Dad home from hospital, things have changed.

[Duggies-girl]

Dad came home from hospital Tuesday afternoon after just over 3 weeks in hell (his words) He went in for pneumonia, had a heart attack, delirium then a fall, then another fall and stroke and still he was sitting up begging to go home.

Now he is happy as Larry again but does not want to get out of bed, he must as his legs are so weak that he is now on a frame. I went easy on him yesterday but today I made him get out of bed as he has to do gentle exercises. Stand, sit and repeat etc He is eating relatively well now but has lost lots of weight and is sleeping lots.

His dementia has worsened considerably, memory of 10 seconds but still joking and polite. He is still continent but finding it hard to get dressed, not surprisingly as he is so weak. He still has his sense of humour as he accused me of moving the bathroom this morning when he turned left instead of right.

Can he improve at all now he is back in his own home. At the moment he needs 24 hr supervision and I can do this for a while but not long-term. I feel he may end up in a care home which is a shame as he has terminal cancer as well and is probably on borrowed time anyway. Such a shame as he had done so well.

He has no memory of being ill or even being in the hell hole (again his words) and he certainly does not remember that he has cancer.

 

[MaNaAk]

There was a stage where dad was using a walking frame but now he doesn't always use his walking stick so never say never. Although the stick he used the other day belonged to a lady called Barbara!

MaNaAk

 

[Duggies-girl]

There was a stage where dad was using a walking frame but now he doesn't always use his walking stick so never say never. Although the stick he used the other day belonged to a lady called Barbara!

MaNaAk

Haha that made me laugh. Dad has 3 or 4 sticks and whenever I took him out for lunch we would get back to the car and he would say 'where's my stick' and I would have to run back for it and usually I would find it along with his cap which he always wears.

 

[MaNaAk]

Haha that made me laugh. Dad has 3 or 4 sticks and whenever I took him out for lunch we would get back to the car and he would say 'where's my stick' and I would have to run back for it and usually I would find it along with his cap which he always wears.

During the previous visit I left my coat in the hallway of the care home in order to leave discreetly because dad gets unsettled if he knows I'm leaving. Anyhow he was falling asleep in the chair and just as I think I can make an exit I look up and find resident J in my coat! Dad wakes up and the game is up!

Other talking point friends have said that they leave their coats in their car when they visit their loved ones in a care home but I can't do this as I don't drive and dad is only ten minutes walk away.

The things we carers have to put up with!

MaNaAk

 

[KathrynAnne]

I think you just need to see how things go day by day. It could be that once your Dad settles back in at home and gets into a routine he gets back to somewhere near where he was before going into hospital. I am certainly feeling the strain of 24/7 care with my Mum at the moment and am feeling very trapped. It is so difficult knowing what is the best for everyone concerned.

 

[Duggies-girl]

I think you just need to see how things go day by day. It could be that once your Dad settles back in at home and gets into a routine he gets back to somewhere near where he was before going into hospital. I am certainly feeling the strain of 24/7 care with my Mum at the moment and am feeling very trapped. It is so difficult knowing what is the best for everyone concerned.

That is what I think @KathrynAnne I need to give him the time to recover from what has been a truly traumatic event for him even if he doesn't have any memory of it.

It's just the surprised look he gives me when I say he has to take it easy while at the same time he has to make a bit of effort to get dressed and stand up once in a while just to get his legs working properly again and this is all because he has not been well. He is shocked to think that he has not been well and does not believe that he has been in hospital.

Yes a day at a time is what I will do but the 24/7 is certainly a strain but I have to give him a chance.

I was standing outside the toilet door this morning stressing myself out in case he falls while he is in there and all I could hear was bom di bom bom bom doo di doo doo doo. and he is dithering about in there without a worry in the world. No wonder I am stressed. Phew.

 

[jugglingmum]

As I posted when this all began, my mum had pneumonia a few years back and in addition my dau had pneumonia this time last year.

I am not with my mum on a daily basis but she certainly recovered slowly over a few months. She was given a zimmer frame when she left hospital and she used this all the time for weeks, but now happily walks about her flat unaided, and whilst she can't do it now could walk outside her flat with just a stick a few months afterwards.

My daughter is a cyclist, training 6 times a week, and her recovery from a fit athlete was very slow - she does have an underlying health issue (iron deficiency) which meant it was slow, but it did take 6 months to get back to her previous level, so your dad will take months to recover from the pneumonia, I realise he has everything else going on, but I would expect quite a bit of recovery from where he is.

Can you find some level of care short term to help you out, you can manage for a few days or so at this level of stress, but you won't last more than a few weeks. From everything you say your dad is content at home for now, so getting some help in whilst he recovers might help you care for him at home for longer.

 

[marionq]

My husband came out of hospital yesterday after 16 days. He is weak, very pale and very reluctant to stand up. I have already pulled a muscle in my lower back helping him. However I am determined to get him back to where he was. Loads of fresh fruit which he loves, short walks with his two sticks and slightly longer walks in the wheelchair well wrapped up against the cold.

Today I played a CD of 60s songs as part of my therapy and ended up with tears pouring down my face when Alfie by Cilla Black came on. Immediately in my mind I see all these beautiful young men in their sharp suits and ties. I see my friends and myself young and slim and full of hope. Thank God none of us knew the future to spoil our lovely young lives.

Adjustment and adaptation are constants as this illness twists and turns.

 

[Duggies-girl]

As I posted when this all began, my mum had pneumonia a few years back and in addition my dau had pneumonia this time last year.

I am not with my mum on a daily basis but she certainly recovered slowly over a few months. She was given a zimmer frame when she left hospital and she used this all the time for weeks, but now happily walks about her flat unaided, and whilst she can't do it now could walk outside her flat with just a stick a few months afterwards.

My daughter is a cyclist, training 6 times a week, and her recovery from a fit athlete was very slow - she does have an underlying health issue (iron deficiency) which meant it was slow, but it did take 6 months to get back to her previous level, so your dad will take months to recover from the pneumonia, I realise he has everything else going on, but I would expect quite a bit of recovery from where he is.

Can you find some level of care short term to help you out, you can manage for a few days or so at this level of stress, but you won't last more than a few weeks. From everything you say your dad is content at home for now, so getting some help in whilst he recovers might help you care for him at home for longer.

Thank you again @jugglingmum I did read your first post and it was very encouraging. As a matter of fact dad looks a lot better already and is back on the ensure drinks that helped him out almost a year ago when he lost three stone. He hasn't drunk them lately but has drunk 4 today so his body must be telling him that he needs them and that is a good sign.

I haven't got him on the scales yet as he is a bit too wobbly but I think he has lost a fair amount.

Yes I am going to get some kind of extra help because I cannot keep it up. I had a day off today as my brother stepped in for the day, A rare occasion and I think he had a bit of a shock. I doubt that he will be volunteering too often.

Sorry that you are here too @marionq it must be even harder when it is your husband. You must take care of yourself, pulling a muscle is very painful. I pulled one in my chest a few weeks ago and it is still there although not nearly as painful as it was. I can at least breathe now without it hurting so hopefully it will be gone soon and I hope yours goes much quicker than mine has.

 

[jugglingmum]

I did worry ifmy first post when your dad was taken in was a bit over positive, but things have run their course ok so far, so I hope this bit is similar for you.

Thinking about it, mum was recalled some time later for a chest xray, and was near enough back to form by then, as her deafness caused more problems than her mobility when I took her. I think it was longer than the 6 weeks and nearer to 3 months.

 

[Duggies-girl]

I did worry ifmy first post when your dad was taken in was a bit over positive, but things have run their course ok so far, so I hope this bit is similar for you.

Thinking about it, mum was recalled some time later for a chest xray, and was near enough back to form by then, as her deafness caused more problems than her mobility when I took her. I think it was longer than the 6 weeks and nearer to 3 months.

No don't worry I am not expecting great things but it would be nice if he could get back to just using his stick and knowing where he is but I know it will take time. Thanks anyway.

 

[MaNaAk]

Dear Duggies-girl,

I hope your dad is settling a bit.

MaNaAk

 

[Duggies-girl]

Dear Duggies-girl,

I hope your dad is settling a bit.

MaNaAk

Unfortunately not @MaNaAk I had no sleep last night and tonight looks to be the same. Dad went to bed quite early last night but did not sleep, he just called me time and time again to ask where he was. It is very sad and very wearing, then he got up at about 2 am and spent a couple of hours in the chair rambling away quietly to himself. At 4 am I got him back to bed and the same thing happened. He doesn't know where he is, he doesn't recognise his own home half the time..

He has also developed a worrying cough and is drinking a lot of fluid which is good. I am thinking the cough may be connected to the cancer but he seems ok otherwise. I have just got him out of bed into his front room with us and he has promptly fallen asleep.

I think he is frightened of being on his own especially in the dark but then he tells me to turn the light off because he wants to go to sleep. Two minutes later he doesn't know where he is again. I am not sure how long this can go on but at least my husband is here tonight so I may get some sleep.

He is getting the hang of his frame especially last night as he went to the toilet numerous times.

Oh well we will see.

 

[ANITRAM]

Please remain optimistic that he will improve . My MIL had pneumonia and delirium following a two week stay in hospital . She came out of hospital with a walking frame but is now walking slowly unaided ( partly because her walking stick has been confiscated because she uses it as a weapon ! ) and is improving mobility daily . The progress of her dementia is another story !!

 

[marionq]

@Duggies-girl we are at the same stage minus the cancer. John is struggling to get the hang of the walker but his delirium is gone and his confusion back to his normal Alzheimers level. Our main problem now is that he has a bad back, possibly because he slumps now in his chair, and I have pulled a muscle in my back helping him.

We did have a lot of help and advice yesterday from an OT so I'm hoping that will pay dividends. Would a mild sedative help your Dad?

 

[Duggies-girl]

@Duggies-girl we are at the same stage minus the cancer. John is struggling to get the hang of the walker but his delirium is gone and his confusion back to his normal Alzheimers level. Our main problem now is that he has a bad back, possibly because he slumps now in his chair, and I have pulled a muscle in my back helping him.

We did have a lot of help and advice yesterday from an OT so I'm hoping that will pay dividends. Would a mild sedative help your Dad?

That might be a very good idea @marionq I would probably have to get him to the doctors though. I will find out about that tomorrow. He had a shot of whisky in his hot chocolate last night but it had no effect on him. He was in bed for about 10 minutes before the questions started. 'can you come and see me for a minute and tell me where I am'

We have OT coming soon so hopefully they will be of some help. As for the cancer I have no idea what comes next but the cough is worrying. I think I will phone the Macmillan help line tomorrow, perhaps they will be of some use.

What a sorry state for us to be in. Dad is not too bad during the day but evening time he starts rambling. He has always been a quiet man but last night he talked non stop most of the evening and it just went on and on and it was mostly rubbish.

I hope your John improves with his frame. It's the fear of him falling and ending up in hospital again that scares me because that would be awful.

I have taken that on board @ANITRAM but it is the dementia that is most worrying. Hopefully he will settle down soon.

 

[Bunpoots]

I’m sorry to read that you’re having such a tough time at the moment @Duggies-girl

It’s a shame all the relatives don’t muck in and help share the load, but it was the same in my family. I feel my dad may have had a better quality of life if I’d not been so exhausted - as you must be now.

If your dad continues to not recognise his own home I wonder if now would be a good time to consider some respite in a carehome? Just to see how your dad takes to it.

I’m only suggesting this as I feel it stopped my dad having the inevitable back and forth to hospital in his last few weeks and if your dad builds up his strength while in “convelescence” (not sure how that’s spelled!) you might be able to bring him home again if appropriate.

Wishing you both the best and I hope your dad continues to improve.

I’m sorry to hear you’re going through the same @marionq and I hope your back gets better soon and that the OTs input works for you and John.

 

[Duggies-girl]

I’m sorry to read that you’re having such a tough time at the moment @Duggies-girl

It’s a shame all the relatives don’t muck in and help share the load, but it was the same in my family. I feel my dad may have had a better quality of life if I’d not been so exhausted - as you must be now.

If your dad continues to not recognise his own home I wonder if now would be a good time to consider some respite in a carehome? Just to see how your dad takes to it.

I’m only suggesting this as I feel it stopped my dad having the inevitable back and forth to hospital in his last few weeks and if your dad builds up his strength while in “convelescence” (not sure how that’s spelled!) you might be able to bring him home again if appropriate.

Wishing you both the best and I hope your dad continues to improve.

I’m sorry to hear you’re going through the same @marionq and I hope your back gets better soon and that the OTs input works for you and John.

I am going to look at a couple of care homes that are near to us @Bunpoots The relative is not available until next weekend and has only managed one night since Tuesday. It is exactly what I expected. I was promised all sorts of help but I took it all with a pinch of salt.

What I really need is some kind of time line for dad's cancer. If he has months then yes a care home will definitely happen but if it is weeks then I will try to keep him home until the hospice become involved . His cough is worrying though as it has appeared from nowhere.

At least he is still continent, that was always my line in the sand and he is still smiling and extremely polite. He is a real gentleman and says thank you for everything I do so could be a lot worse.

 

[marionq]

How different people are when it comes to helping! I took John out this morning to try a little walk along the path in front of our house. He is really struggling. My neighbour came running out and took his other arm and walked with us back to the house asking what she could do to help. The answer is nothing but to be offered is very comforting. If I can't get John on his feet by Tuesday then day care is probably on the way out.

If you need help from a care home environment @Duggies-girl then that has to be the way to go. We all try to find solutions but sometimes the only answer is letting go.

 

[jugglingmum]

The cough could be related to the pneumonia as well if it hasn't cleared properly I guess?