Mum has confirmed dementia - she’s only 56

[tomissmymum]

Feel like my entire floor has fallen out from under me . She’s only 56 .

They said it’s conclusive from her scans . They don’t know how long she has left if it’s months or years .

She will only continue to deteriorate though, that is certain .

I’m sitting on bathroom floor not knowing what to do or where to go or who to talk to . I haven’t got anyone near me that I can go and see .

Her GP surgery said her GP is going to try to ring me before she goes home for the night .

My family were saying to ring NHS24 to ask for a sleeping tablet or something .

I don’t know what to do .

Hope you get some sleep OP. I hope you can feel the sympathy and support here.
My own mum had a period of extreme sadness, paranoia, delusions hallucinations and even went walkabout a few times when she was 57/8..thereabouts anyway. No one concluded anything really but she was put on anti-psychotics, anti depressants.... Things got no better really then slowly at first then horrifically rapidly at the end she started a decline into dementia She was eventually diagnosed but not for a few years.
Your saying how much you would give to just go for a walk with her rings so, so true. For me, it would be just to sit again on a bench in the garden with her, which was the last time I remember her being content. I held her hand and she looked out across the garden and just said 'It'll be alright'. She didn't recognise anyone by then, but sometimes referred to me as 'that nice lady' so I take some comfort in that.
It is the cruellest disease.
💐

I'm sorry your mum has been diagnosed with FTD, but from your previous threads it is great that you now know what is happening and that your mum is safely cared for and you no longer have to be responsible for her.
My mum had FTD and it was so insidious. And things that people said those with dementia liked, my mum had no interest in. Photos just distressed her as she couldn't make sense of them and she hated music (when she had loved it before). The phone distressed her from early on as she had no non verbal cues to help her pick words (out of what she had left) appropriately, though in person she could put on an act for a long time to look like she knew who people were if someone came smiling towards her. She never understood that she had dementia.
We did still have good times even deep into her dementia, but I had to accept that she was living in her world and to go with it. The Elderly Parents board here was amazing

This is what’s happening with mum, she doesn’t like photos as she can’t look at them and say oh there’s ‘x’ when she was little, or
something - they don’t mean anything to her anymore . Even photos of us as a family . She coped a little bit more with VHS tapes of us but even then mostly didn’t react - she spends a lot of time staring into space .

She’s going into a specialist dementia unit on next week . She’s been sectioned so she can’t leave for safety, as she was trying to .

my aunty rang yesterday and said that she is almost wanting it to be quick, mum is in distress a lot of the time and frightened and as much as she’s on heavy medication to try and help with that we can’t reason with her to make her feel better . I don’t want her to suffer the loss of dignity that’s inevitably coming too, although I know everyone will try to be as kind as possible mum would have hated the thought of it . I think I want it to be quick too, unless mum settles remarkably well in new unit she has very little quality of life now .

Im not phoning her every day and family are saying no need to visit too frequently, my aunty said it’s not going to help sitting watching her slowly declining, she said I can visit but don’t need to be there every weekend, I don’t know if I’ll regret that in years to come. She said mum wouldn’t know who is sitting beside her, she has asked for me once by name but settled when they told her I was at uni, I don’t know . Feel completely torn and keep going between wondering if it’s a stupid dream I’m having or just wanting to sit and cry . It’s hell .

My MIL died recently. She had dementia for ten years, and for the last three hadn't known that she even knew us when we visited. Never mind who we were. In fact for my last couple of visits she didn't seem to realise that anyone was sat with her at all, never mind who they were. I'd hold her hand and stroke her arm but she just stared into space.

So your auntie is probably right that there is no point in your visits from your mums point of view, nor should you feel guilty for not visiting every week.

On the other hand, while I might be wrong, I get the feeling that your aunts and uncles are somewhat taking over and telling you what you should do. If you disagree with anything they're doing, I hope you feel strong enough to speak up. If they're simply supporting you, that's brilliant. But if you, who've cared for your mum for so long, are being sidelined, do speak up, and ensure that the home/hospital knows that YOU are her next of kin.

Phone calls really did distress mum as I think it was like someone calling up and speaking latin to you - like the odd word might make sense and you feel like you should understand, but you can't. She wasn't bothered about people visiting at all - again, they didn't make any sense to her, but I'd send her cards with nice pictures on and it made me feel better and her carer had something to talk to her about.
The strict routine in a dementia unit may well settle her down. Mum loved routine and doing things exactly the same way, even down to food (she had the same lunch for 5 years).
You'll be able to call the home she's in, and a daily call to find out how she is, if she needs anything will be fine. Then decide how often you want to visit, and what is sustainable for you (you need a break and have to look after yourself), but as there are a few family members around, maybe by the time everyone takes a turn it will be once ever 2 months considering the distance. I didn't see my parents that often in their last years, but I don't regret it, as it wasn't my mum I was seeing

So mum got moved to a nursing home a few days ago, she’s further deteriorated - speech, mobility and stuff all going . I don’t think she’ll be ill for long . Been to visit her once and struggled immensely after, I miss her desperately.

Please be very kind to yourself, please find support to help you cope with the emotional fall out. It's horrific for you so I'm not surprised your grief is overwhelming.

I'm so sorry. I posted on the wrong thread. I've reported it. 💐

Long time lurker on mumsnet, have just decided to comment for the first time as I have been where you are. My mum was diagnosed (finally) at aged 51, I was 21. It’s been a long road since then, we are now 7 years in and unfortunately she was sectioned a month before my wedding, 3 years ago. Hasn’t been able to hold either of my babies. It makes me incredibly sad and Only someone in the same position understands when you say you want it to be over. My mum cannot talk or weight bear any longer and I know, she would have been first to say she didn’t want it to come to this.
sending you lots of wishes for you. I think it’s harder on the family when it gets to this point as they don’t know what’s happening to them. Take care of yourself, don’t visit if you don’t want to, visit if you do. Still take the photos, I do for my kids, it’s all I’ll ever have of them with their granny. And sort out the legal side 💐

So sorry. Just to be warn you it’s very common for residents to deteriorate in a nursing home. I know my mum did, we were very upset.
I don’t think she did really deteriorate, but it made us realise how much we were unconsciously doing to cover up the dementia. Once we weren’t around all the time the decline was left very exposed.
I didn’t visit for a week after mum went into the hime. But went more regularly after that. It became part of my routine. But do whatever you need to. There is no obligation, your mum is well looked after. You’ve done all you can.

"I got angry at her when she made mistakes sometimes, I shouted at her once a few weeks ago when she had changed pyjamas 12 times in one hour, what kind of horrible person would shout at someone with dementia"

Some like me that's who, well, I got a bit short with dad occasionally which yeah I know is stupid and unfair but sometimes, when you're trying to get their dinner and answer the phone and you're tired and they were up 14 times the night before to go to the loo (about 6 times actually needing the loo the rest false alarms but you still have to get them to the loo to be sure, yay) and you've been asked the same question 23 times in half an hour and you're tired and you miss your lovely daddy the way he was and he's never coming back....yeah...sometimes you snap a bit. Mum did the vast bulk of the caring and my sister and I were supporting cast and mum sometimes used to get snappy with him too. We had each other to confess to so it must be so tough for you alone. At least you can apologise anyway, fortunately dad seemed not to remember when we had just been arsey with him 15 minutes earlier cos we were patient most of the time.

I used to walk by myself a lot, get off the path in the forest or up round the back fields and walk and cry if I felt like it, or drive somewhere at lunchtime , buy a sandwich and a drink on the way, park up somewhere quiet, wallow in misery and fear of the future for half an hour, calm down in time to eat the sandwich , get a breath of fresh air and let things the bloodshot blotchiness disappear before I had to be back in work.

The elderly parents board here helped me a lot. Hi CMOTDibbler by the way, I remember you from that board, you said lots of kind things, even the stuff you were saying to other people in that board helped me a lot at that time.

Hi OP
So sorry you are going through this. My Dad got diagnosed with FTD at 64 just over 2 years ago , he went from living on his own to being sectioned in hospital to a care home to a nursing home now. He is relatively settled and content, although very restless. I was pregnant at the time , DS is now 2 , me and my sister cried a lot, I think the first year is the hardest, coming to terms with it and you begin grieving long before they have gone . Definitely get power of attorney NOW for Health and finance , it is two separate things, people forget to get it for health but it means you have the ultimate say in decisions and no doubt she will have episodes in hospital for various physical ailments as she deteriorates. Also in the later stages you may want to put a DNR in place. We have done this for our dad. Cry as much as you need to. Get therapy to talk it through and give you your own space to vent. Visit as much or as little as YOU need to, it sounds selfish but you need to find a way to survive this part, visiting her more is not going to change her situation, but you visiting less may help you to cope with it and that's perfectly ok. I've had to do that with juggling my toddler and it's hard. Feeling for you and hope you find on this thread that you are certainly not alone in this situation. FTD is a very different dementia to Alzheimer's and people don't understand it as it's more rare, this presents a challenge in itself as it's very difficult to explain to people what it's like. You will find a way to get through this and there will come a time when you can talk about it without crying.

"I keep going over and over and over the last few years in my head and thinking I should have done this, that and the next thing and we missed opportunities to do things together and now we never will again, I had severe MH problems a couple of years ago (largely due to all of this) and we didn’t go for walks as much as we could have . Now I’d give anything to go for a walk with mum as she was before ."

I should've probably gone home more often, when mum first started saying occasionally , "I'm worried about your dad's memory" (not obvious to me- he seemed normal on the fleeting weekends I was home). Then when we were caring for him, well I used to take him for walks round the farm, and then he "froze" and got frightened climbing over a gate. So we avoided the places where you had to climb fences or gates and he never again saw the back wood that he planted. Then he started getting a bit stumbly and unsure on rough ground, so we stuck to the road and he never walked round his fields again. Then he tripped on the road and fell, and it was a bit hairy getting him up again, so we just walked slowly up the lane and back, and he never again walked the roads that he had walked and driven for 60 years. Then he went into a nursing home and he did come home for Sunday lunch sometimes, but he never went up the stairs in his own house again and stood in his own bedroom looking out of the big bay windows over the beautiful garden he fenced and sculpted out of what had been part of a rough field 40 years before. I used to take him for little walks/shuffles in the tiny flat garden in the nursing home, then he went off his legs and that was that for walking. Each time I didn't know it was the last time. You snatch the odd quite nice moment here and there, but you can't magically live each day as if it's the last and drink in the marvellousness to the fullest and have both of you in a beautiful zen mood of gratitude and harmony all the time because life isn't like that and you're just getting on with it, and you're just trying to get on and do what you can and go to work and pay your rent and ring the boilerman and remember to put the bin out, and maybe fit a short kinda crap walk in and get them back in the door before it starts pishing rain again anyway. It's ok. It wasn't perfect. But it was OK. You did OK.

Each time I didn't know it was the last time. You snatch the odd quite nice moment here and there, but you can't magically live each day as if it's the last and drink in the marvellousness to the fullest and have both of you in a beautiful zen mood of gratitude and harmony all the time because life isn't like that and you're just getting on with it, and you're just trying to get on and do what you can and go to work and pay your rent and ring the boilerman and remember to put the bin out, and maybe fit a short kinda crap walk in and get them back in the door before it starts pishing rain again anyway. It's ok. It wasn't perfect. But it was OK. You did OK.

THIS very well put couldn't have put it better myself

❤❤❤

Dementia sucks the life out the people who have it and the family around them. It's mind crushing and soul destroying and there's not a single thing I can tell you to make you feel better and sleep better tonight.
Your mother won't be around for much longer but you will be left behind with the memories, the good and the bad. Hold on to the good ones and get help for the bad ones. Get professional help if need be, don't be shy.
Start dealing with the practical things, get legal advice, get a nursing home. You sound very young, you're going to want to keep her home but I can tell you from unfortunate personal experience, dementia's a terrible terrible illness. It will suck the life out of you and leave lasting marks, and your mother wouldn't want that. Your mother would want you to be happy.
My best advice for you is do not think about keeping her home, dementia is emotionally draining and it's an investment you make you can't take back and there will never be any return, I don't talking about money you can make up for that, but not the emotional investment. It leaves the most terrible marks and your mother wouldn't want that. Remember your mother as she was not has she is, because at some point you're going to realise it's not her anymore. Good luck OP! XX 💐

My mum developed FTD as a result of a head injury she got in a cycling accident that happened when she was on a cycling holiday in India when she was 66 (so had obviously been really fit and healthy). Essentially the healing process didn't stop and because destructive . She was diagnosed at 69 .

The early forms are usually "rapid onset", which is actually a saving grace. She went into a home not long after her 70th birthday and died shortly before her 72nd birthday.

Every dementia is different. In mum's case, she never forgot who we were, nor did she lose her memories - although laterally I got the impression that she couldn't be bothered remember. What she did lose was her language skills (she'd been an English teacher) and her love of music, which no longer meant anything to her (so it annoys me when some people say you can "always" reach dementia sufferers with music ). Towards the end she could barely talk and she also lost the ability to balance or walk (but couldn't recognise this, so would try to get out of bed or her chair )

I wouldn't wish it on my worst enemy. I visited her regularly - 2 or 3 times a week, as did my dad and many of her friends. We made sure she had at least one visitor a day.

Dh could always tell when she'd been "better" when I visited as I'd come home more upset, having had a glimpse of the wonderful vibrant woman she'd been .

She hated it in the home, even though it was a good and caring place. My dad never stopped loving her but knew he couldn't cope with her at home.

Towards the end, I commented to my dad why we were bullying her to eat: it was the one thing she had control over. It meant that every time we visited, we were stressed as we tried to make her eat some yoghurt or grapes or something else high calorie. We stopped doing that and concentrated on mouth care and fluids and she died a few weeks later.

My aunt (my dad's sister) gave me the best boy of advice. Their dad had died of a brain tumour when they were in their early 20s: my dad had to return from Uni where, although he'd got his degree, was going to spend a year as the President of the equivalent of the Student Representative Council, to run the farm). She told me that it would take time - at least 6 months - but that eventually I would be able to remember my mum "properly", as the wonderful vibrant woman she'd been, rather than the husk she'd become at the end. I held on to that bit of advice and it helped - although it took me closer to a year to forget the image and character her during the final year and a half.

It's been 10 years now since she died (16 years since her accident and 13 years since we realised that the progress that she'd made - about a 80% recovery - was going backwards. I can now remember with happiness and know that she helped me become the woman that I am. I still miss her - especially sharing landmark moments like taking ds to Uni and his graduation - but it doesn't hurt so much. But don't beat yourself up if you tear up when talking about her - that's part of your love for her and the memories you share (it's taken dh a long time to come to terms with the fact that it's not that I'm upset - I'm just emotional and that ok).