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Start of my nightmare

lostwithmum

Registered User
Jul 21, 2013
3
0
I just stumbled across this site - as you do when you are in need. Everyone here seems to be so lovely and understanding and I am in such a stress-filled space right now I need support I don't feel I am getting anywhere.
Let's start at the beginning. Dad died last September (heart attack). Mum was his primary carer for 2 years as he did the old guilt thing even when he couldn't walk "put me in a home and I will die" so Mum felt compelled to keep him at home. She managed. She has always been a bit vague...memory issues for a long time. High blood pressure, not managed well at all. Anyway let's get to three weeks ago. I called her and she sounded slurry and said she thought she'd had a mini stroke. I high tailed it to her place and we went to the hospital...and yes she had a stroke, a major one. yet physically she was not showing signs which surprised them. She went to rehab after a few days yet one day decided to take a walk. Got lost. For 30+ hours on the streets. The police were involved, everything and everyone was involved...my brother went on the news and someone recognised her posted picture, they found her at a factory complex curled up in a doorway. She has no knowledge of any of it. She swears she and I were at a fair with fairy lights in trees and people dressed in costume. Even now, despite it all she still believes that. Anyway she is in high security in the rehab place now. We fought for her to have a TV and phone as in so many ways she is just the same as she ever was. We had a meeting with the Neurologist and others even her and he said she has vascular dementia along with other issues (decision making etc) caused by the stroke. He said we need to find a low key nursing home (she can dress herself etc) but high security so no more wandering off with the option of high care for when it progresses. The thing is she said she is fine, no dementia at all. That she wants to live independently and she will be just fine. No matter what we say or do she will not be convinced there is an issue. And to talk to her you would swear all was fine too. But physically the evidence is there. It is breaking my heart. Mum is my best friend, I love her dearly but she needs to be safe. Also she has had two falls she couldn't get up from, so she is pretty frail too. At nearly 84 it is time for this along with her problems. But she will feel betrayed by us to put her in a home when she is just fine she believes, and won't understand at all. I don't know what to do. She is very much loved but i can't convince her that we weren't at this fair - that she was lost - and that she has dementia. I am sure others have gone through the denial thing too, so any advice as to what to do would be so welcome. Thank you all. This is a hell I wish none of us were living through.
 

FifiMo

Registered User
Feb 10, 2010
4,705
0
Wiltshire
Hiya,

If your mum believes you were all at the fair, then that is her reality and you are unlikely to persuade her otherwise. In these circumstances then I would just agree with her and let her talk about what happened. You might find it is important to her to feel she is being believed. As to the dementia, you can find that no matter how many times you tell her she is not going to believe you or may in fact not remember. It is recommended that you tell the person once and that is all. To be constantly reminded can do more harm than good.

As to going into a home, don't let this become an issue. If necessary, lie through your teeth. Sat it is for convalescence. To help her get her strength back. For many there is such a stigma about going into a home, so if you can lesson the impact then that is what I would do.

You might find this thread useful as it gives tips about how to communicate with someone with memory problems. http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

Hope this helps,

Fiona
 

nerak

Account Closed
Jul 4, 2013
180
0
ireland
Hi you've come to the right place!! I only joined last week and am slightly less stressed as im not alone!!

My mums been acting strange for years but the last 2 has done some very dangerous things am BATTLING with doctors etc..for a diagnosis

She is diabetic and last july had a diabetic seizure as far as ive googled this is vascular dementia my doc says yes its sounds like it.

Its awful she can be fine then do something so dangerous its very worrying.

Im in the same position as you I want her in a home wheres she safe but I havnt had ANY real professional help with all the cuts here its dreaful that my mum has to wait so long for any professional help.

I am very fearful that we may have to force her into a home as shes not safe alone now. I have nightmares every night about this but just want whats best for her.

Of course we cant even mention a home until ive had professional help but its a very hard thing to deal with.

I hope unlike me that you have some support from family you will need every bit of help you can get BUT coming on this site will ease your burden.

I was so stressed I thought I was going to have a heartattack! then came across this site and felt a huge brick had lifted. I thought I was going mad and not my mum!!

We are all here for you and we are all in the same boat a sad place to be but a great place to ask your questions and get good advice! Im sure youre feeling better already!!:)
 

nerak

Account Closed
Jul 4, 2013
180
0
ireland
Sorry you didn't mention if you live with her?? I live with mine and hope that she will lose her memory before we even think of a home but how long will this go on??

I really want my life back and want to move from this county ill only be 2hrs away but could not leave until shes safe.

the sad thing about this is that my mum will refuse to go into a home now I really don't know how shell react when the diagnosis is told to her but knowing my mum she will go into total denial like yours.

I pray that soon she wont know where she is and putting her in a good home will be easier for us? but that's just wishful thinking.

A hateful illness:mad:
 

lostwithmum

Registered User
Jul 21, 2013
3
0
Thank you all for your support. I apologise for not getting back on here sooner. No Mum doesn't live with me, she lives independently, well did in her own home. She was managing okay, the garden and housework was becoming a bit much for her.
I offered to take her in here with locked doors (keyed) of course but everyone has refused to entertain that idea. My brothers and the hospital she is at. I guess she needs some social things that I can't provide. I work full time but from home (typing medical reports). the full time work prevents me going to see her as often as i want, I see her once a week but call daily. I work every second Sunday too. Just became a grandma 8 weeks ago but have found all this drama with Mum has stopped me catching up with my daughter and grandson. Mum is still in rehab I call daily. I tried to call yesterday but it rang out and you know I hate to admit it but I was relieved...I find it hard to talk to Mum when Mum is in denial. In fact her friend called me last night and mentioned how normal mum sounds/talks and that she told her she could go home when her blood pressure was better.
Going into a home she will resent. Hugely. She will have "there's nothing wrong with me, why are you doing this?". I am sure lots here have had the same thing happen. What a wonderful site though. I can't get over how many are in the same situation and how tough it is for all of us to deal with which unites us. The support brings me to tears of gratitude. I know what you mean Nerak...I have been in stress city and my heart was pounding with stress...and heart attacks run in the family at an early age too. Ughh...can't think of that right now.
Thanks Fifimo, I guess there is no point in arguing, it is what it is (the future and the home) and i can't distress us both continually by talking to her about it.
We have the formal assessment this week and after that we need to move swiftly to find her a place or they will do it for us. I'm lucky in that one brother is the boss where he is,the other retired. And I am stuck over a keyboard working daily. But for someone so proud of her possessions and hoarded a little too (she was a London depression child born 1929), that too is going to be difficult to let go of.
Thanks to you all, I am so grateful you will have no idea. We are all in this together and hopefully our children will care enough for us to be as concerned as we are if we are in the same situation in the future.
 

Elsie54

Registered User
Feb 24, 2012
15
0
Cambridgeshire
My mum has vascular dementia and has been in a care home since May.
I have to admit it broke my heart and I'm still not 100% happy but we were in a similar position to you. I never knew when mum would disappear next. I struggled to cope with the 28 phone calls day and night asking to go home (she was at home) and wondering when dad would be home (He died 17 years ago). Vascular dementia is so strange. Mum has moments of complete clarity followed by spells of confused reality within the same 5 minute period.
Mum's CPN once said to me that mum's wandering is not only a danger to her but also a potential danger to other people. He gave me the scenario that mum may wander accross the road and be knocked over. How would we feel if that happened and how would the person who caused the injury feel living with that for the rest of their lives. Makes you think doesn't it?
So now in my heart of hearts I know that a CH setting is the absolute best place for her and I hope that you will eventually be able to come to terms with the situation if you decide on that course of action.
 

lostwithmum

Registered User
Jul 21, 2013
3
0
It's tough isn't it Elsie54. I just spoke with Mum and yes she is saying "they say I can go home when my blood pressure is down". Well they did before the wandering happened, that's true. But now she is in a secure ward with Acquired Brain Injury patients, not the ideal situation but the only ward there that is secure. I had never actually heard of vascular dementia before...Alzheimer's gets the publicity so knew about that of course...but vascular dementia has been a sharp and rapid learning process. Still they both seem to mimic each other in progression or have I got that wrong? Again still learning here. I agree about the wandering being bad for them and horrid if someone accidentally hurts them. I would also be concerned that nasty opportunists would see a frail old lady and knock her over the head for her handbag. I have to come to terms with this life's change and will do so, but it's hard when Mum is so against it and in denial. But I too have seen spells of confusion mixed with lucidity...most of the time she is just Mum, same as always. Her friends are becoming convinced that she is okay too, and the family don't need that pressure. If we didn't care then we would say, yeah go home...live independently. It's because we care we are doing this. Argghhh....it is sure doing my head in. At least with Dad we could see his physical deterioration so were prepared for the inevitable. So far Mum hasn't thought he's still alive - well not yet anyway. Thanks for the support, it is invaluable.
 

bananaskin

Registered User
Oct 3, 2013
5
0
Hi have just caught up with your post and lots of it could mimic mine. My old mum has early onset dementia which is slightly different but we had a nightmare at home with her, phone calls in the early hours, asking to be taken home etc. She had a fall in August, only fractured her finger which was lucky as she is very osteoporotic. However we were told she would be unsafe at home and we found a residential home. She has been there five weeks and deeply resents it, and tells me she will kill herself and blame my brother and I. Thank goodness for this forum because I know I am not alone.

Just wondered if there was an update on your mum.