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Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.
.I don't what I've done, but my last post is before this misake. I'm a bit flustered tbh
That sound like a useful meeting and the best outcome you could have at this stage @Palerider.
Any luck on getting yourself a job a bit nearer home, that would help a bit, I always found commuting more tiring than work.
It wasn't an easy meeting as always anyone who has a 'duty of care' wants things neatly packaged away so that they can sign things off. We also talked about progression and the signs that mum maybe soon moving beyond this current stage, to a,point where she no longer wanders and becomes what is termed 'inanimate' -a concept I find quite horrific personally (inanimate -an image of someone isolated in their own body unable to communicate to the outside world, no movement). There are better terms that explain the end stages in better ways.
I'm feeling a bit better, just off the phone with one of mums only surving relatives her SIL who is 84 and they have been good friends since they met. She just said if a care home is what is needed then go down that road, she said mum would agree in the end if all else failed. Its very hard to know what to do for the best when you have no one to bounce ideas and thoughts off.
I find the word 'inanimate' very cold - immobile would be better, although still not a pleasant thought.
There could be many years before your mum's wandering phase ends, and loss of mobility won't necessarily be the cause, it will be another phase.
Not sure what you deleted or if you just double posted, but just because your mum is happy in her home, doesn't mean she won't be happy in a care home.
When my mum moved to her extra care flat, it seemed like a big weight had been taken off her trying to deal with day to day living. In her house there were triggers of things she should try and do but couldn't follow through whereas in her flat much of life was taken care of for her, and she became more relaxed and happy than I had seen her for a few years.
Hi @jugglingmum you need to read post #660, thats what my last entries relate to, I think due to my error you have missed the crucial bit
I've read post #660 - just wasn't sure if you had deleted another post.
I think what I was trying to say is just because your mum is happy at home, it doesn't mean she won't be just as happy in a care home, I know her wish was to stay at home, but dementia doesn't follow norms of contentment.
It might be the wandering was a one off, and it might be door sensors and trackers will be enough to keep her safe.
I'm glad you've got a resolution which feels comfortable for you, as I get the feeling that trying to fit it all in is a strain on you (jugglingmum is a name I used before dementia hit, juggling my work, kids and my sport before the kids were old enough to do sport).
Yes I see your name on here and yes fitting everything in is becoming too much. But the decision I came to today wasn't about any of that, which I know is alot for one person, it was about the fact that mum is now wandering with no purpose and now likely no longer knows where home is half the time. I could vouch for mum on lots of things, but I cannot vouch for her safety and its not just busy roads, its also weather conditions if she wanders without adequate clothing (hasn't happened yet, but there are signs she will do) given we live in rural Cheshire.
She also no longer has any capacity at the moment post UTI, and now after the right antibiotics shows no signs of regaining what capacity she had. Where once I was saying she could walk round the estate and return, she now doesn't recognise the house. I have bought her some time with the SS to see if she recovers, but the matter is now almost out of my hands as the SS will takeover if this last attempt fails and she will be placed (or forced) into care. My input today was the last I am afraid as this is now a 'best interests' decision (it is no longer up for debate), unless I have any serious objections or concerns.
I have had a long weekend from Friday till now, and I am tired. I feel terrible and that I have betrayed mums trust in me to see this through so that she remained at home. But as many sad stories on this forum tell, there comes a point when keeping that promise becomes unkeepable. Within the turmoil we feel in the final decisions we make we have to find peace, if we can't do that then we can't carry on through lifes journey. I don't know how I will reconcile todays decisions, but today has already become yesterday and by time alone I have been moved on. This journey was easy until the now, and now I have to find a new meaning in the gap I just created. I know that mum would forgive me, but can I forgive myself?
I am off to meditate and fall asleep to this
I suspect that my mum is only a short way from also being unsafe living alone, I cannot think of any more support or interventions we can put in place beyond everything we have done. At the moment mum is able to walk a short distance on her own to a local shop and get home again and is very good at locking the doors. But I'm sure that the time will come when she cannot do that safely and for me, that risk is my line in the sand. It doesn't matter where you live, rural or in a city, the dangers are the same and measures would have to be taken.
At the moment, I can go to sleep knowing that mum is safe at home, the camera alerts me when she goes out and when she returns. But if that changes then some serious family discussions about care homes will have to take place.
We have had no involvement with any professionals, medical or social, since her diagnosis five years ago so I'd have no idea where to begin!
At least I have brothers and sisters to talk to and share the responsibility, I would not be able to cope on my own, I don't know how you do it and hold down a responsible job as well.
Healthwatch actually contacted me and wrote down and listened to my frustration being passed around from pillar to post with no end result. I told them that Dementia care needs to be fixed and the pressures on the Carers is leading to catastrophic carer breakdowns. They gave me a list of approx 30 different agencies in Dementia Care, I went thru them and found I'd spoken to all but two of them and wrote down who'd passed me to who etc. Told them that the local council 'provides' these services and pays these people for what?? My leaving note was that they are broken and that Nobody not one single service takes ownership. Left hand doesn't know what right hand has done nor do they seem to care as long as they've listed my mums name, address etc ✔️tick we did our bit and passed details.
That was it, never heard from them again nothing has been published but I'm sure they got a tick to show they are Dementia Aware and are listening
Sorry things seem to be coming to a point where you feel your mum is no longer safe at home. My sister and I are at the stage of having chosen a care home for mum because we too feel she isn't safe at home (a danger on the stairs, not eating/drinking unless prompted etc). We wanted to keep her at home as its what she wants, but sadly her needs can't be met there. You have done so much for your mum, so don't feel that you would be breaking a promise, but that you are doing what is best for her. Hope all goes well
I remember this stage with mum.
Not recognising your own home is a game changer. The insistence on staying in your own home is completely understandable - home is somewhere comforting and familiar. But what happens when it is no longer familiar and offers little or no comfort? If you dont recognise your home as home then it will feel like a prison, like being in solitary confinement.
There is also the safety aspect. Once mum started going out during the day and getting lost, it wasnt long before she was going out in the middle of the night dressed only in a dressing gown. She was also becoming as nuisance to the neighbours. Im afraid her wandering never did stop. She used to wander around the care home corridors all night, but the staff didnt mind and she often had other residents who did the same to talk to! It was only once she became immobile right at the end of her life, nearly three years after she moved into the care home, that the wandering stopped
I remember realising that my dad wouldn’t be going home again. I did my best and managed to keep him safe. He only spent the last 16 weeks of his life in a carehome. He’d settled nicely when he died unexpectedly.
Dad wasn’t a wanderer though. He’d had one incident of wandering in the early morning (I got a 3am call from the police asking me to go over to his house and make sure he was safely settled).
I locked dad’s front door and put the key in a safe place so he had to find it before he could unlock the door. He never wandered off down the road and got lost again. He always had access to his back garden and that was enough for him. I did wonder if I’d have to find him a carehome at that stage as he was vulnerable wandering the streets in the dark and scaring his neighbours by knocking on their doors at some ungodly hour! But as I say, it was a one off. Maybe you’ll be lucky with your mum too.
I slept but woke this morning but with my head in a mess, swirling round trying to make sense of what happened thus far. The adrenaline is now pumping round and the 'flight fight response' has kicked in -I'm a bit shaky today. Realised I need to get my name down for housing.
Thanks @Bunpoots, I can only hope this is a problem that won't become so big that we have to go to a CH. It will either settle down, or get worse.
@canary its early days yet, sometimes I can't make out where we are at, but I think you are right about not knowing home, mum is becoming more and more insistant in going for a drive?? Yesterday I tested the water by taking her where she grew up, and she didn't bat and eyelid, despite asking to go there (of course it has changed in 60 years).
Thanks @Lynmax , its very difficult deciding things on your own, I don't know how I do it some days to be honest, sometimes I'm clinging on by the skin of my teeth. I was fine and had become settled with it, but this now has brought everything back up again -a range of emotions and feelings and to be honest I feel scared by it, as rediculous as that may sound.
Thanks @anxious annie, I forget that I have done alot here, so thank you for reminding me of the good things I have done.
@wonderfulmum, this would all be so much easier if the care agencies were integrated properly. I am still annoyed that I had to get annoyed in order to get the SS to come and review
Anyway this is now my formal day off and mum as usual is coat on handbag ready for a drive out and cake somewhere. I am back at work tomorrow, so that will be a real test of how things go, the SS haven't had the sensors or tracker fitted yet
I drafted this on the train this morning, before others commented in reply to your comment. I was concerned about you being at work and worrying about mum at the same time and then a 50 mile drive home in terms of juggling. I don't think it translated well into the written word. - added I think your state of worry is what is coming across.
Where I live, although on an estate, catches the frost outside my house and there was a frost on sat morning. Having mountain biked in delamere in the past I can predict that will be 2 or 3 degrees colder than here (useful when roads are icy but snow will have stayed in delamere from a mtb point of view ). As an outdoor sports person I am a studier of local micro climates. You I think are further east so I guess colder and frost is already here. I think your concerns are valid about your mum wandering - but at the moment it is a one off
When you promised mum you'd keep her at home it really meant to keep her at home whilst she was safe and happy at home.
My take on it is that PWD often get to the stage they need a lot of reassurance, whilst my mum is in a flat on her own, she clearly expressed to me that she knew there are people at hand when she needs something. I think that unless they can see someone they are anxious a lot of the time.
I notice you mention housing list, what about private renting or taking a room in someone's house - I'm thinking there might be a list where you work of people offering rooms. Or there might even be some short term accommodation available ??? If you sound this out it gives you some feeling of security for yourself?
I think Bunpoots solution is something I could live with, I think her dad's back garden was secure and he couldn't get out. On the other hand where PWD are determined they will find a way to climb over things (I can envisage my mum would have done this, her dementia logic saying that was the thing to do - and also maybe reverting to childhood when climbing over garden gates to scrump apples etc was widely done by kids - mum was always one for going where you shouldn't if no one was looking)
Yes my dad's garden was secure enough for him. He wasn't the type to go climbing over 5ft fences. I may be more difficult to contain if I ever get this wretched disease
Well today mum isn't as confused, so the UTI must be resolving, however she is dead set on moving from here back to where she grew up. She is saying that gran is still alive and that she wants go there, so we have to sell the house.
I think this is very much now a marked change and upsetting as she is gettng quite agitated with me as she is convinced this is what she needs to do. She has done this before but then changed her mind and been settled again. I wonder if this is another moment of doubt, or if she is now permanently going to have this outlook???
If this is now how mum feels, then it is going to be very difficult to keep her reassured in the scheme of things and might be the cause of the wandering. @jugglingmum it is becoming more difficult to say if she is still really happy here or of that has now gone.
Nothing is ever crystal clear with this disease, alot of decision making is based on reading inbetween the lines -there is never any certainty, until a change becomes established. Difficult times I guess.
Right now I am finding mum difficult to cope with as I can see she is set on moving home, -any ideas how to calm this situation??
Change of plan, just of the phone with the SS, mum is going to go into respite care, she doesn't know this. I can't leave her like this and there is no one that can take over from me. I feel terrible but there is nothing else I can do now.