Parent with Dementia

Sinus pain

Hi all, just wondering if anyone has a parent with Dementia? Currently waiting to go in to a nursing home but is very distressed in hospital at the moment. She calls me a lot complaining or confused and I do my best to help her although she gets quite annoyed with me at times. There are a few siblings and we take it in turn to go to her everyday and will continue to do this.

Mentally it’s taking its toll on me though and I’m am feeling very anxious at the minute. I am quite a resilient person but feel like breaking down crying regularly. I am her confidant so she calls me a lot more than she calls the others - who sometimes don’t answer.

Is there any support groups for family’s of loved ones with dementia?

Princess Calla

There's the "forget me not" support group. I haven't used their service and a quick google their website doesn't look the easiest to follow...I think it's very much region by region.

It's a very difficult time. Do look after yourself too, you're no good to anyone running on empty.

anewme

Hi I hope you are keeping well. The Alzheimer’s Society of Ireland has a support helpline and they are excellent. They run workshops for families as well. Our Dad was diagnosed with Alzheimer’s and dementia and was in A and E for six months. The hospital planners wanted to send him miles away but we held our resolve.

This is the most difficult part for the family. The person is in purgatory; the point where they are still with you and know something is wrong. It’s the most horrible time.

Dementia is a cruel disease, where you grieve the person but they are still with you. We still have our Dad, only glimpses.

widgeonidolized

I'm hoping all is well with you. There is a great support helpline run by the Alzheimer's Society of Ireland. Additionally, they host workshops for families.

ebbsy

Ive seen my Uncle, Aunt and Father fall victim to it.

Do not take it to heart. Let the experts deal with it.

Jnealon

Thats a tough one, the fact that your mam is able to call you just shows that disease affects each person differently. My old man had it for nearly 10 years while others I know had it for 2 or 3, it is a cruel disease.

Talk to the alziemers society, there is a group in Lucan that meet every Wednesday afternoon that my Mam volunteers at, you could pop in to one of these.

I would also talk to a solicitor and look at the whole power of attorney side of things, by the sounds of it this will be left to you.

Good luck

Upthewalls1

Hi there,

I sympathise greatly. My mother is 72 and has Alzheimers. She has just moved in with my family 2 months ago. I have no other family at all to help out so its just me, my husband and 3 kids doing it all. I would say my Mam is moderate now. Shes physically very healthy but needs constant attention and wouldn't eat or wash or anything if not told to and wouldn't complete the task unless supervised. Her short term memory is practically non existent. I can tell her we are going to town so get your coat on and if I turn my back for 20 seconds to grab mine shes forgotten what I told her to do and where we are going. Its actually soul destroying. I'm finding it so difficult. I feel smothered, like my life has been taken over. I feel like I've no freedom. I was getting to the stage where my older 2 kids are working and at college and my younger is 16 so my hubby and I were getting a lot of freedom back and now I cant go away for a night without it being this big planned out event with other people involved. I realise this sounds very selfish but its how I feel. We do get out etc, my kids are great to help out but its the feeling of being trapped that gets to me. My Mam is constantly on the go and I'm bringing her everywhere she wants. She goes to a day care for a few hours 3 days a week, bingo twice a week, Mass another day, a carer comes in 2 days while I work for 3 hours 1 day, 2 the other (I had to cut down from 5 to 2 days in work), I bring her to the cinema and plays and seasonal events but she could be busy from 9am to 6pm but isn't happy if she just has to relax and watch tv, look at books/photos for a few hours before bed.

I'm being of no help to you here lol but to answer your question, the Alzheimers society is amazing. You'll have a local coordinator who can give you all kinds of advice. Their helpline I've heard is good too. The public health nurse will help you out with services and the Family Carers Association are good for info too. But as for the emotional toll its taking on you, all you can do is look after yourself, accept that theres really nothing you can do to change things, her reactions etc arent the real her and just telling her what she needs to hear is all you can do. It took me a while to realise this as I felt like I was lying when I agreed with things she said that were wrong but it doesnt help her or me to go against it.

I'd love to know if your mother got in to a nursing home since your last post and what stage shes at, as at some point I will have to look at this option too.

Sinus pain

hi it’s a long time since I’ve been on here and have been through the absolute mill the last year.

My mother did get into a nursing home - one we picked Nov 2023. We had to go through the whole DMRO process going to court to get permission to put her house against the nursing home and fill out the forms etc which was a whole ordeal in itself.

the nursing home was a disaster. Totally unable to cope with someone with dementia - my mother for the most part at the time was able to look after herself - wash and dress and was basically like a visitor if you were to look at her. She would refuse her medication at times and no attempts would be made to get them into her ( put them in ice cream or desserts etc) and when she acted out due to not having medication we would be called.
They called us constantly - if my mother put a foot out of place we got called - it was relentless. Now we were in that nursing home every day - took her out for food - tea - etc - every day. We bought her every single thing she needed, decorated her room - did everything to make her life easier and to help out the nursing home and the more we did the more they wanted from us. My mother had pain in her foot and we asked the doctor for pain killers constantly or an injection but nothing was working and they ignored our request for the injection. The pain was making her delirious.

It all came it a head one weekend I was away and my brother was out for dinner and they were ringing us and of course we didn’t answer as we didn’t see the calls. The next morning they rang my brother and read him the riot act for not answering - the cheek of them.
We removed our mother from the nursing home that week and put her in a new one. (not messing we were traumatised from this nursing home - this was 9 months ago and I still get anxious when I hear my phone ring.)

This new one was slightly better and they tried to work with our mother. Unfortunately due to the pain and missing some of her medication ( NH fault they let her sleep for their own benefit rather than wake her for meds) she had a really bad delirium and ended up in A&E.
It all went downhill from there- she had to be sedated and she ended up getting pneumonia. She got through that but lost the ability to walk and toilet herself - due to muscle wastage from being in bed for so long. I tried to get them get her walking again but it was hard as she was fighting against them as she didn’t understand. I can’t fault the hospital they gave her excellent care.

She was then moved to what I can only describe as a nursing home full of angels. It was absolutely nothing to look at but the staff were unbelievable. She never walked again and went downhill rapidly losing stones in weight between the hospital and the nursing home as she refused food. She passed away in October 2024. She was given so much dignity in that nursing home - I cry thinking about how bad the first one was.

I can say that we spent every single day with her and that her being in a nursing home gave us quality time with her instead of being there to do chores for her.
We never had to do anything like this before and didn’t know what to look for in a nursing home - but I would definitely say don’t judge a book by its cover. The first nursing home looked lovely but I wouldn’t ask them to care for my worst enemy - they just want you drugged up and quiet watching the TV.