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I'm in bits, I just don't know what to do - Page 2 - Carers UK Forum

I'm in bits, I just don't know what to do

For issues specific to caring for someone with dementia.
Taking a video might be an idea.

Last night she was overtired I think, and very confused although she was talking away happy as Larry The physio has been already and she's been up on her feet. She is improving - on Sunday it took three bits of equipment, two nurses and 20 minutes of coaxing to get her to stand so they could put her in bed. Yesterday it only needed one bit of kit, one nurse and 3 mins to do the same. She seemed steadier.
That's real progress. It's so important to get up and moving after hip surgery, at any age. It reduces risks of other complications.
A broken shoulder as well is a huge complication. Normally crutches or a Zimmer frame would be used to aid walking but presumably because of her shoulder, this is not an option.
That's what they told me. So much more difficult when she's only got one arm to support herself. She gets tired very quickly and then starts rambling a bit. It's too sad to witness especially considering just a few days ago she had a few difficulties but was more than capable of doing for herself.

I hate this horrible condition. It robs us all.
I think what I find so distressing is that last Friday morning, I dropped of my cat - Mum always looked after him - and she was spry and bright. I would NEVER have left her otherwise.

Mum sometimes would call a duck a spade, sometimes put things in the wrong cupboard and forget where it was. She couldn't always remember characters on a soap she'd watched for decades but she followed the plot pretty well and enjoyed watching and reading.


How can that all be gone in less than a week? It's hearbreaking. We were upset when she got her diagnosis but the doctor reassured us that it was likely to be a slow moving condition as she is 82. She's been doing so well but the plummet this week is devastating. She was busy and active just a few days ago - 6 days in their custody and she's disappearing in front of our eyes.
Nikki,
she has had a traumatic and painful fall and been through major surgery, she is in an unfamiliar place, with new people and she still has a lot of meds in her system. She sounds sprightly when she isn't tired, but understandably her confusion is worse when she is tired. She is making gains physically - no mean feat. I have had two hip replacements, one aged 30 and one in my mid 40's. The first two weeks after surgery are the worst, then it starts to get easier. I don't think you will know how she really is until more time has passed. This op was much bigger than the cataract operation she had.
The nature of dementia does of course mean she will decline, but that doesn't mean she won't improve after she recovers from the op.

Have a look at https://www.alzheimers.org.uk/ it offers information and advice for all types of dementia.

Melly1
I'm really grateful for everyone's advice and help. I am trying to keep optimistic although it's hard to watch her decline so rapidly.

We'll keep our fingers crossed that she improves as time goes on.
Nikki, try to think of it like a delayed shock to the system.

This sort of operation wasn't common even 30 years ago, and it certainly wasn't offered to very elderly patients.

I know it might be difficult for you, but if you read about what actually happens in hip or knee surgery, it's really very drastic.

Not only to the bones but to all the supporting muscles, ligaments etc. It's tough when you are relatively young and fit, but a million times tougher nearer the end of a life, when nothing is working as well as it used to.

When Nan was chatty before, and now she isn't, and you are really worried about that, maybe she was still a bit "high" on the drugs she had been given to manage the pain, and now she isn't. The feeling of tiredness, just wanting to sleep, sleep and sleep some more always takes me a long time to get over.

Try to be patient, to be glad that the surgery was offered to nan, that she didn't have complications that meant surgery wasn't an option, to be glad that she came through the surgery unscathed. Being patient is definitely not one of my virtues, but really only time will tell how nan is going to be in the future. The NHS has done everything it possibly could to give her the best chance.
Nikki,

I could have written your post about 5 or 6 years ago. In my own experience, and yours may be different, anaesthetic did cause the dementia to worsen. In any case it is a degenerative awful disease. In my mum's case it was dementia plus a broken leg.

You will not know for sure the outcome for some weeks yet. Mum is in an unfamilar place surrounded by strangers. And is she drinking enough? Any UTI or urinary infection will also mimic dementia. While she is in hospital, it is a bit of a waiting game. And you of course are exhausted, anxious, at the end of your tether.

One thing I did do, and I would recommend, is take this opportunity to visit nursing homes. Mum is safe in hospital, in good hands. You may never need a home for mum but if you do, sometimes you need one reasonably quickly. To get an idea what is available in your area IF you ever need it may help you too to feel a little bit in control. I would also recommend keeping your own home, and job, identity as much as possible. I know this is much easier said than done.

Before mum is discharged, please insist that there is a care plan in place to assist at home.

https://www.ageuk.org.uk/information-ad ... -hospital/

A dreadful time for you but you will get through this, and we are all here for you virtually,

Take care,
Anne
Hi Nikki

There were many points in your posts that resonated with me and even though I'm a brand new member today, I want to say " I'll walk beside you."

The most striking point that you made, that stood out to me, was how rapidly your Mum "deteriorated" from how you knew her to be .

This is exactly the most shocking thing that we've seen and are handling with my Mother-in-Law. My Mother-In-Law is 88, so she is reasonably similar in age to your Mum. (Only diagnosed in July this year.)

So, although none of us can change what is happening to them with this awful disease process, nor can we change the relationships we've had with family in the past,( I also truly understand that same pressure you're under!!), it is testament to YOU as her Daughter and a very decent caring human being, that it is YOU who knew that you had to reach out to find support for you and your Mum. That is such a beautiful and rare quality and please try to start to believe that this makes you a very special empathic person. And the world needs more people like us.

I'm taking one day, and even one moment at a time right now. And having found this forum, I know I'm not alone and neither are you.

Take Care, all the best.
I did speak to the Patient Advice and Liaison team and the ward sister responded. They have put a sign over Mum's bed that she will need packets of food etc to be opened which is great although it seems like common sense to me when you have a frail patient with only one fully functioning hand. It is progress though. They are putting her on the commode so although she's still having to wear pads at least that is also progress. They are still talking to her as if she's 6 rather than has dementia which is annoying but Rome wasn't built in a day.

The Ghost Sister keeps wafting in and out doing as little as she can get away with - I feel a massive row brewing there unfortunately.

I was a bit worried about an event that happened yesterday to a patient nearby my mum. In the usual fashion of hospitals a registrar came to see this lady and, in the usual fashion of young doctors, decided that as she was elderly she was probably completely deaf and decided to bellow her business so we could all hear. The upshot was that they were sending her home that day. Poor soul she was completely panicked. She hadn't any nearby relatives and the couple of people with her at that time were from Nottingham, miles away. She hadn't any street clothes, there would not be a bite of food in the house and then the reg announced that the carer would not be coming until the following day and only once daily, not 3 times as she had been promised. So clearly the plan was to simply dump the poor woman at home without the slightest idea how she was to manage.


The consultant was summoned and they insisted that she was going home come what may. When I returned that evening she was heading out.


They should not be able to do that. How on earth do they imagine that an elderly patient with no immediate family support and a massive neck brace was going to manage to fend for herself when she could barely walk??? Actually Mum reminded me that they did the same thing some years ago to an elderly neighbour of hers who was brought home from the hospital by ambulance without any sort of warning or preparation and simply dumped in her living room. They didn't even help her take her coat off. If Mum hadn't happened to go in on spec to make sure the house was all right she might not have been found at all.


I'd hoped that this was a one off but clearly things have not improved one iota.