Choosing the future for Mum - guilt, Xmas and wishing it was over

[Emma1980]

I'm so glad that I joined the forum this morning. My Mum is only just 53 and has a form of dementia, type unknown, although the cerrebelum at back of brain is eroding faster than rest of brain. This year has been hell. Mum had two falls in one day last December and went in to hospital for seven months. So last Christmas she was in hospital with her leg in plaster and arm in a sling. Doctors noticed her behaviour was odd and that she'd get very distressed so they did a brain scan and various other tests such as the Mini Mental State examination. Scores were low and the prognosis wasn't good. Mum was moved to a pshyciatric unit for the last three months of stay and started improving, doing well in physio, walking and doing stairs, although has since declined.

Mum went home in July, to be looked after by her live-in ex partner/friend who is 75 and not in best of health. In Sept we got social services involved and home help going in but it just isn't enough, her behaviour is getting worse, she screams/shouts regularly and can't be left on her own aside from when she goes to bed. Terraced house and the neighbours have had enough, they have young children. I'm 31, an only child, no relatives, and have a full time job, mortgage, imminent step-son, and find it difficult to visit every weekend over night so i can give her carer a break to see his own family. It has sadly come to the point where I think she needs to go into a residential home, paperwork is underway. I feel such utter guilt, like I'm failing my Mum and that in fact I should sacrifice my own life for hers and take over her care. I know I can't do this though and nor do I want to.

I wish every day that I will get a call to say she went to sleep and didn't wake up. I just can't face having to see how upset she'll be going in to a residential home, although I know it would be for the best. I just wish this was over and that I could enjoy my life, I'd be so happy if it were not for all this. I feel as though my Mum has already gone, she started going years ago before we knew it was dementia, and now I'm left with this huge responsibility of choosing my Mum's fate. Mum's still with it enough to know what is going on which makes it even worse. I just wish it was all over and soon.

It helps to read that others are feeling this too and finding Christmas such a hard prospect. I've rented a (detached due to potential Mum screaming) bungalow for four nights over Xmas, it will be just me and her, and I'm dreading it. It's so sad thinking of Christmas's gone by and how she used to be. My boyfriend is going to his folks in Norfolk for Xmas and I so wish I had the freedom to go with him, I can't take Mum there because of how she is. Maybe this will be Mum's last Christmas, who knows, I feel guilty for hoping that it is but I'm also going to try my best to make it good for her.

But every morning when i turn my phone on I hope for a message to say she hasn't woken up, I just can't face the troubles ahead and feel so alone. I often think 'one relative, you'd think I'd be in luck' but no. It isn't Mum's fault but I cannot wait for it all to be over. Sad times indeed.

Emma

 

[jan.s]

Dear Emma,
How my heart goes out to you in this difficult situation. I understand the guilt you feel as my husband went through a period of aggression, which is very unpredictable and very difficult to manage. You have no reason to feel guilt, although I truly do understand how you feel.
In my opinion you are looking at the best possible long term solution for both you and your mum; you have my full admiration for spending Christmas with her, being so totally unselfish.
By putting your mum into an appropriate residential home you are doing your best for her; they are more used to handling the difficult behaviours, and it will give your mum greater stability, once she gets used to the idea. She is probably very frightened as she is not in control of her behaviour, and the professionals will be able to understand and work with you and her. It will also mean that you will be able to spend quality time with her when you visit, not feeling totally stressed.
I too understand how it is to have to make the decisions alone - neiher myself or my husband have family, just some reliable friends.
You are too young to give up your life, and deserve to have some time for yourself. You still have your own life ahead.

Good luck, and let us know how you get on. There is lots of support on here and it really does help you to feel better knowing your decisions are hood choices.

Jan x

 

[Julia58]

Oh Emma my heart goes out to you.
I am in a very similar situation with father who has Dementia but he is at home with mum who is his main carer. My dad too needs to be in full time care.

I have had such brilliant advice and support off here these past few days and may i just say i just wish i could come and give you a hug as so feel for you.

You are so very young at 31 to be going through all this on your own as Jan so rightly says.

I wish you all the luck in the world i really do this Christmas and so understand how you feel regarding your mother passing away. I too have these thoughts daily.

Thinking of you Emma and keep in touch when you can. x
Julia x

 

[nicoise]

Dear Emma,

So sorry to hear your story - your mum is so young to have developed dementia, you are both very unfortunate indeed.

Don't feel guilty about your thoughts - your poor mum needs much more specialised care than you alone are able to give her - even if you did live with her 24/7 I really think it would be beyond you. To give her the best quality of life possible a care home is the only answer - it is not taking the easy way out, it is doing the best for her.

So this Christmas away together will probably be your last as things are at present - it will not be easy, but perhaps just use the opportunity to create some memories, hopefully a moment or two of happy ones, or raise a toast to times past.

You will be able to live the life you would like and deserve to, and your mum will get the care she needs from those whose speciality it is. Then you can visit her and spend a bit of simple time with her, without having to worry about her everyday needs.

No-one has a crystal ball to foretell what the future holds, but I do hope that a better arrangement will be made for your mum in the new year, and that life will become easier for you all.

Best wishes

 

[FifiMo]

Emma,

So sorry to read of all your worries concerning your mum. The bottom line is that you don't have to deal with all of this yourself. There comes a point where, no matter how hard we all try, that it is no longer possible or even feasible to continue to provide the level of care that they need on a 24/7 basis within the confines of their own home. I can understand the neighbours too and how frustrating it must be for them and no matter how compassionate they might be to your mum's plight, there comes a point for them also when they need to put their own family first. From what you say, it does sound like it is time to get all the professionals involved and find an approach that deals with all your mum's challenges. First and foremost, I would contact the psychiatrist and tell them it is an emergency situation. In the meantime, I would sit down and get her friend to do the same, and write out a list of all the things that are happening on a day to day basis. Have the list ready to show all the professionals as this gives them a clear insight as to what is going on. In addition, I would consider finding out the phone number of the emergency social worker, and passing it on to your mum's neighbour and encourage them to call when her crying out and screaming is disturbing them. This might sound drastic, but often it is complaints such as these that cause the Authorities to step in and start taking things seriously. With my mother, her GP told us to encourage her to phone the police if someone was stealing from her - he said if the police come in they are duty bound to write a report and send it to me - if i have these reports coming in from independent people then I am duty bound to address them. As you are already finding out, as long as you are able to lurch along as a family then nothing will happen. You will be led to believe that your mum isn't that bad - that its only early onset dementia or whatever. If you think about it, every week they delay, is a week that they don't need to do something and you are left holding the baby. Everyone here on TP will help you through all of this, so you don't have to feel isolated. The support is here for you for as long as you need it.

Can I just say with regards to the bungalow for Christmas...please have a fallback plan in place. You might find that because the place is not familiar to her, that your mum becomes particularly distressed. You might also think that her problems have immediately deteriortated drastically but this could be due to her not being able to cope with being away from her home. I don't know how far away this bungalow is from where she lives, but please make sure you have enough petrol in the car to get her home and short notice, and make sure you have phone numbers etc with you should you need to contact people at short notice. This might sound a bit drastic and I really hope that it is, but from my experience, change in routine, particuarly when it is combined with a change in location too, can be a recipe for disaster. Take some things with you that are familiar to her that you might be able to use to distract her if she becomes agitated etc. If things get really bad, then do not hesitate to either call an ambulance or take her to the nearest A&E.

I hope you don't think i'm being unduly pessimistic here, I am really not trying to be, but am rather trying to make sure that you can plan for the unexpected. I do however hope the unexpected doesn't happen and that you do have a nice time with your mum and that there are periods where you can still see glimpses of the old mum that you know.

Fiona
x

 

[grove]

Hello Emma , Am so sorry to read about you & your Mum it is so sad ( & your Mum under 60 life is not fair is it ? , my heart goes out to you Emma )

Sorry no real advice just want to send much Love , Peace & Comfort to you & your Mum for today & the weeks to come

Take Care

Love & Big Hugs , Love Grove x x

 

[Emma1980]

Thank you for replies

Hello,

Thank you all for taking the time to reply to my musings. It helps more than you could know to hear such reassuring words from people who are experiencing similar things. I rang my Mum and housemate/carer John yesterday evening on the way home from work and spoke to John for a few minutes, I asked if Mum was there as it was very quiet as usually she's shouting his name in the background when he answers the phone. She was eating her dinner so was quiet. Apparently she had slept aside from one call when she told John she had too much moisturiser on her face. This was 1.30am. Anyway, I rang back when off train and spoke to her, she was calm and tried to have normal conversation but kept saying the same thing 'Shall I bring everything?' basically about getting things together for our Xmas break. I replied each time 'Yes, I'll help you get everything together when I get there on Friday'. I'll do my best when away, it's only a few miles from her house and I've taken her on holiday for a week the last three years, last time in October to Yorkshire. So I know what may come, one of my main concerns is if she has an 'accident' in the bed, I'm considering taking her own bedlinen from home and pretending we had to take own linen, she had an accident in Yorkshire but at least there was a washing machine/dryer.

I know that this could be our last Christmas together, even if she is still here next year then she'll be in residential care. I'll do my best but am dreading it. My boyfriend has lent my a laptop and the place has wifi so at least I'll be able to log on here - if my Mum doesn't get he hump as not giving full attention. Hey ho!

Thanks again all, there is a care plan review meeting on 29th Dec that I'm apprehensive about as I don't really want her taken back to hosp until the residential place is sorted. Will keep you posted.

Wishing you all an easy Christmas,

Emma

 

[Emma1980]

How it went

Hello,

I posted this in another Xmas thread but maybe if anyone wonders how my trip away with Mum went, here you are. It's a waffle I'm afraid!

-----

I've just got back home after five days away with my Mum. She has a form of early onset dementia, only 53, and spent last Christmas in hospital, which is when a brain scan revealed degeneration. So I really wanted this to be a special Christmas, and took my camera for that reason. Not a single photo was taken.

It started off well on the Friday evening, and she slept all night. Always gets distressed when washing/dressing and going to loo but I'm used to that. On the Saturday we went out for a walk which was on challenging ground for a wheelchair and then went to the graveyard where my Grampa and Uncle are. It was only the four of us in the old days and it was just awful being there and thinking of Christmas's past. Christmas day came and Mum was edgy, you know on the edge of having a complete wobbly, crying on and off, just distressed, with moments of her being fine. I slaved away to make a nice Xmas dinner for us and she was whimpering at the table, announcing that the fact she had a paper hat (from cracker obv) was why she couldn't eat her dinner properly. She was keeping pace with me, well she put me off so ate more than me. It was awful. I just wanted my Grandad back and for him to tell me what to do. I remembered the happy times, like many of you have said, the marker of 25th Dec means we can compare the changes year on year. The only salvation came at 5pm when Carry On films were shown back to back on ITV3. Mum content 5pm - 1am. She did like her presents though and knew what was going on etc. It's like Jekyl and Hyde - she's there and then this other person turns up who I just wish wasn't here anymore. My old Mum has gone.

Boxing day started off badly with Mum getting out of bed and pooing on the bed and carpet, seeming to stop when I reminded her she should hold until the bathroom. Luckily I had expected this so had put her own bedlinen on bed in case of mishaps and by chance the carpet was brown - phew! Then after a kafuffle getting washed and dressed we went out for what was a lovely day at a lake/gardens where I pushed her wheelchair six or so miles. It was worth it as she enjoyed it so much but seeing all those 'normal' families out for a Boxing Day walk made me sad and feel so jealous. I'm sure many of you feel just the same. I used to have a 'normal' family and look at where I am now, just me and my Mum.

Today, going home day, was variable. The 'what trousers to wear' game began - jeans or trackies - trackies, start pulling them up Mum's legs 'I DON'T WANT THEM ON - WAAAAAAH' she cries 'Well do you want jeans?' 'I don't want them' 'What do you want to wear?' and so in circles we go until I tell her we haven't got time for this as I need to pack and get ready myself. We finally get out and go for a walk in a nearby country park, where my ex boyf is a ranger. He lets us park on the drive as car is laden and Mum has a nice chat with him. I go inside for a couple of minutes, he gives me a big hug and I blubber. It's too much and he's the only other person I've spoken to face to face since Friday. Mum and I go for our walk and have a picnic on a bench then when heading back she suddenly cries 'I'm so cold!' and repeats phrase loudly for the ten min walk back to car. Get in car and she's rocking backwards and forwards saying she's cold and she's going to wet herself. Ex boyfs parents are visiting so I go in to say hello and break down. His Mum goes to say hello to my Mum, sat in car, and soon returns to say my Mum has told her she's about to wet herself. So even though I wanted to stay there and have a cuppa with 'normal' folk I get back in car and start drive back to Mum's. She apologises and says she'll be good when we get home. Get her in and chaos ensues for next two hours. They have a (pretty rundown) townhouse so two stairlifts and just as Mum gets off first one it stops working. I see her to loo then to chair in bedroom and try to fix stairlift, she's moaning, whimpering, thumping chair arm upstairs. Call engineer for stairlift and have to explain countless times to Mum what has happened and when they are coming. Then unpack for her, make bed, hoover bedroom, wash her hair as regular carer off this week, dry hair, bung dinner in microwave, ring care company to find out who is covering care visits, re-tune TV. Mediate between Mum and her ex partner John, who is 75, and back from a lovely Christmas with his family. Skating on thin ice, trying to avoid meltdown. Finally leave after getting last bits of shopping in and feel a mixture of relief, guilt at leaving John to cope and apprehension as there is a meeting on 29th when they will review care plan and most likely recommend a residential home. My Mum is with it enough to kick up a right old stink about that idea but she's so much work and John can't really cope anymore. I work full time and don't want to give up job.

It's odd, my Nan who dies before I was born supposedly had Alzheimers (died at 54), my Uncle had an undiagnosed neurological condition (died at 52) and my Mum now 53 is in the throes of an unknown form of dementia. My Grandad lived until 86 and died of old age, I was much closer to him than Mum, and a few months before he died he said 'If anything ever happens with your Mum, just stick her in a nursing home, don't waste your life looking after her.' I've never forgotten it and now, when it is almost time for that I think it is easier said than done.

This has turned in to an epic ramble, it has helped to write it down, and maybe it will help some of you who see similarities with their own situations. My newish boyf finds it hard to listen to me about all this, so I'm going to try to keep him from it, but it really helps to know there are others here on Talking Point who are here to share our stories and tales of woe!

Right, time for some more 'Cherry Vodka Fizz' courtesy of M&S and trying to forget for a day or so about this horrible, seemingly endless, situation.

 

[princess_bear]

Dear Emma,
I just wanted to say how much I feel for you and understand a little of what you're going through. My mum is 58 and has just been diagnosed with a rare form of Alzheimer's called PCA. I am only 29 and feeling so much guilt at the moment for feeling like I don't ever want to give up my life to care for her. It's such a weird mishmash of emotions right now!

Anyway I send you loads of love and well done for being so brave and getting through Christmas. It's such a difficult time. I have never cried so much in so few days.

Nikki x

 

[MissO]

Thank you

I am newbie on here. I have drunk some wine to give me the nerve to face reading the posts. I am glad i have. I am 25 and my dad has been diagnosed with Dementia at 58. We do not have a good relationship, i am frustrated, scared, angry and sad. I probably have much more feeling going on than that but hey. I am a bit numb.


Thank you Emma. I don't feel so alone tonight, i don't feel so guilty for my thoughts and fears.

- R x

 

[lin1]

Hello Miss0 Welcome to TP
All those feelings you have are normal,
when I first joined tp I found reading others posts of their trials and tribulations actually helped me put things in perspective.
Please feel free to ask questions , we will do our best, this is also a good place to get things off your chest,
Ive found everyone friendly and helpful