Help,advice or thoughts please

[Martij]

Hi all
Am really at a loss what to do next I have cared for my mum for 8 years she is 80 years old with a diagnosis of Alhzeimers. Last October it became apparent I could no longer keep her safe at home as she was found walking by the police and at real danger this was on the back of a change in meds and an awful experience with memantine which was stopped. Mum was assessed as needing 24 hour care and to be honest I knew this was true as just leaving her to go to work with carers coming in sent my anxiety sky high. I am very lucky as there was a place at a residential home very near me with a good reputation by word of mouth. We moved last October which totally traumatised me but Mum really settled and seemed to buzz from the company in fact I have not seen her so happy in a long time and we settled into a new routine where I would pick her up and go out and watch films attend activities it was fab. At the beginning of November it was agreed with mums mental team that a low dose of Aricept 5mg could be tried and to be honest it has gone down hill by the end of December mum wasn't eating , sleeping and was highly anxious and worried while I was asking for the Aricept to be stopped at the start of January she had an awful fall and has broke her wrist in 2 places and forearm in 1 place. I have spent the last month at a and e and hospital because Mum has managed to get 3 pots off the result being her bones are not healing great but due to the risk of her infecting the wound they want to manage it conservatively. Despite this mum did calm down and her appetite did return but since having her fourth and final pot on she has really declined this was about 3 weeks ago she has become very tearful and refusing to eat and looks worn out and frail I bet she has lost a good 2 stones in weight the Dr has now prescribed fortisips. 2 weeks ago I had her checked out with full bloods and sats blood pressure etc and nothing showing. I also managed to get a 7 day course of anti biotics last Monday in case it was a uti. To my horror last Wednesday I found out she was not on any pain relief only paracetamol now and then and given when I hugged her she flinched and cried and just moving her made her scream I spoke with her doctor who has prescribed a low dose morphine patch and yesterday after seeing her has added liquid paracetamol despite this mums leg really still hurt her and are agitated every time she moves them she grimaces she is so frustrated and when she can't get up just cries. Mum also suffers from osteo arthritis I did ask the Dr for a short course of anti inflammatory but they are really not keen given her age and the harshness on the system and had actually stopped them a few weeks ago and no one told me which kind of fits with mum in decline and pain. I don't know within a matter of a 3 weeks mum has gone from happyish and moving around to being tearful and sat in a chair all day trying to get up and crying when she can't or screaming out when moved and I don't know what my next move should be and am devastasted and worried sick about how she is part of me wants to bring her home for a bit, part of me wants to give her some anti inflammotorys part of me wishes I had the money to hire a medical team. Anyone been through anything similar or any words of wisdom of what to push for next am getting worried mum will never smile or walk again and even though she could get spirited in all the 8 years she has never been down and tearful thank you in advance xx

Forgot to add the reason I had the Dr come back out yesterday is because whenever she moves her lower legs it seems to cause her a lot of pain and when she cries out it is not aggressive its a I'm in pain scream and she asks you to stop she also is reluctant to weight bare when standing up and goes stiff and resistant also they have started her on metazipine an anti depressant xx

 

[Navara]

The crying out in pain, the stiffness and resistance, the inability to weight bear - all of these things have also happened to my mother from November onwards and we have been told it is to be expected with the end stage of vascular dementia. She is now bedridden and sleeping most of the day and has been moved into a nursing home.

 

[bunnies]

It's so hard to watch someone decline - and you are obviously trying to do whatever you can to support your Mum. It does sometimes happen quite fast, and of course you are digging your heels in resisting it - I know I did the same. Especially when it leads to the person no longer being able to walk, you want to do whatever you can to keep them on their feet. You are doing the right thing, making sure that all remedies are tried, and that a doctor and a physiotherapist give their opinion. After you have done that, though, there will come a time when you may have to accept that there has just been a sudden decline. It doesn't mean your mother will then become rapidly much more ill, it's just that the move from one stage to the next can feel quite sudden.

 

[opaline]

When she fell did she have her hips/legs/pelvis xrayed? She could well have another fracture?

 

[Martij]

Thank you for your words it helps to hear it from people who have experience... No they didn't xray anywhere else to be honest it is all I could do to keep Mum in A and E as the effects of Aricept had her in a high level of agitation and anxiety this has now stopped since she no longer takes it thank goodness. I know it could be a decline I hate this disease so much but the will to get up is still present she rocks herself and counts to 3 like we have always done but her legs let her down this is when she sits back and cries it's so heart breaking as when I am with her she tries at least every minute and then gets upset I guess because one arm is in a pot it has really effected her confidence and mobility am really going to try and get her into a wheel chair tomorrow for a change of scenery as at the moment she is just sat in a chair in her room all day and Alhzeimers or not that must a rubbish feeling. I will keep fighting her corner just as she did for me when I was growing up I do get a bit frustrated with Dr's who always say it's the Alhzeimers they did this when she was on memantine which sent her crazy walking up the street shouting but this stopped as soon as I stopped the memantine thank goodness. You know it was only 2 weeks ago I took her for a check up at the hospital on her arm and she had me marching up and down the corridors refusing to go in xray although hard work I would sooner have that to how she is now 2 weeks later and chair ridden I guess it can happen suddenly but this very sudden and is just her mobility xx

 

[CollegeGirl]

It seems very wrong to me that they are not managing her pain effectively and this is what I'd keep pushing for. No-one should be left in pain, no matter what the decline in the illness itself. It must be heartbreaking to watch, I'm so sorry and I hope the doctors will do something about it very soon.

 

[opaline]

I would insist on xrays or at least scans to find out what is causing the pain even if they have to sedate her to do them. We wouldn't let an animal suffer like that, it's so cruel that human beings are left to suffer all the time, xx

 

[Martij]

Hi

Thank you for taking your time to listen sadly today the Dr and psychiatric nurse feel it is now end of life care she is now on oral morphine as well as the pain patch . This is so tough and really has knocked me for six as it is so sudden but she still knows me Bless her have just got home as the morphine had calmed her and she is sleeping I love her and pray if it is now her time she does not suffer she is the best Mum ever xxx

 

[suzc5hg90]

Hi Martij,

Sorry to hear about your Mum. It must be very difficult to see such a sharp decline happening just a few months. My Aunt has Alzheimer's and she has rapidly gone downhill since my Uncle passed away. Thinking of you. Suzx

 

[opaline]

So sorry, thinking of you, xx