Carer of Alzheimers patient finding it mentally difficult

Upthewalls1

I feel so selfish and such a bad daughter but I'm finding looking after my mother who has Alzheimers very very difficult and draining. She is only 71 and was diagnosed a couple of years ago but its escalated in the last 6 months. She lives alone and only recently stopped driving. Shes physically quite fit but has lost alot of weight (and she was very small to begin with) because of forgetting to eat. There is no family etc to help me with this, just my husband and my teenage kids. She lives 15km away from me and I work fulltime. I have put plans in motion to have her move in with me but that will be about 6 months before the extension is ready. She doesnt need help washing or dressing etc but she would wear the same clothes forever to I get her to change the clothes and I wash them, I bring her shopping and buy as much ready to eat food as possible (and she gets meals on wheels 3 days p/w), I ring her to remind her to eat, I cook for her when I visit, I do her housework because although shes capable she just forgets it needs doing, I take her rubbish away, pay all her bills (from her own money), order her oil, make all her appointments and take her to them, bring her out for exercise, drives, lunches, getting her hair done, going to bingo, going to Mass etc. I love her and she is a great Mam and Granny so I feel so guilty that I absolutely hate spending time with her. I'm exhausted from my job, running my own home and all that I have to do with her but that I can cope with and when she moves in with me all of that will be easier but the worst part is that I get no pleasure from being with her and I know its not about me but the guilt is terrible. Tbh I think I'm grieving the person I've lost and dont want to spend time with her because I dont want to face up to it. Theres no conversation only the same things over and over ie the weather is warm the weather is cold, the same few sentences over and over again, the same questions, and I get so disheartened that I bring her out so often and try to keep her stimulated and give her nice times and enjoyment but then she thinks she hasnt been out anywhere in ages. People have suggested getting a carer for a few hours to take the load off but at this stage she wouldnt accept that. Shes always been very private so while shes at home I know she'd push against that. It might be easier in my home. This is just a rant. Probably no answers to it but any other carers I know seem to cope fine or dont have these terrible selfish feelings and I could be in this situation for many years as my Mam is so young.

naughtysmurf

Your description of your mother is very similar to my own, she was medically assessed, advanced dementia, & the medical advice we were given was that the best option for her was long term residential care. Now after a bedding in period, she is very content, she is looked after 24/7, we don’t have the endless worry about where she is, whether she is eating, washing, wearing clean clothes, taking her medication at the right times etc etc

i doubt you will be able to keep doing what you are doing without it affecting your own health & maybe your relationship with your husband & family, you have no need to feel guilty, you can only burn the candle at both ends for so long, you’ve done your best & now you need help. Looking after her at home will be exhausting too.

we take our mother out a few times a week for lunch, coffee etc so she’s not just left there like many other residents & I’m completely guilt free because I know it’s best for all concerned. Those outings usually last 2-3hours

I’d advise you to talk to your own gp about the situation & how it’s affecting you & also get advice on what’s actually best for your mother & you

what you are doing is just not sustainable in the medium to long term, it’s going to make you ill

Best of luck

@naughtysmurf

Having been in your shoes and helped look after my grandmother with alzheimers, and then my own mother with dementia, I 100% agree with everything @naughtysmurf has posted.

Alzheimers is progressive, your mother is only going to deteriorate further. Its simply a matter of how rapidly. You need to look at the medium to long term, because the time will come when she will require 24/7 round the clock care, and you simply won't be able to meet her increasing needs, as well as our own needs, and the needs of your family.

I totally understand the "grieving the person she was" part as well. Don't beat yourself up. Your feelings are completely normal.

Purple Mountain

Is there a support group for carers that you can reach out to?

AndrewJRenko

Sorry to hear about your difficult situation OP.

You might want to see if you can additional supports asap, such as in-home care visits to help with washing and dressing, to take a little bit of pressure off you.

In the longer term, you might want to think very carefully about the option of taking her into your own home. I know you want to do best by her, and I know her generation were often hugely hostile to the idea of a nursing home, but it really is a huge commitment to take her into your household, with huge pressure on you and the family.

What happens when you want to go on holidays, or go away even for a weekend or to attend a wedding? What happens when you get sick, as you will.

If you are doing household renovations to accommodate her, please speak to experts about the design. Make sure there is a joist in the ceiling where you can mount a hoist. Make sure you have level access to the bathroom and the rest of the house.

Don't rush into those long term decisions.

niallb

Sorry to hear how difficult things are at the moment.

It's really hard.

I don't know what part of the country you're in, but there are Alzheimers Cafés around the country.

We got great information from the one in Dunshaughlin, Co Meath. Did you know that a pharmacist can make up a capsule with a morning dose and a delayed afternoon dose of some medicines so that you can time your day to only have to visit twice rather than three times!?

There's a list of local Cafés around the country at https://dementiacafe.ie/cafe-finder/

https://alzheimer.ie has good information too.

Do you have an enduring Power of Attorney drawn up to allow you make decisions for her in the future? You say there's only you, so it's important that you get this drawn up if it's still possible. Talk to your mum's GP about this as they will need to be involved as well as a solicitor.

You should also chase up the Public Health Nurse for the area as you may be eligible for respite care. Eligible doesn't mean you get it though as waiting lists are long. In my mum's case we were offered it fairly soon after realising it was an option as we had been dealing with her for three years at that point at home. Respite worked out really well as she went to stay in a local home for a week and discovered that unexpectedly she liked it!

Even if you're not yet eligible for respite care, the nurse will be able to start a process to see if you can get in home care for a few hours a week.

We were told to make an effort not to drop in to see her over the respite period and even though we didn't go far, we got to do a lot of things like go out for dinner that had become very rare!

https://www.boards.ie/discussion/comment/120301368#Comment_120301368

Good point raised by niallb.

The legislation around this is due to change very soon.... from Citizens Information:

Part 7 of the Assisted Decision-Making (Capacity) Act 2015 provides for new arrangements for those who wish to make an Enduring Power of Attorney (EPA). The Act has been amended and is expected to come into force from 26 April 2023.

So I suggest you look into what you can do immediately.

ohnonotgmail

Some great advice already posted but you must not start blaming yourself for feeling the way you do. Feeling that you are already grieving for the loss of your mother is natural. Reach out the public health nurse and ask for home care. you can't do everything on your own without paying a cost to yourself. I tried to do it all on my own and I nearly ended up doing something stupid. With regards to power of attorney do it now, do not wait. It can only be done while she still understands what she is signing and it needs to be signed off by a consultant. The alternative is your mother becoming a ward of court which is not an outcome you want.

Fionne

Dementia has been called "the living death" because of it's tendency to have family watch the person they knew gradually disappear even though they're still living and breathing.

Never feel guilty - you're under a lot of pressure taking on this kind of responsibility and nobody would find it easy.

My partner cared for his mum for several years before she died 6 years ago. They had the most wonderful relationship, so affectionate and loving and then due to the dementia she became hostile towards him at times, knowing exactly what to say to hurt him. Not her fault but very hard to cope with when you're doing your best.

I would definitely look into getting help - your mum may have been resistant to outside help before but her mind isn't the same now, she may well take to it easier than you think. It's not just help for your mum, it's help for you. My mother-in-law lived on a farm, didn't even go to Mass, she was never used to people coming to the house but she ended up being much happier when the carers were there and far more co-operative for them than she was with her son who she'd known all his life. Like your mum, she'd forget to eat and someone would have to stand over her to make sure she had anything, if you left the plate of food there, she would ignore it.

You need to talk to someone who's been through it or can help you to navigate your way through the process. Contact the local district nurse, find out your options. I know at the time my partner was looking for help, there was a Home Care Package which gave X amount of money towards private carers outside of the ones provided by the HSE. I think that's changed now but Citizens Advice or maybe the Alzheimers Society would be able to advise you on what help is out there. You can't do this on your own, take all and any help that's offered.

homer911

Hi OP, you have my sympathies, have been through it all with my Dad. You need to get your mother's name down on nursing home waiting lists - if she doesn't need it now, she will before long - its sad, but she may not last the six months and even if she does, you don't have the capacity to deliver the full time care she will need. The Alzheimer's society also run some day-care centres - my Dad went to one for a while until he needed the nursing home. Be aware that any change to your mother's environment is only going to make things worse - she won't be able to cope. Plan for the worst, hope for the best.

yourdeadwright

https://www.boards.ie/discussion/2058286271/carer-of-alzheimers-patient-finding-it-mentally-difficult

Going through the exact same thing right now but with my own Mam & Da,

My mam is further along the road than yours so have even more issues & my Da is at the stage you descried above,

I completely understand where your coming from it the toughest thing you will ever do, you lose them twice, Its so hard to cope because your angry at the situation itself & then the things that arise daily are so hard to deal with ,

They live with me , my wife & two kids so we had no choice but to get cares help 3 times a day & its the best thing we ever done , Your mum will end up enjoying the carer visits as it just because part of the routine & its a lifts burden from our shoulders ,

Nobody copes fine & if they say they do they are lining to save face, its extremely difficult but when they are gone you will know you done everything you possible could to help ,

The stage will come where they have to go to a home basically for there own safety so it doenslt last forever ,

Its ok to cry & question it all ,its ok to ask for help , its ok when you eventually have to send them to a home , just remember your doing an amazing job & your mother would be proud of you ,

lulu1

Some lovely sympathetic replies to this post they almost have me in tears because i see changes in a member of my own family which I am worried about. They are not too bad but when they are out and about they meet people that the should know but they dont recognise them. I havent lived with a person with demetia. Would this be a symptom?

homer911

https://www.boards.ie/discussion/comment/120732365#Comment_120732365

Yes indeed, it would be worth talking to your GP or contact https://www.understandtogether.ie/ or https://dementia.ie/

There are treatments that can slow the progression of dementia if used early