Can't take much more, Dad nor me

[Mamsgirl]

Oh Stephanie,
you poor thing, this is so quick. Why on earth did they opt for a locked dementia ward for a man so ill? Beggars belief, and you must be dreadfully shocked that his decline wasn't even temporarily arrested. To me it sounds as though your lovely father's body has made its own decision and in refusing the very food which prolongs the indignity and suffering of dementia, is wrestling back control one last time.
When my SF was at this point my aim was to do anything that gave comfort and relief from pain and fear. I think you said he's already in an air bed, does that obviate the need for turning? The three people I've been with at the end each found being turned a trial, so by my SF's time I requested this be kept to the absolute minimum, and I'm glad I did.
But we should be discussing adjustment issues and lost hearing aids and the crazy antics of other residents so soon after admission, and I can only guess how hard the palliative care path is to fathom when you've really had no time to prepare, your head must be spinning.
Wishing you all the strength and courage in the world,
Toni xxx

 

[sunshine13]

You are such a brave, kind and wonderful lady. I am wondering how you have managed to keep going so long and supporting your mum too.

I had a similar experience with Mum, who was also in a locked ward, was distressed, crying, tearing at her clothes and saying she was so frightened. We thought she would end her days there and we were more or less resigned to it. Yes, the palliative care issue was raised and we thought we had no option but to accept.

However, , our lovely Social Worker suggested a suitable Care Home and Mum is now settled there. She is still very ill, is losing weight rapidly but is settled and eating (mush, but tasty mush). However, and this is a HUGE HOWEVER, they found she hadn't opened her bowels for at least 8 weeks - no wonder she was distressed and tearing at her clothes!! The hospital didn't seem to have thought of that, although I now know that it is typically found when patients tear at their clothes. The Nursing Home have now sorted it out, Mum 'goes' regularly and seems physically comfortable. The weight loss has been put down to her using all her strength to stay alive - she always was stubborn!

I am saying all this just in case it has been considered with your Dad. I know you said earlier that he alternated between diarrhoea and constipation. Again, I've been told that is often the case, caused by some leakage around the blockage. Sorry, this is a bit graphic, but those considerations go out of the window a bit at times like this.

I do know how you feel/felt about the word 'pads'. I went through a similar thing with Mum, when they said she was incontinent and I saw her overlarge nappy. It's just plain wrong, but you do get used to it. This is a horrible illness and just as we get used to one challenge, another comes up. With me, it was a shock this weekend to see Mum laid in bed with a pillow between her knees to stop her getting pressure sores as she is so bony. A little thing in the scheme of things ... but still upsetting.

I am trying hard not to go on about my own stuff, because you need all the help and support you can get. I'm saying all this so you know you are not alone and the people here really do understand in a way that the rest of them can't.

Love and hugs. Take care of yourself. You are doing a fantastic thing - much more than some people can, or feel able to. You are a lovely, brave, kind daughter.

xxxxx

 

[LYN T]

Hi Stephanie

I'm not used to this new format yet. I've been looking for this thread and it was only reading something that Izzy had posted that helped me find it. Thank you Izzy.

Stephanie- you are being so very, very brave-and making brave decisions with your Dad uppermost in everything you do.I also wouldn't go down the PEG route or any operations.My OH would be furious with me (pre-dementia) if I asked for any kind of medical intervention like that. I've written down (and had witnessed) what my wishes for myself are.That way there will be no conflict for my Daughter if I have no quality of life. I know that quality of life is subjective but you KNOW your Dad. You know what his wishes would be if he could only make that decision for himself.

I don't know how you are coping; but you, your Mum and Sister have my full admiration for the way you are caring for your Dad.

I'm so sorry that times are so sad for you.

Take care

Lyn T

 

[turbo]

Hello Stephanie, I have been thinking of you all and wondering how the meeting went.
So much has happened to your dad in such a short space of time. You must all be shellshocked. I've only just logged on but wonder if it might be worth starting a new thread to get some specific answers.


turbo

 

[lilysmybabypup]

Oh Stephanie,
you poor thing, this is so quick. Why on earth did they opt for a locked dementia ward for a man so ill? Beggars belief, and you must be dreadfully shocked that his decline wasn't even temporarily arrested. To me it sounds as though your lovely father's body has made its own decision and in refusing the very food which prolongs the indignity and suffering of dementia, is wrestling back control one last time.
When my SF was at this point my aim was to do anything that gave comfort and relief from pain and fear. I think you said he's already in an air bed, does that obviate the need for turning? The three people I've been with at the end each found being turned a trial, so by my SF's time I requested this be kept to the absolute minimum, and I'm glad I did.
But we should be discussing adjustment issues and lost hearing aids and the crazy antics of other residents so soon after admission, and I can only guess how hard the palliative care path is to fathom when you've really had no time to prepare, your head must be spinning.
Wishing you all the strength and courage in the world,
Toni xxx

Hi Toni, the ACAT in hospital was really based on some aggressive behaviour, and he could walk, and indeed tried to leave in the first week, and the nursing home had to make the decision based on that. Sadly, he no longer walks and is sleeping all day, but he can still get angry at shower or dressing time because they need to use a standing lifter and it terrifies him. He still has quite a bit of fight left in him and his huge bony hands are very strong.
He is spending the day in an air chair, very clever, reclines, very soft foam, and wheels to roll him from place to place.
Today he was moved to another area that's supposed to be High Care but it has residents who can walk to the dining tables, sit together and eat for themselves. There are only 2 staff for 10 residents but there aren't people wandering and being difficult. His room has a rather horrid aspect, small window, with a covered area outside and framed with plants that block the light. The other room had a long sunny window and was very cheery for winter but a horrid lounge with noise and chaos. The lounge in the new section is quiet and sunny, with lots of elderly ladies sitting about and lots of visitors. I hope Dad doesn't do anything to cause him to be returned to the locked unit.
The clinical team said that palliative care doesn't mean he's at the end, it can last for many months or even years, and they said maybe with proper pain relief he could improve and start eating. Not so sure about that. He is still drinking but without any food I don't know what will happen.
I can't imagine how Dad will be turned when the time comes for that, even if he loses more weight he will still be a solid mass of heavy bones.
Yes, head spinning, and I seem to spend half the day in a state of anxiety and the other half in tears of frustration and sorrow. The battle of eating is such that, if he's sound asleep I really feel disinclined to wake him, have a war, get one spoon in, then hope he doesn't spit it out.

Hope you're doing ok, Toni, I shouldn't speak of tough times to you, you have so much to deal with yourself. Take care, Stephanie, xxx

 

[lilysmybabypup]

Sunshine, what kind words, thank you, I really don't feel like such a sainted daughter, just muddling through, wishing Dad could be at home again. He really isn't much trouble any more but Mum is unwell, and his inability to even bear weight is making it impossible for us to handle at home.

I'm so sorry to hear the way your mum is now, I am so terrified of facing that time, how I will cope and whether I will be strong enough to watch that sad slipping away. I wish you much strength as you face your days.

Dad was constipated but had successful laxative treatments, with the desired effect. He is now getting 2 Coloxyl tablets at night but it has been a few days again. He isn't eating but I'm told he can still get constipated. It isn't the cause of the lack of appetite, since he has also had a suppository which did the trick and he didn't eat after that. I'm stunned that the hospital allowed your poor mum to continue for 8 weeks without noting bowel motions, they practically run the hospitals here around them. Dad's motions, or lack, were well monitored and treated accordingly.

I'm wondering whether the horrid minced diet is unappealing and he would rather have more normal food, but then, he isn't even eating plain biscuits or liking his cup of tea. Oddly, when I ask if he wants a cup of tea he says yes please. But when I offer it to him he has one sip, shudders and won't have any more.

I don't know what to wish you, but I'm glad she's in a good place and feels safe and happy. I suppose I will wish you whatever you wish for yourself and your mum. I can see you too are a devoted daughter and I'm sure your mum appreciates that on some level.

Stephanie, xxx

 

[lilysmybabypup]

Lyn, I don't think I'm any more devoted than you are to your Pete, I know you've struggled dreadfully with him going into care, that is most certainly love and devotion.

I absolutely agree about intervention and setting out your wishes now. I haven't done it formally but we've had the discussion many times. I keep saying to put me in care and live a life, but my husband just says, yeah, yeah, meaning he won't. He says if he wants to care for me he will.

I don't feel the least bit brave, in fact I feel a coward for opting to let Dad stay without intervention. It would be too hard to watch.

Thanks for all your lovely words, everybody's great compassion and encouragement is so uplifting.

I hope you have some more great visits with Pete and you find he happy and well.

Turbo, I feel so humble in light of all the lovely comments, I don't feel particularly heroic, more guilty and vexed. I suppose a new thread could open up some discussion but I think we have made up our minds. I will give it a try. Thank you so much.

Stephanie, xxx

 

[Davie1967]

Davie67

Dad is still in hospital after his Delirium episode on Tuesday. I feel like I've been put through the wringer. I know he feels worse

Goes something like this, I'm in the hospital about 14 hours a day, Dad is barely eating, and I'm having less. An as yet undetermined infection is supposed to be present, urine clear, temp normal, ct scan good, lungs clear, demeanour varies between quiet tears asking if I will stay, telling me, "I love you my lovely mummy," and "I'm so worried I'm going to lose you," to trying to pull out the cannula, yelling at me and telling me to go away, shoving and getting abusive when we try to help him into the chair or bed, constipation followed by diarrhoea, followed by dehydration and low blood pressure, spitting out tablets or yelling, "why am I forcing him to take tablets that aren't his?"

He's barely eating, nurses come in and say I need to get him to eat, they want to do checks, a bladder scan, connect the IV antibiotic, bring me a supplement I must get him to drink, clean him after an accident, change his bed. They try to be kind and explain what they're doing but use words like, "change your pad," and "clean your bottom," when he is not usually incontinent and furiously resisting because this isn't his reality. He needs help with urinating because he's virtually blind, no longer knows the toilet, can't find a bottle, but yells and pushes me away when I try to help, so it ends up on the floor and his gown, and then we need to change him while he's tired and confused and fighting every inch of the way.

I've been there much on my own, my sister left her baby with her MIL yesterday and spent several hours there while I took Mum to do her shopping. He slept through much of her time there, she needed to leave in the afternoon and he then had a dreadful evening.

Today my husband, who is working on a final project for his Masters, came for the afternoon because I couldn't do it alone any more. After a harrowing afternoon I spent until 10.45pm sitting and holding his hand as he wept in fear I would leave, then telling me I need to go home, I can't stay there all the time. He was exhausted and usually goes to bed at 7 but kept waking and asking, "where are you my mummy?" I felt I should stay the night but needed to get away and eat and sleep.

We had struggled with the notion of respite, Mum is breaking down, and I initially thought he seemed unaware he was in an unfamiliar place and hadn't wanted my mum, so maybe going from hospital to respite wouldn't be so bad. As the days progress, he's more distressed and nobody can prove to me his delirium was infection-based. I don't think I can take him home to Mum because I think she's finally getting the rest she's needed and may be fearing his return. My fears about how he would handle being away from home and from us are realised. During the day my heart has been broken by his tears and plaintive pleas, then wounded by his anger and accusations.

I understand none of this is deliberate or manipulative, and he's utterly frazzled by all that's happening. I can't say that he's this way from an underlying cause that is proven, rather, the constant "interfering" as it seems to him, and not being in his home or finding Mum beside him at night.

What am I to do??????

I had the same problem with my mother in the earlier stages of Alzheimer's. she would not sit down and just run up and down the stairs 24 hours a day.if you tryed to stop her she would just lash out at you even although she was very soft natured person before the illness. I ended up having to force the doctors to put her on medication to came her down so both of use could get some rest. Hope this helps

 

[Boz Rihan]

Dad in hospital

If you are considering respite why not permanent placement? Isn"t that going to be the next step anyway? Easier said than done I know as I am battling the same demon. Most medics are unrealistic. I went to see a consultant for care for the elderly as Mum was referred while on hospital as she had dreadful nights and I thought the cons would have some advice and all she wanted to talk about was osteoporosis. Mum is 92. I am losing it. Osteoporosis for goodness sake. The whole caring thing is just too too much. I am sorry I brought Mum home from the hospital as I could have found her a home and it would have made little difference to her I think. But I was at the hospital every day from 10 until someone turned up to relieve me. I have a wonderful son who is my rock but it's getting to us. I dread each day. My only light is that surely it cannot go on too much longer. Be as kind to yourself as you can. It's a ******* disease it really is. Family suffers most. All best