Anyone have any experience of dealing with dementia? Just returned home from seeing my grandma at her nursing home. Fourth visit in a row she hasn't known who I am. She's thought I'm her physio or the maintenance and repair man previously. Today, just no clue. Didn't know my wife or daughter who were there too. It hurts. A lot. Feels very raw and the selfish part of me never wants to set foot in there ever again, just to avoid feeling that pain again. But that's not fair on a wonderful woman, someone who was always there if needed and never asked for anything in return. I just feel broken. I don't know how to deal with this. She's old, she's frail. She's still here and yet she's not. CoVid robbed me of the last of her light, she went at some point over those 18 months. And she's never coming back. Has anyone any tips on dealing with this? Genuinely want to know what people have done in similar situations. If I stop going will the guilt be a burden when she does finally die? Or is the guilt preferable to regular painful visits?
No tips on dealing with it but you're not alone. My mam's in the same situation. I hate going to see her because it's not mi mam; but I know it is, so I've got to keep seeing her while she's still here.
Yes and it hurts like hell. She is still your Grandma and always will be. Go and see her, be prepared to be called lots of different names as she doesn't know who you are, go along with her, If not you will upset her as she also is having to deal with the fact she doesn't know who anyone is. Remember the good times, no one can ever take them away from you and support / care for her the best way you can.
Random thoughts. Accept that a part of your Grandma has gone. You can't change that. Remember the good times, when she was in better health. You are still a friendly face when you visit, and that in itself is valuable, even if she doesn't fully recognise who you are. So if you can, keep visiting. If you find that too much, then accept that and don't feel guilty. From the tone of your post I suspect you have done everything you could for her while she was in better health. Either way, look after yourself and your family.
You're never going to feel good about this mate. Sorry to be so blunt, but it's a horrific disease that we need to try to eradicate, that we haven't managed yet, and you have to deal with it. A coping strategy: It doesn't matter if she thinks you're the physio or the maintenance and repair man, you being a person who she believes she recognises will make her day better. It will make your day worse, but if you can take yourself out of that and reconcile that making her day better is a good thing, that will actually make your day better. The best coping strategy: Take a book and ask her to read to you. She will not have forgotten how to read because the skill of reading is not a memory, it is something that this disease doesn't take away. And while she's reading she'll feel in control again, and she'll feel herself, and while you're listening she'll seem just like your nan. Please watch this: the best line is "It's you who has to change"
I went through it with a much-loved Aunt, more of a second mother and the person who introduced me to Barnsley FC. I feel your pain, and you have my sympathies. The way I tried to rationalise it was that she was there for me from birth, loving and looking after me before I ever knew who she was. So at the end, when her memory deserted her and she no longer knew me, I saw that as the squaring of the circle and it was my turn to look after her and be there for her in her time of need. I was holding her hand when she passed and, sad though it was and still remains, that is one of my most precious memories.
I'm sorry to hear both about your grandma's dementia and also your own feelings of hurt. If it helps I can relate my own experience of something, not exactly the same, bet very similar. My mother suffered a severe stroke aged 71 and was hospitalised (Mount Vernon as was) for almost 9 years before her passing. The stroke affected, among other things, her memory. Similar to your experience I found that I wasn't recognised. Sometimes I would be her brother and at other times one of her nephews, despite my insistence I was her son. Yes it was a shock and also hurtful and annoying. But I kept going as there was, to me, a sense of duty if nothing else. Eventually the visits became easier and I began to see some recognition and understanding - very rarely, but when the recognition was there it gave a sense of relief that somewhere inside, my mother had a light that, however briefly, did flicker from time to time. Looking back I believe that I made a transition from seeing my mother as she had been and saw her as she was at the time after a stroke - and accepted that fact. It became easier as time went on and I would just sit and talk about my, and my family's, day regardless of who my mother thought I was that evening. Not visiting was never a consideration and yes, it would have been a burden of guilt if I had not made those visits. I sincerely hope you find the right way, for you, to deal with this sad situation.
Mi Dad had it for 5 yrs before he died. the professional staff told us to talk enthusiastically about whatever he wanted to..as someone said earlier ya won't upset her...if ya try to have a normal conversation ya end up hurting yourself..Dad flew pigeons and used to tell me about other fanciers coming to his allotment the day before and I used to ask what they thought of his loft,stock and set up then listen while he recounted their conversation...sadly he'd bin in the home for 4 or 5 years...good luck mate, mi heart goes out to you and yours, just do ya best..
I can't imagine what it's like mate, and I really hope I never have to. Can't advise you on anything other than just cherish the good memories you have made. All my love to you and yours. X
I haven't had much experience but mate is going through it with his dad - he's finding it hard going. My first encounter was when I was a kid - we used to live next door to Paul Cross's grandparents - his grandma had it - couple had been maried for 50 years and he walked in one day after being in the garden - his wife phoned the police because she didn't recognise him and thought he was breaking in! Heartbreaking to see
I work in a care home, and at least half of our residents are living with dementia. It's a horrible disease which affects everyone differently. I can't begin to imagine what you're going through, and having seen what it does to people first hand, you need to do what is right for you. If you stop visiting, you might feel guilty, but your final memories of your Grandma may be tainted by the torment she is currently suffering if you keep pushing yourself to visit. Some people do find it too difficult to visit their loved ones who suffer from dementia. I think I would. There is absolutely no shame in that. On the other hand, you could try and embrace it so to speak. Go along with what she is saying. Play the part of the maintenance man or physio. It might give her more comfort if you do, rather than confusing her more by trying to make her remember who you are. We have some remarkably strong people visit our home, who have effectively grieved the loss of who their parents/grandparents were, and essentially try and help them live the rest of their lives in as much comfort as possible. I can assure you though, that she will no doubt be looked after by a team of people who have her best interests at heart, every single day. Despite working long hours, and being significantly under paid, they'll ensure she gets the care and support she needs to live her final years as comfortably as possible.
I'm a mental health nurse and have worked with people experiencing dementia, it is the worst group of diseases there is in my opinion. You do what is right for you, and look after yourself. I'm sure your grandma wouldn't want you to be upset. She is still in there though, she just finds it harder. This is incredible and something we were shown when training: I've had my little moments in the past with patients, too. It is heartbreaking for families to go through though. Please don't feel guilty.
@TitusMagee every admiration for you mate. I'd struggle to do what you do - profession under valued , under funded and overworked!
Find something to do where they can enjoy the moment. Did this with my granny and my friend and his family do the same with their Dad. Some nice food, music, trips to the park etc. He has no idea who they are, but he enjoys the occasion.
I'd say its up to you. No need to feel guilty if you decide its too much for you.. With my Grandma, I felt there was still the essence of the woman who I remembered as a child despite not knowing me. She was always very hospitable and still.was in her nursing home, offering for us to stay overnight etc( even if she was gesturing at the cupboard)
What a ******* illness it is. Does your visits perk her up? If so I would keep going even if she doesn't know who you and the rest of you are. Even if she can't put a name to the face if you keep visiting it will make a difference to her. If she's chatty, smiley etc and not upset and scared for not recognising you. My mum worked in a old folks home and had dementia residents. It sticks out to me what she told me where one guy came to see his mum and mentioned he didn't know if it was worth it as she didn't know who he was. My mum pointed out that while that was the case, whenever he turned up she would smile at him, so it was worth the visits.
You have my sympathy mate, the last few times I saw my mum she didn't know me, just kept looking at me as if thinking "who the hell is this bloke?". Keep going, try to engage with her and talk about shared experiences, the older the better.
I now work in the social care sector, albeit not as a carer. We had a sort of conference day a couple of weeks ago with a guest speaker, Big Ian. A lot of the things he said made sense and he has been through similar situations to you that has led him to try and improve care for people with dementia. His website is worth a browse https://bigian.co.uk/
Purposely not read the replies to this, so I can be objective and not be swayed. My father suffered a stroke just over 10 years ago and it left him paralysed on one side, and the initial thinking was all centred on getting him 'feeling' that side again, through rehab. I was there every day, at Mount Vernon with him, and it took me just a week to realise it had done more damage to him than that. It had blown out his memories and ability to recall stuff. It's hard to explain to anyone who hasn't been through it and I wouldn't wish it on my worst enemy. I don't have any enemies. But you get the point. For the first few weeks he knew exactly who I was, and we'd often speak about my childhood and he'd reference crazy stuff from way back. All this while watching my hero bed-bound, unable to move on his own accord. Horrific. And gradually, daily, as I visited him in between work, he'd say the odd thing that had me thinking "what the ****?" I'd split up with my partner a few weeks prior to his stroke. He knew all about it. We'd been to the Ship Inn, Elsecar on a Friday night and sunk a few ales in my despair. A week later, he'd arranged a weekend away for us in Whitby. His way of getting me to forget and move on from Joanne. A month after his stroke, every day that I visited him, he'd ask me within a few minutes "how's Joanne, she at home?" And it used to ******* break me. My dad was never, ever even the slightest bit 'the same' bloke I grew up with and the rest of his time on this Earth was proper painful to live through, other than having the knowledge that it was him, he looked like him, it was him. It wasn't really. Not dementia, but something that nailed his brain so much that he became completely oblivious to the present. It destroyed me. The worst thing that's ever happened in my life. I lost the greatest person I knew in what I can only describe as the worst fashion possible. Genuinely. I'd rather he died in his sleep. Having to see him disintegrate like he did was torture. The only positive from all that was the perspective it offered me as a human being. Experiences like that mould you. It's certainly helped me to look at life in a different manner. I don't stress, worry or deliberate much anymore. I just crack on. Because it can, and probably will all disappear in the blink of an eye. Not much help, I know. But I feel your pain.
Similar situations here mate. My dad had vascular dementia after a stroke. My stepfather has Alzheimer’s dementia. I found this place helps. http://biads.org.uk/
