HELP How do I deal withmy husband's fear and distress

[carol-j]

It's so awful for both of you.
He wants 'Home' but the home he wants isn't there - probably the home he had with his parents is what he is searching for.
My mum didn't recognise her own home in the later stages of her Alzheimer's.

Now my husband has been diagnosed with it - God help us in the future - I don't know how I will cope.

 

[paddiwak]

Hello paddiwak, your post has bought back memories of my husband, he was just the same, l know how hard it is for you, do you have any help,
You need some respite, you must have a break from caring, l left it too long then had a nervous breakdown.
Now l have a new life, l miss the man l had before Alzheimers. I think the worse thing my husband did was weeing everywhere in the house, he does the same in the CH, the cleaners are alway shampooing the carpets, thats why it always seems to smell of urine, l used to use white vinegar in warm water for the carpets, it does take the smell away. It is so distressing for you.

Thanks Pamman, good to hear from you. I've read many of your posts and the hard time you had, you just feel as if there is never going to be normal life again. Since our few days away OH has become more confused and belligerant and talking rubbish. After his escapade of last evening (walking down the middle of the road) he went to bed and slept for a while. He woke and decided he was hungry so made sandwich and cup of tea. Back into bed for 15 minutes then when I got into bed he got up and dressed and was going 'home'. I had been wise enough to hide door keys so left him wandering the house knowing he couldn't get out. He eventually came to bed, with his shoes on but laid on top, refusing to take shoes off and get in properly, so I went to sleep and left him to it. Of course these things alway rebound as he woke feeling very cold and ratty.
Took him to doctors re UTI but results won't be back for a couple of days. Doctor gave antibiotics for next 3 days just in case. He felt OH has now gone to next stage (whatever that is) and maybe it's time for a CH, even if it's for a short time to start with. Told him menta lhealth nurse had tried discussing respite care with OH who got very distressed. Doctor said OH is going past the point of making decisions for himself and that I will have to do it.
A friend recommended that we should complete a Living Will, which is something I have been meaning to do so have downloaded the forms. Hoping it's not too late for OH to complete one. Have to discuss this with his doctor.
At least I managed to post most of my Christmas cards today, one bright spark in my day

 

[Jumpforjoy]

My husband reacted adversely to mirtazapine.. I was told this was unusual but it actually made him more anxious and up all night. The mental health crisis ream became involved and he is currently on an antipsychotic which has helped with his mood and also sleeping. I think it has taken away another layer of the person he was but I couldn't cope with his behaviour before. Be strong and ask for his medication to be reviewed

 

[paddiwak]

It's so awful for both of you.
He wants 'Home' but the home he wants isn't there - probably the home he had with his parents is what he is searching for.
My mum didn't recognise her own home in the later stages of her Alzheimer's.

Now my husband has been diagnosed with it - God help us in the future - I don't know how I will cope.

Oh Carol I really feel for you. First your Mum and now your husband. Sadly the long road of hell starts again. Hopefully your husband will have some quiet years, fingers crossed.

With my husband today has been so different to the last three. He hasn't gone wandering and was in bed by 7.30 p m. Hopefully he'll sleep the night.

 

[paddiwak]

My husband reacted adversely to mirtazapine.. I was told this was unusual but it actually made him more anxious and up all night. The mental health crisis ream became involved and he is currently on an antipsychotic which has helped with his mood and also sleeping. I think it has taken away another layer of the person he was but I couldn't cope with his behaviour before. Be strong and ask for his medication to be reviewed

My husband settled down with the mirtazapine after a week or so. I think my problems probably occurred wth going away for three days. Although I felt I needed the break and we were staying with my cousin, I think OH is going to be happier, or as happy as he can be, by staying at home. If I want a break I'm going to have to get him into a CH for a week, if he'll go.
Not sure how Christmas is going to pan out as all my family have decided to come as they feel this will be their last Christmas as a family, with their Dad hopefully knowing them some of the time. Not sure how he will cope with all these extra bodies in the house but we'll make the best of it.

 

[la lucia]

My husband reacted adversely to mirtazapine.. I was told this was unusual but it actually made him more anxious and up all night.

My mother's consultant told me that Mirtazapine is only effective for night time anxiety/agitation at low doses. It works by targeting specific receptors in the brain and when the dose is increased it targets different receptors to those targeted at low dose.

 

[paddiwak]

More nights of hell

Thank you all for your comments and support. The w/e after returning from Morecambe became another stressful one of refusing to come into the house and going off. A neighbour found him one evening at the bottom of our road near a busy main road.I had been driving around looking for him but hadn't found him, I was just on the point of ringing the police when he was brought home. The Monday evening was the worst. I eventually got him back in the house and my eldest son spent 1/2 hour talking to him while I rang the Emergency Team. They asked if I wanted him taking away but I couldn't do it in the end. I, and our family want to have one (probably the last) family Christmas together so I said I would battle on. As he had been complaining of stomach ache I wondered if he was constipated, another scourge of those with dementia. I spoke to a doctor who gave macrogol sachets and suppositories. After another bad day I inserted a suppository to put my mind at rest and hopefully give him a good clear out. Sorry not a very delicate subject. Had clear out but not a great one so I don't think he was constipated, so don't know what brought on that awful behaviour. These last four days he's been as different again. Tuesday evening sat and watched the Royal Command performance, can't remember the last time he sat and watched tv, and we have had peaceful evenings with no wanting to go 'home'. He has even insisted I put the car in the garage as I had been leaving it out knowing I would be taking him for a ride. These extremes of behaviour have got me totally puzzled.

This morning we saw a new doctor at the Mental Health Clinic and I was able to have a chat with him on my own. The outcome is OH stays on the present regime of medication in the hope that he will stay settled. I don't think there is much hope of that with all the family coming for Christmas as I think all the hustle and bustle may be too much for him, but it will be worth it for us as a family and I'll have to pick up the pieces afterwards.
One interesting thing that came from him this evening, which he has never said before, was how anxious and frightened he was when we were driving home from the shops in the dark. That's a new development that I'll have to keep an eye on. Never a dull moment

 

[LadyA]

William used to get very distressed and terrified being out after dark. Paranoia was a major feature of William's dementia. Driving in the dark, he was convinced every car that was behind us held assassins, chasing us to shoot us, or to force us off the road! Every car that came towards us, was going to suddenly swerve and drive into us and kill us.

Try and make sure there's somewhere quiet your husband can retreat to over Christmas. Best of luck. You are doing a fantastic job. I know that when we see no positive results, no matter what we do, it's so easy to be left feeling that somehow, we must be getting it "wrong ". If we could only find the right medication, or the right way of communicating with our loved one, or the right way of managing their care - then things would be better. That's magical thinking. It wouldn't change anything. You are doing the best you can do. Make sure to pat yourself on the back now and then, and say "jolly well done, you!" xx

 

[JenTay]

Reading through the posts on here I can relate to all of them. Hubby has Lewy Body Dementia and we've only just got some sort of order back with a review of his meds. He to kept asking when we were going home and is this our house or is there another one. For a few years he's been convinced next door were out to get him and hid knives to protect himself. A few weeks ago he tried to smash the front door with his walking frame, then use one of my ornaments to smash the front window, he thinks there are fumes in the house and he can't breathe. Thankfully a lot of this has died down but this year has been the worst I've known with him and all the problems mentioned above, I've had with him. What I don't understand is the different "stages", how do you know when they're moving from one stage to the next?

 

[LadyA]

The "stages" are only a very general guideline, and can overlap - or can seem to be skipped, or sometimes a person can seem to go back a stage. So I wouldn't pay too much attention to them. The stages also vary according to what type/s of dementia a person has - some will cause faster deterioration in some areas than in others, and sometimes the person will not gradually progress, but will deteriorate in "jumps", if, for example, they are having slight strokes.

 

[paddiwak]

As I thought, those four nights of peace did not last. Yesterday evening wasn't too bad, just round the block once and was in bed relatively early as he was tired. At least he sleeps well most nights
This evening has been hell. We had some neighbours in for pre Christmas drinks, something we couldn't do last year as he had just come out of hospital. I know I was doing it more for myself than David but I wanted to say 'thank you to these neighbours who have been very supportive through this very long and troubled year. I knew I would probably pay for it and didn't I just. While I was getting dinner ready he started wanting to go home. After dinner we walked round the block twice, in different directions in the hope that he would accept this house as 'home'. He didn't We went out in the car and still he wouldn't accept it. I then refused to go out anymore so he set off on his own. I watched his direction then set off to look for him in the car. Couldn't find him so came home ready to ring the Police when a neighbour arrived with him. In between me watching his direction, grabbing my coat and getting in the car he must have doubled back and gone in a different direction. Just as weel most of the neighbours know his condition.
So medication wise this afternoon/evening he's had 11/2 Lorazapam; 0.5 mg Risperidone; 20mg Memantine and 45 mg Mirtazapine topped up with a Nytol tablet. Desperation stakes had set in. I was trying anything to try to get him to settle. Only hope all this doesn't have the opposite effect of making him sleep but makes him have a restless night. That would be the last straw. This camels back is very nearly broken.
My youngest son, who is staying over Christmas with his family, has looked after his Dad many times so he knows the signs as to when to either take his Dad out for a bit of peace and quiet or take his kids out so we can have quiet time. As I said earlier I know I will have to pick up the pieces once they have gone home. That's when I will be saying to SS that I need respite care before I go under.
I've finished off the last of the mulled wine, wrapped my grandson's presents, so it's off to bed for me and fingers crossed we both have a good night

 

[paddiwak]

Too much medication!

Well we didn't have a quiet night. David woke after 3 hours sleep and spent the rest of the night getting in and out of bed and constantly walking round the house. I had all keys hidden this time so knew he couldn't come to any harm or get out of the house, so I left him to it. It did mean, of course, that I didn't get much sleep either. Eventually at around 5 a m I managed to get him to get into bed (fully dressed) and he slept until 8a m. Today could have been quite fraught as we were both very tired but I kept him busy helping me move furniture, getting bedrooms ready for the family coming. This afternoon, after a dental appointment, I took him for a cup of tea and piece of cake at his favourite cafe, had a quiet evening and he was in bed and asleep by 8.15 p m. Usually he sleeps well so I'm hoping that tonight is one of those nights.

 

[Cathedral Town]

Sexism!

I am beginning to think that a husband with dementia is harder to care for than a wife with a similar malady. Men with dementia seem to be angrier amd more depressive than women. Maybe I am lucky but my wife never seems angry or resentful about her condition. Either way,both of us have to soldier on and I wish you all the best,

 

[paddiwak]

I am beginning to think that a husband with dementia is harder to care for than a wife with a similar malady. Men with dementia seem to be angrier amd more depressive than women. Maybe I am lucky but my wife never seems angry or resentful about her condition. Either way,both of us have to soldier on and I wish you all the best,

Thanks Cathedral Town for your good wishes. Be thankful that your wife does not get angry or resentful. I do hope, for your sake, that this lasts a long time. How I long for some peace and quiet. My husband is only happy when out of the house. I find this wearing as I can't get anything done during the day so have to play catch up on an evening once he is inbed.
Just heard some sad news this evening that his older brother, who has mild dementia, is going to have to have part of his stomach and bowel removed. My sister in law didn't mention the word cancer but I fear the worst. I'm not going to tell my husband anything yet until I know for sure what is going on. He will have to be told something eventually as they were both coming to us for Christmas dinner. This will certainly knock my husband off kilter once more.
Hope you have a happy and peaceful Christmas.

 

[canary]

Thanks Cathedral Town for your good wishes. Be thankful that your wife does not get angry or resentful. I do hope, for your sake, that this lasts a long time. How I long for some peace and quiet. My husband is only happy when out of the house. I find this wearing as I can't get anything done during the day so have to play catch up on an evening once he is inbed.
Just heard some sad news this evening that his older brother, who has mild dementia, is going to have to have part of his stomach and bowel removed. My sister in law didn't mention the word cancer but I fear the worst. I'm not going to tell my husband anything yet until I know for sure what is going on. He will have to be told something eventually as they were both coming to us for Christmas dinner. This will certainly knock my husband off kilter once more.
Hope you have a happy and peaceful Christmas.

Do you have to say anything?
Would he remember that his brother was supposed to be coming for Christmas dinner?

 

[paddiwak]

Do you have to say anything?
Would he remember that his brother was supposed to be coming for Christmas dinner?

Yes Canary sadly he did have to know as his brothers family were only able to be here over Christmas and then they had to go home. As sister in law doesn't drive it fell to me to do an 80 mile round trip every other day to take her to see her husband. The operation was to remove the lower bowel. We are still awaiting the results of the biopsy but the doctor was fairly sure it is cancer. Don is looking much better now as he is able to eat. He couldn't before because the cancer was blocking the lower bowel. The strain is starting to tell on my husband as I've had to sit him behind me in the car as he was getting frightened by all the car lights coming towards him. Unfortunately there was no-one that I could leave him with for the length of time the journey and visiting took. Fortunately, we heard today that Don is getting moved tomorrow to a nursing home in his home town, so it will be easier for sister in law to visit him and hopefully my husband will settle down, fingers crossed. Not that he is calm very often. The only time he is happy is when we are out of our home as, to him, it isn't home any more, this I find very sad and very wearing, constantly looking for 'home'.