Dad is asking when he is coming home!!

[snooky]

As you know my Dad went in the home for his respite week a few weeks ago, when he was really poorly and mum was at the end of her tether. Well they found a permanent place for him and it meant that he wouldnt be coming back home, but because he has been,and still is, very weak with the recovery from pneumonia, we decided to delay telling him that it was permanent because we were afraid that it would knock him back and he would lose the fight needed to recover. Well he asked my sister a couple of days ago when he is coming home and she explained that he needed to get stronger before he could come home and he said to me today 'Am I going home tomorrow?', because he knows that he usually goes home on a Monday. Believe me I am beginning to question whether, as he does get stronger, he should be in there at all - all different emotions run through you. I know my mum was at the end of her tether, emotionally and physically, in particular with the incontinence which has got out of control. I know that she cannot think about him coming home and that he probably wont. She has her own worries on top as she has recently found a lump in her breast and has an appt through for tests, etc, so we have that to consider as well. It is just very hard, because I know Dad just wants to go home and be in his own surroundings, but that it wont be possible. AD has affected him badly with shuffling, falls, incontinence, short-term memory, but he knows who we all are and we can have conversations with him and he knows what is going on, which makes it almost all the harder when it comes to something like this. I know that he is getting depressed, but his medication at the moment doesnt allow for him to go on anti-d. I said to him today that as soon as he is up to it I will take him out anywhere he wants to go and we could maybe go home for an afternoon. What do you think is the best way to deal with this. After all we cant keep him at the home against his will, but I know mum just cant cope anymore and I work full-time. Any ideas greatly appreciated. On the plus side, however, it means he is feeling better, now he is asking the question, but just how do we deal with it - I dont want to knock him back, not yet.
Sorry for the long post.
Snooky x

 

[Grannie G]

Dear Snooky.

I know how hard it is, but all I can suggest is you keep telling your father he`ll be able to go home when he is well enough. If you chose, you could also tell him your mother isn`t well and needs to make regular hospital visits for herself.

Sadly, he`ll never be well enough to return home, because however much your mother regains her strength, she will not be able to keep it up if she has him home again.

You worry you can`t keep him in the home against his will, but has he the ability to discharge himself and make his own way home? I doubt it.

It will be very difficult for you to keep up this `charade` but it doesn`t sound as if there is any alternative.

Take care xx

 

[BeckyJan]

Hello Snooky:

Firstly I assume your Dad is being allowed to stay in the NH for as long as it takes (?>).

My initial reaction is to look after your Mum - give her chance to sort out her own health issues if you can. Once that is sorted you may find your Dad has settled in the NH.

This 'going home' business is very very strange. My husband is only ever at home, but he still asks 'is this where I live' or 'its good to be home' (when he has not been away). Or, where am I now? So you may find that your Dad will become disorientated wherever he is, in which case he may as well stay where hopefully the care is good and your Mum and you have no worries other than to visit him.

Hope this makes sense.
Best wishes Jan

 

[TinaT]

Dear Snooky,

My heart goes out to you in every way. I am in the same position with my husband who is on an elderly mental health ward at the local hospital, he is just turned 65 years of age. For the first 4 moths he was not allowed off the ward but in late November he was taken off his sectioning and I was allowed to bring him out of hospital and to come home two afternoons each week. Just as you describe your dad, Ken is aware of his surroundings, and knows his family. He is not really able to hold a conversation but tries very hard to. He is unable to concentrate on anything for more than a few seconds and cannot retain any information or look after himself in any way. He has a set stock of comments and questions regarding the family which we have to go through every few minutes and that consititutes our 'conversations'

We have had a very, very close marriage and often have only had each other to rely on. This reliance on each other has now become an obsession and he cannot tolerate life if I am not with him. The visits home have been wonderful and we have shared some quality time together. I have had the pleasure of my lovely husband without the nightmares of coping with his very distressing behaviour full time. Whenever he has shown signs of becoming unmanageable I have been able to take him back to the hospital.

But the repercussions of bringing him home have been hard to bear and I now feel it is kindedr to him not to bring him home as this has fueled his obsessive behaviour. I visit him every day and since his home visits he is always in a terrible state when I arrive. He lives to see me and wants to be with me 24 hours a day. He, begs me to bring him home, asking why is he in 'prison' when he knows has never done anything wrong. The ward staff tell me that he constantly paces around from morning to night and the only time he sits calmly is when I am with him. He also displays typical 'sundowning' behavour which lasts for hours and hours until he wears himself out enough to sleep. He becomes obsessive and in extreme anxiety about other things besides being with me and nothing can stop him, not medicine, me being there, or the staff on the ward can calm him down.

I long with all my heart to bring him home, I really do. But I am so very afriad of not being able to cope. No care package would be of benefit as he cannot tolerate anyone else but me being with him. He cannot go to day care centres, as his anxiety at being away from me disrupts all the staff and other patients, I can't have any respite care as he will not settle and after about 48 hours the staff are so upset by his distress at being away from me that I have to go to collect him or they will send him to the ward he is currently on.

Whilst he is on the ward he is safe, warm, fed and well cared for physically as the staff are well trained to cope with such behaviour. Mentally he is in torment and drugs only take a little of the edge off his distress. I am in almost constant turmoil, as I so desperately want to do the right thing for him. Your mum must be also feeling these emotions I am sure.

I know that if I do bring him home, he will, usually late afternoon and going through the evening and early morning hours, still have terrible anxiety and obsessions which even being with me doesn't seem to control and I am so afraid that if I do as my heart wants and bring him home, then I will have made a mistake which will result in more pain for him in the long run.

There is no easy answer to your problem. I have anguished about the same problem for many months and will continue to do so. xx TinaT

 

[Margaret W]

Hi Snooky and Tina T,

I can't comment on Tina's situation, which must be pretty intolerable but it seems, Tina, that you have tried your best, weighed up the pros and cons, and decided that it is too stressful for both you and your husband to have him visit home. I hope that decision works for you.

Snooky, my mum is more similar to your dad, she doesn't accept that she needs to be in a Care Home (and previously hospital - she has now forgotten that she was in hospital last summer, and denies it). She doesn't remember or accept that she was going out in the middle of the night and thought it was afternoon, eating her tea at 11 a.m. and breakfast at 8 p.m. - and having her evening glass of sherry three times a day! We just had to tell her that the consultant said she couldn't go home, so she blames the consultant and not me. The consultant told her she wasn't allowed to let her go home cos she wouldn't be safe. Of course, she lived on her own, so that is not the same as your dad expecting to go home to your mum.

As with us all, Snooky, we have to weigh up the pros and cons, and make a choice that we don't want to have to make, one way or the other. Having made the choice, we will constantly wonder if we could have done it differently, but the fact is, you make the choice with the information you have at the time.

Good luck with your decision, and remind yourself that you have not taken it lightly, but with care and consideration.

Much love

Margaret

 

[Taffy]

he knows what is going on, which makes it almost all the harder when it comes to something like this

Dear Snooky,

Your situation would be very difficult especially with your dad knowing what is going on. Your mum certainly needs all the strength she can muster right now to face her own ordeal.

Taking everything into consideration concerning your mum and how your dad has being effected by mobility and incontinence problems it's probably the best alternative to have him in a care home. Never a easy decision to deal with.

Take care, best wishes to you and your family. Taffy.

 

[snooky]

Dear all,
Thank you so much for all your replies. You are right, we need to keep saying what we are saying for the time being, especially as mum is going to need our support and cannot cope with anymore stress at this time. We can't tell Dad that Mum is not well either, because I know this would really worry him, so he is best not knowing. Anyway, it might be good news - I hope so. Margaret I hadnt thought about explaining to him that the consultant/doctor said he should stay in the home and this may be a tactic we might have to use. I dont know at the moment, but he is still very weak, so we will say that for now. Its horrible not being able to be honest with him, but it is for his own health at the moment, so we can only do what we can do for our loved ones. Tina, I am sorry to hear of the awful situation you are in and wish that I could offer you some advice, but everyone is different and it certainly sounds like you have no choice in the matter, and this is what happens to a lot of us in the later stages of this cruel disease. We do it, because we care and there just comes a point when I think we know that our loved one needs to go into care full-time, but we wouldnt be human if it didnt cause anxiety, confusion, etc, would we. Its just so confusing at times, especially as my Dad does know what is happening and when I look at him, I cant help thinking that he would be alright at home comfy in his chair, but it just isnt that simple is it.

Thank you all once again for your invaluable support and advice - where would I be without TP.

Love to you all
Snooky xx

 

[mollie1]

Hi Snooky, Our mum went into a care home for respite before Christmas after my Dad had a break down hes now well but it is far to much to take her back full time its such a big ask, she has been home for the day and said it was a lovely place but she says the same about the local cafe we sometimes take her near the home. Being in care means that someone else is doing the caring and you and your mum can have the quality time with your Dad. Take care Mollie1