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 .

You absolutely don't have to go again unless you really want to.

As upsetting as it is, when you look back you will be happier knowing you went to see her. My DM was in a home for the last 6 years of her life. She had for most of her adult life mental health problems, Parkinsons and was in a wheelchair. My DF had to go into hospital for a heart operation and would only have the operation if I promised to visit her regularly, her care home was literally a 2 minute walk from where I worked. Although there wasn’t a lot of conversation I will always look back on that alone time I had with her, I took her out in her wheelchair most days and even took her to a pub for a G&T.

It doesn't look easy to me.

For the moment, be proud that you went to visit. You did your duty. With the passing of the Queen, we are reminded of 'duty'. You have enacted that in your way.
It won't matter what was said, how she behaved: You were there.
Going again is another question. Not going will not be a sign of weakness in you. It will be a choice.

I feel like offering my condolence because the woman you knew has already died. That is what many of us have thought about our loved ones. My loss was my younger sister who went before our parents.

57 how awful 🙁, big hugs OP.

@tomissmymum you have coped so well, given the very difficult circumstances. I think you are right to keep your options open as in 'never say never'. But do only what you are mentally and emotionally able to deal with and try not to feel guilty. Dementia is a bastard.

Thank you . Slept a bit last night . Had a cry this morning . Her hands and head are all bruisey from where she’s hurting herself and it looks like she’s been getting injections of meds too . It’s horrible.

I went in again today, ever so slightly easier . Got a hug and a kiss again . The nurses are so lovely with her and with me too . They said to call day and night . And family will carry on going in every 2-3 days to see her . Have to cling to the positives if there are any . Thanks so much for all the lovely support in here, I read them all back on the train home today - thanks so much .

I'm sorry OP. I don't think most people realise the toll this takes on family members. Developing it this young is a double blow.

I never went to visit my DM unless my DF asked me to.

I'm really pleased that it was a little easier this time @tomissmymum. It can take time to adjust.

My mum has dementia (she is 89 though). I'm used to seeing her all the time and, although it can be very stressful when she's having a bad day, I know what to expect. When my brother and his family travelled across to see her earlier in the year, it was such a shock for them because she had deteriorated so much.

I had to stop visiting my mother in the last six months of her life ( vascular dementia after a stroke, in her nineties). She would try to hit me with her stick, she went purple with rage , it was awful. It wasn’t just distressing for me but it must have been for her, too.

I visited the home or called every week so they knew she wasn’t abandoned.

I think she was angry because I had gone to the GP with her and she had made her wishes clear about treatment and resuscitation , she had a proper form from him. When she had the stroke I gave it to the doctors in ER, they said ‘ oh we don’t take any notice of that!’. So she lived for eight months unable to speak or walk.

I really sympathise with your situation, no one who hasn’t been through this knows what it is like. I hope you can find some peace for yourself.

Hello Tomissmymum,
I hope this isn’t inappropriate but I wonder if your mum is in the same care home as my mum as there is a lady there that fits your description. My mum is very elderly, so while still an awful situation, no where as near as sad as yours. If the home starts with C in a place beginning with T I’m very happy to keep in contact with you. I’m there quite often. Take care.

My heart goes out to you, OP. You are so brave to go today.

I would never pressure you or guilt you into going, but i do think you have made the right call to ‘never say never’. I think that would be an incredibly difficult thing for you to take off the table completely, and maybe there is some support you can seek to help make it easier for you? You may regret it in the future if you never go again.

My much loved grandmother died a couple of years ago and i sat with her while she was dying. Although it was so painful at the time, I actually look back on the time we spent together in those weeks as a real privilege as the pain has faded. You may find that you feel the same in time.

i wish you and your mother peace. Look after yourself OP. 💐

Thank you so so much , that’s so kind of you . It isn’t the same home unfortunately . Though I’m happy to keep in touch anyway !!

Mum is by far the youngest in hers (and been told one of the youngest if not youngest in the entire shire) . You get such a shock going into the unit as everyone else is really very elderly indeed .

If you were mine I wouldnt want you to visit again. I would hate to think that my DS was this upset.

What I would want you to do is remember me but have the most incredible life you possibly can.

I'm so sorry.

I think that’s what family are leaning towards too . Certainly family have decided my younger sister (additional needs) is not visiting unless she expresses a desire to do so, and even then they’d strongly encourage her not to visit at all - said better to remember people as they were before .

Its hellish . I keep remembering them saying this can go on for a good 10 years and then thinking of my lovely mum and thinking, ten years, of that? Of not even knowing what you want for your breakfast or recognising your own name sometimes? No no no .

Them being doctors . The first thing I asked her GP was ‘how long?’ and GP said average is 4-6 years or something, mum is 6 years from onset I think .

Nurses are saying she continues to be very unsettled, anxious and agitated . They’re giving her a lot of sedation but nothing seems to work to calm her down . Even talking, or touch wouldn’t reassure as she wouldn’t understand what you were doing or why . It is an absolutely horrendous, hideous disease .

GP has given me zopiclone to see if that gives me some respite at night, but that’s left my head so foggy/drowsy it’s unreal .

Handhold OP.

My mum is also in a care home. She doesn't have dementia so she does recognise me but she's often very distressed. She's had multiple strokes so can't walk, is pretty much bedridden and can't communicate properly. I dread every visit because she can be abusive. I often feel like my visiting disturbs her really.

I've given my children express permission to NOT visit me in my care home if I ever get like that. It's so hard.

I'm so sorry for what your Mum, and you and your family are going through.

I just wanted to echo everyone else about going easy on yourself, there is no right or wrong here. Just whatever gets you through.

Will your body adjust to the zopiclone? I don't know it but I've taken painkillers before that would absolutely wipe me out at the start but then I would adjust and be able to function on them.

Think about talk therapy for yourself as well. Even if you just cry at them once a week it is very helpful to get everything out to someone who isn't also broken hearted.

Mind yourself **

That’s what I felt seeing mum the second time, that my voice was distressing her more - don’t know if it would have maybe been that I sounded vaguely familiar to her but she wouldn’t have been able to pin it down or something.

It’s horrendous, she has zero quality of life . The nurse today said they had thought it might be medication causing it, but they’ve changed her meds, and she’s still exactly the same if not worse - it’s so hard to know what to do to help . They’re hoping she’s going to get some sleep, she must be exhausted .

Thank you, I think/hope it will yes . I’ve been feeling rotten, jarred my neck so it’s a bit of a combination of things ! They’ve said with the zopiclone to just take one as needed rather than regularly so will see how that goes .

I did ask GP re therapy, she was of opinion that regular therapy via NHS probably won’t make much difference, certainly mental health team won’t take the referral as low risk . She said something re she didn’t think there’s a person alive who would not find this distressing, and said the only way through it is time, self care, routine etc . I have got a lot of support through my uni and family. It’s just sometimes find myself completely overwhelmed with it all and hard to even consider getting out of bed sometimes .

My DM doesn't know me any more. She is bedridden in a home and very frail.

My lovely, funny DM "went" a while ago and now I visit the shell of her. I try and talk and I hold her hand.

It's another phase in your life together, I completely understand 💐

OK I have a different point of view. Part of visiting the care home is to check your relative is cared for. I have a very severely disabled son. I visit partly to bring him some joy but also to check on his care. The fact that I visit helps keep him safe. He spent a significant amount of time in a psychiatric hospital. Me visiting helped to keep him clean and safe. It was hell. I used to leave trying to hold back tears and I used to park up and sob. However I do not regret it.