Visiting mum (57) in a care home and sh***g it

[tomissmymum]

I haven’t been home in about two months . My mum has early onset dementia, she’s 57 tomorrow . She’s not well at all, she won’t recognise me or interact much with me . I haven’t seen her since July .

I need to see her but I’m terrified . I’m on a three hour coach journey, and I keep dissociating which gets me into a stupid anxiety feedback loop . Horrible mix of agoraphobia and claustrophobia .

I’m going with family, not alone, but I’m so scared .

Bloody hell, OP, you're going through something incredibly hard. Sending you a lot of love. Please please take care of yourself

I don't say it lightly but I honestly think that posting a comment like this, on a post where OP has so eloquently expressed her distress and heartbreak, is evil. You are a despicable person and should be ashamed of yourself.

OP I echo what others have said and send you my thoughts and sympathy.

I don’t think “ uncomfortable” adequately describes the heart wrenching grief of seeing your 57 year old changed beyond all recognition, the stress this brings knowing that you can’t ( ever) make this better. I hope you never have to experience this with someone you love.

OP, remember your mum as you knew her, remember the funny times and the happy times. Look after yourself 💐

So sorry OP, how heartbreaking for you. Well done for being so brave and going though Xxx

My Mother was in a Care Home for 10 years before she died of dementia. I used to go every few weeks, because it was not far from where I lived, but mainly because I wanted the staff to make sure they knew she had family around etc. It was not particularly nice. I just used to show her pictures, and read the letters (the same ones each time). In the early days, I could take her around the garden, but this declined as she deteriorated.
I once met my sister there, who was so much better than me.
Obviously, as she got worse, I could not really hold a conversation, so just talked to her about what I had been doing; what the DC had been doing (I did not expect them to come with me).

My Gran had dementia and I made the decision to stop visiting her as it was upsetting to see someone I loved dearly decline quite quickly. Another part of the decision was to preserve the wonderful memories of my time with her when I was growing up instead of the person who didn't recognise me when I visited. I still think of her every day and I'm sad she didn't get to meet my children as they would have love her and she them. Unfortunately Op you may have to make a very difficult choice. You have my sympathy and do what is best for you and your family.

My mum and Nan here. And my uncle just diagnosed. I sat by my mums bed as she was dying thinking you wouldn't leave a dog like this, there was no recovery but yet she still had to suffer until it ended? So wrong

Sympathies, OP. Do you take her something she likes, e.g. sweets or chocolate? Though TBH it could be easier if she no longer recognises you. Before my DM stopped recognising me it would start with, ‘Have you come to take me home?’ moving on to endless, ‘Get me out of here!’

TBH there were times when I chickened out of visiting (usually once a week) it was just so stressful - my stomach would be in knots.
It was a lovely and very well run home, specifically for dementia, and there was no way on earth she could ever have gone home - already 89 and with fairly well advanced dementia when she went in - just not safe to be left alone at all any more.
I always found visits easier if dh or anyone else was with me, but that didn’t happen very often.
Once she stopped recognising me I was just ‘a nice lady’ who brought her chocolate and made her cups of tea. But eventually there was no conversation at all any more.

@tomissmymum huge hugs it's is such a vile illness Having watched my papa's decline my father said if he ever became like that never feel we had to visit and to give him the blue pill if there was one. Sadly my dad did take another version of dementia in his late 50s and was in an nursing home within a couple of years. I did visit there was lovely moments where he had reverted to being a child but I knew the stories so I could roll with it in a way wife 2 couldnt as it was our history not hers. While he was able i would visit and we would just share sweeties. Then as others have said I would just tell him of my week. It did get harder and he was gone by age 65. His siblings and my children(teenagers) refused to see him and I completely understand. Please do what is best for you xxx

Sweetheart, don't punish yourself. Your dear Mum wouldn't want you to be breaking your heart over this. It's a cruel disease, and we, as a society, need to get better at dealing with it, including making the tough decisions.

Oh OP I am so sad for you. If your mum is only 57 you must be quite young, and that’s hard.
I’m so sorry , and as many have said it’s ok for you to decide how you go from here.

Oh OP sending you a virtual handhold. My mum died last month and the last few weeks were incredibly tough. I can't imagine what it would be like if she hadn't known us on top of everything else.

@CovertImage what a disgustingly glib thing to say to someone who is obviously distressed. I hope that made you feel superior.

Op, my mum died with dementia xmas eve morning last year. She was 65. I'd stopped going to see her when she didn't know who I was as well. She was in a care home too.

I did go and see her a week before she died and whilst she was barely a person I recognised any more I'm so glad I did.

Dementia is so incredibly cruel. You need to think about you too.
Your mum doesn't know you now, if you can't visit then don't feel bad.

Big hugs, op. What a difficult situation.

You have my sympathy. I've worked with dementia clients and their families. Lean in to any community workshops/support groups. Art therapy/music group are super - can you access? I worked with a lady who could not remember every day but we could talk about her childhood, pets etc. Talking is powerful. You don't need the now, the memories whatever the era. Am so sorry you are dealing with this.

I hope your okay OP. I think unless you experienced dementia then people have no idea how traumatic it is for the family members.

When it was me I just wanted to be told it's okay, your allowed to be upset, your allowed to feel hurt and your allowed to not go again. It doesn't mean you love them any less and it's okay to not want to put yourself through that.

If I ever get dementia I don't want my children to visit me, I want them to remember me healthy and well and to carry in with their lives and not be upset and out through emotional rollercoaster to visit me.

Well done for going. It's so hard. DF has dementia. We live in a small village so I don't have the travel issues you have. I probably go once a month/ 6weeks. If I take the kids he will open his eyes and engage but if it's just me he lies in bed with his eyes shut and ignores me. I go because I don't want to be judged by other people for not caring. Neither he nor I get any enjoyment or comfort from my visits. Infact he gets massively distressed if staff tell him I'm his daughter because he cannot remember me as any kind of relation. He copes better if he just thinks we're the kind people from the village but he's a bit confused as to why relative strangers would invade his room!

OP i just want to say how brave you are and how I bet your mum would have been really proud of you for finding the courage to go and see her today. You don't have to go through this again and as a mother i can honestly say i would want my girl to remember me for who i was. Maybe even write a letter to her as you remember her and keep it somewhere special or put it in a special box and make some photo albums and do it with your sister as your own way of remembering her. Maybe make a meal your mum used to make surround yourself with family and friends. but if you choose to visit again things that could be lovely are taking some of the music you know she loved. Maybe bringing hand oils with scents you know she liked and perfumes and nail varnishes and giving her a little pamper. Just a few ideas if you do choose to go again.
Please look after yourself. Make the time to treat yourself because life is too short and I'm sure your mum would want you to look after yourself too. I'm sorry your going through this.

Oh lovely, I so feel for you and hope you are ok after such a hard day. Awfully hard I’m sure. I’m in the early stages of dealing with this - 46 year old sister with early onset progressing at a horrific speed. I think, take each day as it comes. You did today. Brave, but awful for you. But, now you’ve done that , maybe you’d do it again before she dies as it can’t be more of a shock really. Or, if she doesn’t know you at all, and you don’t visit again because it’ll distress you too much, that’s ok. You don’t need a plan today xx

Thank you, spent the evening with family . Very tearful but we all sat together and chatted things through a bit .

Its definitely not easy at all and uncomfortable doesn’t come into it . It’s the hardest thing I’ve ever done in my life . I’ve worked in HDU, taken ICU step downs, seen adults with horrendous brain injuries but when it’s your mother it is hell . I’ve never done something so scary in my entire life . She has no idea who I am or even who she is . No real communication left . No eye contact, no non verbal communication . Occasionally she says something that indicates she is remembering something but that’s getting less and less . If I could I’d never leave her side again but I was so, so overwhelmed I thought if I didn’t get out I was going to end up on the floor . I suspect I’m going to end up having nightmares tonight .

I’ve agreed with family I won’t say never again, if things settle than maybe I will go and visit again, but not tomorrow unless she’s having a remarkably good day - they’ll ring and tell us if that’s the case .

The nurses and senior charge nurse said no judgement from them at all, they said it’s a very cruel form she’s got (pick’s disease plus added complications) . It’s just shit .

Picks disease is a total bastard, poor mum and poor you and family. Much sympathy to you all.

Sending you love and support.
My dad died with vascular dementia, he knew us until the end but he was a different person entirely. He was indifferent how often we visited so we ended up going once a week, which was so sad but all my mother could cope with, after a 50 year marriage.
You need to look after yourself. People commenting nastily on this thread are irrelevant in every way, ignore these sad bitter losers who are very brave when anonymous.
In time you'll remember all the good times with your mother and not the sad way her life is ending. My utmost sympathy to you.

My father who I hadn't seen for many years parents divorced so complicated was dying my brother rang said go see him. He was dying rattle etc I walked in looked at him was so shocked said out loud that's not my daddy and fled. Thankfully my son had taken me I was in no state to drive. I'm sorry @tomissmymum