exceptional. You, then can go back to regular visits, back to a mother and daughter relationship and have some time for yourself. My husband is in a nursing home as his needs are complex. I visit regularly, as do my family. It's rare that he doesn't have a visitor each day. It's heartbreaking, but his needs and care are paramount to us. I apologise if the suggestion of your mum returning to care is offensive to you. Just a thought for both you and your mum's well-being.
Karen, hi again (glad you've got your own thread now!)

If your sister doesn't 'get it' about how difficult it is to look after your mum, then swap your mum for her kids for a week! ie, mum goes to stay full time with your sister for a week (you stay away) while her children come and spend the week with Auntie Karen. Believe me, after a week 24x7 of your mum, your sister WILL 'get it'!

I have to say that I think that your mum living with you is likely to be short term only. As others are warning, dementia only gets worse, and her behaviour may well become more erratic - the disease affects people in different ways. My MIL became very 'dependent' but other than that is very 'sweet-natured', no aggression or anything like that (no appreciation of anything I did for her, but that's a different issue ,and all too common as well, sigh).

But, looking ahead, the prospect is bleak, and there is no other way to say it. If 'something else' does not carry your mum off, the dementia will - it will drain her mind away from her, and leave her as a kind of 'shell'. My SIL's mother ended up like this, just lying in bed, staring at nothing, unresponsive and uncommunicative, until 'one day' she just faded completely and 'stopped' (it's the dementia reaching the final part of its grim journey, into the part of the brain that controls the heart and breathing).

Before then, however, you could have a whole range of 'difficulties', from double incontinence (that's my MIL now) to 'sun-downing' (agitated restlessness as soon as light levels fall), to sleeplessness, to wandering off (that's what my MIL does if she's allowed to), to aggression and confusion and 'not knowing you'.

It's perhaps indicative what you say about her mood swings and aggression not being 'on show' when she was the care home. It could be because they only occur at certain times, which you didn't happen to be there for when you visited, or because the staff were more skilled at diverting her or containing her behaviour, or even, perhaps, because she was being mildly tranquilised (my MIL is on low-dose diazepam to keep her 'calm').

What might be prudent, therefore, is, as others are suggesting, to re-think the care home option, perhaps casting further afield? (My MIL is actually 200 miles away from me in the westcountry! She's self-pay, and it's significantly cheaper down there - 'only' £700 a week instead of £1100 in the home counties where I live. I fortunately have family in the area, which is why I chose it for her current home, and can stay down there, and I have a little 'holiday house' of my own there as well. That said, it's different for me as she is my MIL, not my mother, so only seeing her every few weeks when I visit isn't a stumbling block.)

Again, all that said, even if you do, at some point, have to opt for a care home again, in the meantime do make the very, very most of what time you have with your mum while she still has her 'faculties' to any extent. If, say, she still recognises people in photos, and remembers her youth, do chat away to her and get as much 'family history' from her as you can. Do with her what you both enjoy, and maximise your togetherness.
Even with advanced dementia, my MIL still enjoys being taken out for drives, and I make a picnic cream tea, park near the coast at a nice view point, and she enjoys her cream tea as well.

I do hope I'm not sounding too 'gloomy' but I think with dementia one does have to be prepared for the worst, but also to make the most of them while they are still 'themselves' to any extent at all.

Kind regards, Jenny
Hi. Yes eventually we will need a care home again, and I know she will get worse, but as she still remembers who we are, and she can still enjoy her niece and nephew we are trying to give my mam a bit more enjoyment of life while she can. All she was doing in the care home was sitting watching the tv or sleeping every time I went in. I will choose a different one next time.
I am still seeing friends when I can.
I'm not sure if it's a form of grief I'm expeiencing, watching her as a shell of what she was!