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

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

For issues specific to caring for someone with dementia.
Mum had her actual diagnosis just before Christmas and although her nearest and dearest had witnessed a steady decline over a couple of years, she'd always denied - and still does - that there was a problem.

It has been worse than hard work trying to support her and persuade her to take any advantage of the support and help available from our local Memory Clinic. I'm exhausted to be honest. I've been with her every day morning and evening, trying help with this and that and today is the first day in years that I have not seen her.

Yesterday she had a major fall at home and broke both her shoulder and hip. She's in the hospital now having had a total hip replacement and we haven't been able to see her. I know she's in a safe place which is good but I can only imagine the panic she's in not seeing a familiar face.

I'm terrified of the future. She'll need so much more care on return home and I just don't know how that is to be managed. I can't give up work, my home is my one sanctuary and I can't lose it however selfish it seems. Looking after her has separated me from any friends so right now I don't have a soul to support me. I have a sister who is a selfish bag of wind and only helps when asked, never offers and my Mum didn't want her much involved anyway. She doesn't trust her and we had a big disagreement over the POA. My sister demanded that she be included although Mum was adamantly opposed. I managed to negotiate a partial solution with my sister as a deputy and we agreed that we would all be on the medical POA which seemed to suit. I left her to sort that out and now it appears she didn't do a damn thing with the excuse that she thought I had done it. She'll happily leave everything to me and not once volunteer to do anything.

She'd gone down for surgery when we went today and that's why we didn't see her. I ran madam home tonight and her first words were that she was off down the pub for a nice meal - and several drinks I suspect.

Other than my sister and her shyster sons I don't have any other family. My mum's sister who is the one person I would have gone to for support passed away herself last year.

I can't stop crying. Mum looked so frail when we left her last night.
Hi NIkki,
you must be exhausted and worried, on so many levels.

She will probably be on a morphine pump after her operation and wanting to sleep, so try not to worry too much. Try and get some sleep tonight yourself and then visit her tomorrow.

The hospital should have dementia champions so it's worth asking about this when you next ring/visit. Some hospitals are a lot more flexible over visiting times for those with dementia - you might find info on the hospital website.

With a hip replacement and a broken shoulder - your Mum is going to have difficulty with her physio and learning to walk on her new hip - as after a hip replacement the physios give a patient a zimmer frame to walk with, then crutches/walking sticks. Your mum will be entitled to rehab - I would push for this to be residential rehab care. Use this time to look rest, recuperate and explore the options. Look at care/nursing homes - explore what is available (ensuring they have a dementia unit,) so you have done your homework if this is needed.

There is info here on hospital discharge https://www.carersuk.org/help-and-advic ... f-hospital

Thank you for your reply.

I saw her twice today once with my sister and once on my own. When I saw her the first time with my sister it was a terrible shock. She seemed to have deteriorated dramatically from the woman who was talking coherently, if a bit vaguely, to the nurses. We told ourselves that it was more to do with the pain meds. I dropped the sister off at home and came back for some tea myself but for some reason I had a really bad feeling and I decided to go back. She was a different woman, again still vague, but she recognised me which I couldn't have said for certain at our earlier visit and we actually had a conversation about what's to happen eventually. I did wonder if it was possible that she'd gone on 'shut down' because my sister was there. She really does not like my sister much at all bit the sister does not really grasp this.

My sister keeps trying to force her wretched children on me - 'so and so would LOVE to see his nan' forgetting that so and so hasn't bothered with his nan for years. I don't want to keep her from seeing her grandchildren but I'm going to be outnumbered and my sister's family are worse than hard work. One visit every three months when she sits on her bum and doesn't even make Mum a cuppa doesn't make her a carer or even support.

It is hard enough seeing my poor Mother drawn so low but feeling as if I'm parrying my sister at every turn is exhausting.

Plus I feel like I'm turning into a miserable, whingy cow. We have to deal with it whatever comes but it's going to be so messy.

I'll certainly bear in mind the information you've given me. I'll see if our hospital has dementia champions.
My wife's dementia was much worse after having a general anesthetic too.
Maybe doctors should give epidural injections instead?
I seem to remember my Nan having the same difficulty after she had a general for cataract surgery. It does make you wonder.
My husband couldn't have a bowel procedure. The consultant couldn't take the risk. He would have had to remain completely still otherwise a bowel perforation was likely. Poor hubby he would have become agitated and possibly aggressive, not understanding in his dementia world. He may have agreed, then forgot.
Its so heartbreaking, what we all go through, watching loved ones decline with dementia, and other terminal illnesses.
I've had 8 operations, 8 general anaesthetics. The first operation was awful, I was sick and mentally alert, but just couldn't speak, it was too much effort. My husband often reminded me later that I just told him to go home! He'd been working all day and I could see he was tired, it wasn't that I didn't want him there!! I was also physically sick afterwards.
Next op was so different. I told the anaesthetist what happened the previous time, he gave me something different, worked wonders, I was chatting to the nurses quite normally in the Recovery Room, no sickness. After that op, I always asked for the same "recipe".
I'm a great fan of morphine pumps for the first few hours after surgery, great for relaxing and taking the pain away, but it does make me a bit mentally strange.
There's a lot of stress involved in surgery, and a lot of healing has to happen afterwards. Don't worry too much about mum these next few days, just let her body recover in peace, with food and rest. I always reckon it takes at least a month for all the anesthetic and effects of an op to wear off. This is the bit the NHS just don't get. You may be over the op as far as they are concerned, but that doesn't mean you just go back to how you were immediately!
Anaesthetics may affect people with dementia differently, but don't draw any firm conclusions yet.
Many thanks all of you for your kind support.

Speaking to the hospital this morning they sounded surprised to tell me that Mum was sitting up and chatting well. We did try to tell them yesterday that the sad creature in the bed was not anything like the person we had on Friday but of course, they knew best.
Can I suggest that each time you visit mum you record a short video of her?
Hi Nikki,

That's great news that she is sitting up and more coherent again. :D There probably wont be any physios about today, but make sure you find out their plans for getting her mobile again - the longer she stays in bed the harder it will be for her to get back on her feet.
Nikki_1906 wrote:
Mon Aug 26, 2019 2:19 pm
Speaking to the hospital this morning they sounded surprised to tell me that Mum was sitting up and chatting well. We did try to tell them yesterday that the sad creature in the bed was not anything like the person we had on Friday but of course, they knew best.
I have had similiar with my caree, taken him to the doctor poorly and they have needed a lot of persuasion that how is presenting isn't typical of how he usually is.

BB's idea is a good one. I had to show a consultant video clips of S doing an activity seizure free and a video clip of him trying to cook whilst being interrupted by absences and complex partial seizures for them to appreciate it wasn't part of his autism and acknowledge his usual level of functioning.