Not coping

[Practice]

My husband has been in the psychiatric assessment ward of our local hospital for 9 weeks Initially he was admitted under section and has since had this changed to a compulsory treatment order which can be in place for up to six months. . He has been very agitated, trying to get out and there have been a couple of occasions when he was violent, punching one of the male nurses and putting his hands round the throat of one of the other patients. A place came up in one of our selected nursing homes but because of these incidents they refused to take him. He is now having further behaviour assessment and he may have to go to a facility for patients with challenging behaviour. He is still on the waiting lists of several nursing homes pending the outcome

When I visit he seems to be quite settled, but when he sees me he seems to think I am there to take him home and gets upset when I leave. He doesn't look very well, and is going to the toilet a lot. I reported this and asked if they could do a urine test, but they don't seem to have done this. He has also started to put his clothes out of the window of his room and I expressed concern to the staff about this. When I visited today the window of his room, which could open a couple of inches, which enabled him to push some things through, has now been made completely unable to open. I spoke to the nurse in charge and said that he couldn't sleep in a room with no air. She said she was not aware of this having been done but would look at it. I feel that when I raise issues of concern I am being fobbed off all the time. A lot of things have gone missing, including clothes and a good electric razor, but no attempt seems to be made to locate these things. When he was at home he had very bad sundowning and became very agitated and went out walking in the evenings and getting lost etc. I have been told that he is still agitated in the evenings in hospital despite his medication having been increased.

I am feeling very stressed, even more so that when he was at home and wandering all the time and getting lost and having the police involved. It breaks my heart every time I visit and see him looking so unwell and completely unaware of where he is and that he will not be coming home. I am crying a lot and sometimes wish that I had never initiated his admission, although my head tells me that I couldn't have continued with him at home either. Does anyone have experience of this putting clothes and things out of the window and any ways to stop him doing it. Also, what is my situation in relation to having a say in his management in view of the fact that he is under a compulsory treatment order.

I have arranged to go on a five day holiday with friends but am now feeling very guilty about this and contemplating not going as I am sure I will worry about him the whole time I am away although there are several friends who will visit him in my absence. What do you think I should do?

 

[marionq]

Taking the last first - go on holiday and clear your head. The problems are going to be there for a long time and you'll need your strength and objectivity.

The clothes obsession is common even when there is no aggression. I think it's the need to be taking action to go somewhere, anywhere to get away from their own confusion.

The aggression makes it impossible for you to cope. You will have to leave it in the hands of the professionals to get medication right.

Missing items seem to be a frequent complaint. Labelling and looking around when you visit, only including clothes and personal items which can be easily replaced, asking staff for help where you can.

I hope things improve soon. Don't despair. This had to happen.

 

[Beate]

Be pragmatic - if he is in hospital he has no need of his own clothes and can wear hospital clothes instead. If he throws things out the window, it will have to be secured. They have found a solution yet you are saying it is not acceptable? What would you suggest they should do? They can hardly tie him to his bed. Your husband has very challenging behaviour, and they are trying to deal with it by adjusting medication. Give them a chance. You know he needs to be there. Go on your holiday - it might settle your husband more as well.

 

[Casbow]

So sorry for what you are having to cope with. It must be so heartbreaking. But i do feel that you should take your break and let the professionals look after him. There is nothing you can do to change what is happening. Bless him. It is so hard for us to let go. But you must take the opportunity and have a rest. Hope you find him better when you come back.xxx

 

[Practice]

So sorry for what you are having to cope with. It must be so heartbreaking. But i do feel that you should take your break and let the professionals look after him. There is nothing you can do to change what is happening. Bless him. It is so hard for us to let go. But you must take the opportunity and have a rest. Hope you find him better when you come back.xxx

Thank you Casbow I will try to take your advice and have my break I think it is because there is nothing I can do that upsets me so much. I so want to look after him and I cant and I need to accept this

 

[Casbow]

I am able to advise you because I am in a similar situation. I have made the decision for my husband to go into a care home with nursing staff. I am not sleeping, I think all the time perhaps I won't do this, perhaps it will get better. At the end of the day I am mentally and physically so tired so therefore not coping . I still wonder to myself if I will actually be able to do this. Your situation sounds awful and I really feel for you. Its bad enough having to deal with at home but to have to leave him hoping that he is being properly looked after is so much worse. But I have to say that my mum was in a secure mental health unit for 3 months and I was able to visit almost every day because it wasn.t very far away, and she was so well looked after, and they got her well enough to go back to the care home. Try not to worry about things going missing. I know its frustrating but it is part of dementia that the patients wander about moving things. You cannot change the situation with him until he starts to get better, so try really hard to have this break. Also I have to say that things like a urine test have probably been done. Unless you ask them, the chances are it was negative and they never told you as they are so busy and there was nothing to worry about with that. Wish you peace of mind.xx

 

[Practice]

Thank you It does help hearing from people in a similar situation. I will go on my break and hopefully come back refreshed and more able to deal with things

I am able to advise you because I am in a similar situation. I have made the decision for my husband to go into a care home with nursing staff. I am not sleeping, I think all the time perhaps I won't do this, perhaps it will get better. At the end of the day I am mentally and physically so tired so therefore not coping . I still wonder to myself if I will actually be able to do this. Your situation sounds awful and I really feel for you. Its bad enough having to deal with at home but to have to leave him hoping that he is being properly looked after is so much worse. But I have to say that my mum was in a secure mental health unit for 3 months and I was able to visit almost every day because it wasn.t very far away, and she was so well looked after, and they got her well enough to go back to the care home. Try not to worry about things going missing. I know its frustrating but it is part of dementia that the patients wander about moving things. You cannot change the situation with him until he starts to get better, so try really hard to have this break. Also I have to say that things like a urine test have probably been done. Unless you ask them, the chances are it was negative and they never told you as they are so busy and there was nothing to worry about with that. Wish you peace of mind.xx

 

[jaymor]

My husband spent 9 weeks in an assessment unit. For most of those weeks he had his coat on and wandered around with all of his clothes rolled up and tucked under his arms. He never slept. I visited every day and he was always looking through the glass window in the external door. He was not settled at all, wanted to go home, didn't like anything, in fact a complete nightmare for staff and family.

I arrived one day and no face at the door. Went to his room he was not there. Asked one of the staff and they smiled broadly and said he was in the lounge by the dining room.
He was, he was sitting in a chair talking to a member of staff and they were enjoying tea and cake. No coat on and no clothes tucked under his arms.

A few weeks later he was ready for a nursing home that specialised in challenging behaviour and he received 1:1 care for several years. This was reduced to 12 hours a day as he got less mobile.

It is hard, the clothes through the window is not unusual, my husband posted anything that would fit through his. Picture frames, toiletries, newspapers, luckily he was on the ground floor with grass under the window so very little was damaged. He did not do it in the nursing home thank goodness because he was on the 1st floor.

Fingers crossed for you that your husband will settle and can move into a nursing home that deals with challenging behaviour.

 

[Alicenutter]

Oh Practice. I'm with Marion. Go on holiday. I just did exactly that: 5 days away. And you know what? It's true that a change is as good as a rest. My husband too is in hospital. He has been there for two weeks, and this is his third stay in a geriatric psychiatric unit since the beginning of December. While I was away, our kids visited almost every day. I couldn't mentally get completely away - I rang the hospital every morning, and spoke to the kids every day too - but the change of scenery recharged my batteries. As for the clothes issue, it occurs to me that very often a person with dementia will do what he/she can do. In my husband's case, it's 'disrobing inappropriately' (ie in the hospital corridor) often followed by 'lying down inappropriately' (also in the corridor). If it's not harmful behaviour, to himself or others, they seem to tolerate it and try to gently redirect. My husband also has been very violent, initially towards me, which was why he was hospitalized the first time, and subsequently towards hospital personnel. He had to be put in restraints on several occasions. He has not been violent for a few weeks now, whether because if medication changes, I can't say. He has been diagnosed with FTD, and has gone downhill very fast. Six months ago he was living at home, we travelled by air to visit his brother, we went out with friends. Now that seems like a distant dream.


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[Practice]

Oh Practice. I'm with Marion. Go on holiday. I just did exactly that: 5 days away. And you know what? It's true that a change is as good as a rest. My husband too is in hospital. He has been there for two weeks, and this is his third stay in a geriatric psychiatric unit since the beginning of December. While I was away, our kids visited almost every day. I couldn't mentally get completely away - I rang the hospital every morning, and spoke to the kids every day too - but the change of scenery recharged my batteries. As for the clothes issue, it occurs to me that very often a person with dementia will do what he/she can do. In my husband's case, it's 'disrobing inappropriately' (ie in the hospital corridor) often followed by 'lying down inappropriately' (also in the corridor). If it's not harmful behaviour, to himself or others, they seem to tolerate it and try to gently redirect. My husband also has been very violent, initially towards me, which was why he was hospitalized the first time, and subsequently towards hospital personnel. He had to be put in restraints on several occasions. He has not been violent for a few weeks now, whether because if medication changes, I can't say. He has been diagnosed with FTD, and has gone downhill very fast. Six months ago he was living at home, we travelled by air to visit his brother, we went out with friends. Now that seems like a distant dream.


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Thank you so much to everyone. Its so good to know I am not alone

 

[Practice]

Wanting to go home

When I visit oh in hospital, when I arrive he seems to be quite happy, sitting with some of the other patients. However, when I arrive he seems to think I am there to take him home and spends a lot of the visit saying he'll get into his own bed, have a bath and what are we having for tea.. Consequently I spend a lot of the visit getting agitated about how I am going to leave without upsetting him and I am sure he picks up on this agitation. Because he has had several incidents of trying to get out the door when I leave I have an arrangement with the staff that someone will distract him when I am ready to leave but quite often there's nobody around at the time and if I go looking for somebody he follows me. I have tried saying I am going to work, going to get his coat as the weather is bad etc, and sometimes that works and sometimes not. It is getting to the stage that I dread going to visit.

Does anybody have any other strategies for coping with this.

 

[Spamar]

Don't go. Or at least, don't go too often. Most people in his situation don't remember whether anybody has been to see them or not.
It's good that the staff are helping you escape and I'm sure this is just a phase. When it's over, you'll be OK to see him as often as you want. Meanwhile, just phone to find out how he is.

 

[LadyA]

In the first weeks that my husband was in a nursing home, I had a similar problem. I used to time visits so I was leaving when he was going for a meal. Or sometimes I'd pre-arrange with whichever staff member let me in, that a care assistant would come in half an hour or so and take William to the toilet, and I'd slip out while they were gone. One thing I did which I found lessened his agitation because he came to believe that I was always there somewhere around the building "busy" - I never brought my coat or bag in with me. I just wandered in in my jeans and jumper, sometimes"tidying" things on my way in or chatting with other people.

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[Practice]

In the first weeks that my husband was in a nursing home, I had a similar problem. I used to time visits so I was leaving when he was going for a meal. Or sometimes I'd pre-arrange with whichever staff member let me in, that a care assistant would come in half an hour or so and take William to the toilet, and I'd slip out while they were gone. One thing I did which I found lessened his agitation because he came to believe that I was always there somewhere around the building "busy" - I never brought my coat or bag in with me. I just wandered in in my jeans and jumper, sometimes"tidying" things on my way in or chatting with other people.

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That's a good idea When he sees me getting my coat or lifting the washing he knows I'm leaving so then gets agitated so Ill try that next time

 

[MomaLoz]

Hi
If you are going to be wracked with guilt the whole time you are away then I wouldn't go I did that went away when my head was saying go but my heart was saying stay now I can't get over the guilt I feel as I think he deteriorated because I went away and left him in the care of people who didn't understand him

 

[LadyA]

But MomaLoz, Practice can't move in to the hospital and live there.
I think the sense of guilt we get comes from not being able to make things OK for our loved ones. From that feeling that all the love, all the care we have given hasn't been enough to make them better. Of course it hasn't, and really, we knew that nothing we could ever do was going to make them better. But part of us feels that they trusted us to make everything alright. So we feel guilty, because we can't. And of course we don't need to feel guilty. It's false guilt. The famous Guilt Monster, for which we here at Talking Point keep a large stick to hand out to whoever needs it, for whacking the Guilt Monster with!

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[Practice]

You are right Lady A. I have to trust the hospital staff as I cant be there all the time. I have arranged for friends and family to visit every day so they will be looking our for him.