Can't take much more, Dad nor me

[KentJude]

Hi Stephanie as your day starts, just wanted to say I hope it turns out to be a better than expected one.

As everyone says, it's unacceptable that the staff are guilttripping you and expecting you to do their job, even more of a cheek to ask if any other family are coming.

As regards your poor dad's delirium, well delusions are a part of alzheimer's. But they can be sure to several other things such as those you mention and meds.

Apologies but am very tired and have to loud of now.

All best wishes for a quiet calm day.

Jude

 

[lilysmybabypup]

Ah, all the lovely TP friends, you have no idea how much it helps to just see some words of sympathy and support. I know you really understand my situation.

Today Mum decided I should stay home and relax, so my husband took her to the hospital. It's funny how she is so better able to lock away her emotions. I'm definitely my father's daughter, he was always the worrying one and Mum was the "just get on with it" one. She phoned last night to ask about things and I said I'm so guilty and worried when I leave Dad there, even though sometimes he can be a little grumpy with me without reason. She said she learned long ago to build a wall and leave it all there behind that wall. She says the family is going to be worn to a frazzle and burned out and Dad will be the only survivor. Wise but difficult words.

I shall now spend the afternoon at home doing some housework that seems to have piled up. At least I shall be home, and that's nice.

Stephanie, xxx

 

[LYN T]

Hi Stephanie

I've just caught up with your thread.You and your family have been having a terrible time. I'm sending you my sympathy because this is so upsetting for you-not helped by the nurses not being top-notch as it were.They are not being very professional asking you to stay and help with medication.Humph!!!

I hope you have enjoyed your brief 'time-off' at home, and your Dad is better soon.

Love from Lyn T

 

[lilysmybabypup]

Hi Stephanie

I've just caught up with your thread.You and your family have been having a terrible time. I'm sending you my sympathy because this is so upsetting for you-not helped by the nurses not being top-notch as it were.They are not being very professional asking you to stay and help with medication.Humph!!!

I hope you have enjoyed your brief 'time-off' at home, and your Dad is better soon.

Love from Lyn T

Thank you Lyn, it has been difficult but no more than that endured by so many here, and much less than others. Yes, some staff have been very good and others seem a little afraid of handling him. He has become much more calm this week and hasn't been desperate to "go home".

My son and DIL went to visit a couple of hours ago and took Mum back home. Today Dad has been sleeping and spaced out all day, Mum said he even ate his lunch in his sleep! What is this about? He had spent a good night asleep so that is comforting.

My day has been relaxing, a wet, winter's day, sitting under a throw and watching a movie. It has been good.

Hope you face a good day too, and thank you for catching up.

Stephanie, xxx

 

[starryuk]

Glad you are relaxing, Stephanie.
Sorry the weather is awful for you...ours is a little better at the moment.

Just thought I'd slip this weather story in... A few years ago, well quite a few... two friends and I planned a big summer holiday (teachers! so in July.). They went off to Australia and then we were all meeting up in Canada to 'do' the Rockies. After the first drama of the lost passport, off they went.

A day or two later I received a furious text from Sydney.

"You didn't tell us it was winter here! There's snow!!! We have seen a kangaroo on the TV hopping around in the snow!!"
...and there they were with their little summer frocks!
Needless to say they had to go and buy a whole lot of warm clothes.

They did a wonderful coach trip up the east coast, all the way being promised better weather tomorrow, but it wasn't until they reached the very most Northerly point that they saw any warm sun at all!!

To this day we cannot imagine how we were so stupid! We put it down to the stress of the end of term, followed by the rush to set off!

Your mum is a wise woman, isn't she. I am glad you have taken her advice. I, too, think the hospital staff should not be relying on you.

Hope you get an early night and don't have to go back to settle your dad.

xx

 

[Mamsgirl]

Hi Stephanie, I agree with 60's child and Rosie about the unfairness of depending on family to be present for long periods of time. While my stepfather's NH doesn't make any such demands overtly, it is very clear that the sort of care and observation I feel he needs are only going to happen with daily input from family. And I don't mean visitors, I mean roll up your sleeves and stop being squeamish about body functions input Are you worried your dad doesn't get the care he needs, and I include patience, understanding and maintenance of dignity here, if you're not around? Hasten to add I'm not suggesting you do, just wondering if this, together with all your love and protectiveness and sadness at seeing your Dad so ill, is adding to your load. Rambling...what I'm trying to say is I think you shouldn't be factoring in staff convenience when you're trying to balance your father's needs and all the other things, not least of all your own health, you're responsible for. Whenever I've got a bundle of questions like you've mentioned, I ask for an appointment with my SF's doctor, not on the fly between patients, but at an arranged time. Have found anything not said when we BOTH are taking notes, stands an excellent chance of slipping through the cracks. Good luck dear one, hope you get some rest tonight x

 

[lilysmybabypup]

Starryuk, what a funny thing to happen, at least you had a good excuse for some holiday shopping.

I actually love gloomy wet days when I'm indoors. Also an ex-teacher, can't say I thought much of them when I was still teaching, stuck at recess and lunch in the classroom with stir crazy kiddies!

Mamsgirl, hope your SF is continuing to improve. I agree that I need to consider my family's and my own welfare above that of hospital staff, it's more for Dad's well being that I stay so long. Being in hospital, he doesn't have staff who are familiar or comfortable with dementia patients, with a few exceptions, and they don't have the 1:1 nursing they should have. They only had it the 1 day after I had complained that he might fall without supervision, and then he did fall! But the rest of the time it's passing glances in the door to see what he's up to. I'm sure if he was in a residential facility they would be more adept at handling him and he would have more company.

Not sure if the dr would have any more to offer me, it's really still a guessing game and they're treating almost in case he has something, it seems. The senseless chatter yesterday followed by the very heavy sleeping today still worries me but who knows what tomorrow will bring? Wish he didn't have to be there, he misses home and Mum dreadfully, even if he can't really say it.

Stephanie, xxx

 

[Big Effort]

Hi Stephanie,

I've just logged in to see how your Dad is and all of you are faring.
By the way, I am a teacher too...... lots of us here, I think.

the senseless chatter yesterday followed by the very heavy sleeping today still worries me

I think dementia is a very tiring disease. The poor brain is running on low to almost empty depending on the stage of dementia one is at. I notice that anything, an upset, tiff, misunderstanding, a trip out, a wet day, a hot day..... you name it.... anything that runs extra to dementia is a huge challenge to the poor person.

Imagine the mental turmoil we are in when we go to hospital, court, exams and so on, and we have 100% mental capacity. We carers are devastated by care home visits. I suppose for the person, this is the biggest alteration in life they have ever experienced. Perhaps is it natural enough if they chatter, sleep off the stress, worry, fret, and shout. If someone were to put me in a home, I would be the same.

Don't want to downplay your Dad's state of health, as of course his immune system may be depleted by the huge upset, and also he may be encountering bugs previously unknown to him. However, he is facing huge change, so all may be part of adapting to a trauma beyond compare.

I send you and your Dad, your Mum and sis gentle times ahead. Also that your poor Dad gets some much needed peace and genuine rest. Perhaps he is actually adapting/accepting the current situation and is relaxing more and fighting less? Just some thoughts of my own on reading the progress over the last few days.

Big hugs to you, BE

 

[Laine5]

Lilysmybabypup,
I so get where you are coming from now, having read this thread. When Mum had her 6 week hospital stay, she too was in a state of confusion and deeply unhappy. Not once did we think she actually knew she was in hospital. She didn't eat or drink and I went in for meal times to try to encourage, but in reality spent most of the day there. It was a horrible, horrible time and I also witnessed lots. I think it has played a big part in wanting Mum to stay at home as long as possible. Too close to same situation to give advice. You can only do what you can do....

 

[Mamsgirl]

Isn't it funny BE that we log on to see how other people's loved ones are doing? I think that hard as the road a caregiver walks may be, we gain a great gift of empathy and connectedness, that I for one, wouldn't give back for the world. Of course I'm saying that after the first uninterrupted night's sleep in weeks Stephanie I hope the rest of today's a good one, hugs from Arctic Melbourne x

 

[Mamsgirl]

Lilysmybabypup,
I so get where you are coming from now, having read this thread. When Mum had her 6 week hospital stay, she too was in a state of confusion and deeply unhappy.

Don't know if I've mentioned this before Stephanie, but Laine's just reminded me. My dear SF spent months and months in hospital before being transferred to the aged care facility. He's been far from thrilled at the transfer, but nothing that endless attention from family couldn't ease The thing that really emphasised to me how much of a prison hospital felt like to him, was his brief physical improvement after discharge, and his decision to refuse any treatment which can't be done in his room. So not thrilled clearly doesn't equal feeling unsafe and out of control. Hospital on the other hand overwhelmed him mentally. I've read other posts about hospitalisation which are quite like our experience, and I'm sure you're right when you suspect hospital's exacerbating your dad's dementia. Hopefully not for much longer x

 

[lilysmybabypup]

Thank you again for taking the time to catch up on Dad and our family.

BE, yes, I know how exhausting these events are for the dementia brain. Just having the family together was more than Dad's poor brain could handle. He starts out the day as fresh as he can be, and gradually flags as it progresses. The hospital stay is certainly a huge upheaval and causing him a great deal of stress. It was the endless hyper business chatter followed by a deep sleep that started this hospital adventure, and is supposed to be delirium brought on by infection and constipation. Given that he has been treated for 2 weeks I didn't expect to see it return as it did on Saturday. Thanks for your kind wish.

Laine5, I have no idea how you all survived a 6 week hospital stay, must have been a trial for everyone. I really see your point about caring at home and it's what I want for Dad but I'm afraid I need to weigh it up against Mum's health and quality of life. A hard decision.

Mamsgirl, I agree wholeheartedly about coming here to catch up and offer a listening ear and helping hand. It's wonderful. I wasn't sure what you meant by your last post but I looked at it over again and think I get it now. While a Residential Home is not necessarily a happy option, it's still not as stressful as a hospital stay and Dad will feel much more settled there than he is right now. Glad you finally got a good sleep, it's a simple but profound remedy.

Thanks all for your wishes and I hope you have trouble-free days.

Stephanie, xxx

 

[starryuk]

Good morning in Oz, Stephanie,

Just checking in to see how you,your dad and the family are doing today. Is your dad still showing signs of improvement? I hope so.

x

 

[Rosie Webros]

Morning Stephanie (well, it's morning here!)

Just wondered how your dad was now as haven't heard for a while. Hope he is improving now and that you are all getting a little bit of rest.

Take care, Rosie xx

 

[Mamsgirl]

Hope your day's been ok Stephanie x

 

[lilysmybabypup]

Hello to you lovely people, thank-you for your concern, it's been an odd and difficult day. Dad has not really improved, he's certainly much worse than when he was at home. Mum went in yesterday because I look after my 2yr old nephew on Tuesdays, she said Dad was awake all the time but hardly ate, and wasn't happy to get anything done like a wash or changing him.

Today he was sound asleep in the bed when I arrived. As I looked at his face I realised how dreadfully gaunt he has become. He's barely eaten for 2 and a half weeks, apart from the supplement drink. I managed to wake him and said I had a cup of tea for him. I called for help to get him out of bed and into the chair. Three of us tried to get him to stand but he couldn't and said he wanted to lay down in bed again. The nurse said he could stay sitting there, at least it was sitting for a change. We propped him with pillows behind, and I supported his side, I kept offering him the tea but he wouldn't have any and fell asleep again. We eventually got him back into bed and he was straight off to sleep again.

Nurse came in and said the dr came yesterday at 5pm, after Mum left, annoying. They've decided they've completed his treatment and can't do any more. As far as I can see, they've done absolutely nothing anyway. He is now on oral antibiotics but took none last night or this morning. They said we can either take him home or put him into respite. The way he is now Mum could never look after him, at least 2 weeks ago he could walk and eat a little, what has happened? Is it hospital or a huge decline? She doesn't have enough care right now to look after him either. We have been churning it all over in our heads all afternoon, wondering whether he would improve if he came home, or put him through the upheaval of respite and see if he improves there, probably not. I think he's also pining for Mum but I just don't know, and he can't say.

If we take him home and there's no improvement it will be harder to get him into permanent care from there. If they do it from hospital it's faster and social worker said a really good place has a couple of nursing home beds available now. We haven't seen it, and there are many closer ones, it's about 20km away on the motorway and Mum could only visit if we took her since she doesn't drive.

I'm feeling conflicted and devastated. I feel that Dad is really pining for Mum and home and in an awful way I would rather we lost him than think of him in a care home, fearful and grieving, wanting Mum at night to be with him, as she has for 61 years. What do we do?

Stephanie, xxx

 

[Moonflower]

Oh Stephanie, this is so sad
It really does sound as if it would be too much for your mother to care for him 24/7
Why not go and look at the recommended respite home which has beds available?
See what you think of it there - hospitals really aren't good places for dementia patients and as you have said, he isn't improving in their care.

If you like the respite place, you could try it - as you said, it would be an easier transfer from hospital. If there and well cared for by people who understand his dementia needs, he might improve enough for your mother to be able to cope with him at home again. If not, then at least he's not in hospital.

 

[lilysmybabypup]

Yes, Moonflower, that is a probably a good idea, my only concern with that is, the available spots are permanent, not respite. If we put him in respite it would be somewhere else and I'm worried that moving him from hospital to respite to permanent care would be too unsettling.

But if we could get respite in the same place as the permanent place it would be easier on him if he does need to stay.

Thanks, Moonflower for your helpful suggestion and concern.

Stephanie, xxx

 

[Moonflower]

The places may be permanent not respite but that doesn't mean you couldn't remove him from there if he improves....

And a bed which is permanently available could be a better option than a respite bed with a ticking clock - you could end up having to move him from respite after just a couple of weeks which might not realistically be enough to be able to judge the extent to which he can recover.

I think you're right to be concerned about repeated moves, really hard for someone with dementia

 

[lilysmybabypup]

How do we stop Dad wanting Mum all the time? How can we leave him in care when he so desperately misses her? My heart is breaking, I'm so dreadfully sad. I want to bundle him up and take him home where he will be loved.