wife wanting to go home

[nipper]

My wife who is under 65 has been diagnosed with alzheimers and is on rivastigmine patches. She has started packing bags of clothes and other bits that she wants to take home, we are of course at home.

Whenever I say anything or try to put things back she gets cross with me and says we are not at home.

Does anyone have any suggestions as how to deal with this situation as I find it very upsetting.

Thanks

 

[Grannie G]

Hello nipper

As someone who had this every night, I know how upsetting it is and I`m sorry but I doubt you can do much to stop it.

I don`t know if you have heard but this is a common symptom of dementia called sundowning. It usually happens late afternoon, early evening and the call `home` has been thought to be the security of the childhood home.

I`m afraid all you can do is go along with it but try to persuade your wife it might be better if she leaves it till `tomorrow`. Depending on how she is, you could offer to take her `tomorrow` [when by then the moment will have passed] , or let her go `home` and follow her until you eventually meet and you can accompany her back home.

I have heard of people walking their cared for round the block and back to the real home ,when it is accepted.

There is some more information here.

 

[lilysmybabypup]

Hi nipper,

It is so hard just getting our heads around what's happening to the person we love, but all these other situations are thrown at us and it is just plain bewildering. Sadly, it is even more bewildering for the person with dementia.

As Grannie G said, it can be very common, my dad has had Alzheimer's for 7 years and he spent many days wanting to go home, and, yes, he was in the home he built and had lived in with Mum for 40 years.

Trying to reason and get her to see reality could provoke an angry or upsetting response. Of course, it would, when you see something a certain way, somebody trying to convince you otherwise means you must be going mad, so you deny it. That's what I would do too. Try to do as Grannie G said, say things like, "It's almost dinner time, let's eat first and then I will take you." "It's almost dark so maybe we should just wait until morning." Delay the departure but always be happy to oblige and take her wherever she wants to go. Sometimes it works and other times it doesn't.

When Dad started this, he was quite aware and often knew he was being manipulated and it just angered him more. But it is worth a try and is much better than saying she is home, because that isn't what she is seeing.

Hope it works for you, keep us posted,
Stephanie

 

[malc]

is it the present home she wants or if she's gone back in time it will be her childhood home or a previous home,ask her how old she is then that might answer the question for you,just another thought is home the place in our mind before she became ill that seems different to her even though it's the same building.

 

[Carabosse]

Why don't you ask her where 'home' is, if she describes somewhere else then you know its not where you are (if you follow).
I have a similar problem with my mum, but it only seems to happen the night after she has been at daycare (managed to figure that out), because there are many people going about as the daycare is held at a local CH, mum thinks she is still there and wants to come home to me at night, I ask her where she thinks she is and when she explains I calmly tell her she is at home.

 

[nipper]

Many thanks, yes she wants to go to where she was brought up, I will try the points you raised. I am not sure about all the packed bags as consequently she (nor I know where some things are!! She also wants to see her parents who have both passed away. Underneath she is very frightened as her Mum died aged 70 from having Alzheimers and at this stage she is aware enough to know what is going on.

It does prove a struggle though.

 

[Grannie G]

My husband couldn`t find any suitcases so all his clothes were crammed into supermarket shopping bags. When he was asleep I unpacked them all and put his clothes back in the cupboards and drawers.
It was a nightmare.

 

[seaurchin]

Hi Nipper,

I just used to say to my husband that we would go home later or perhaps after a cup of coffee etc.

It deflected the need to go 'home' for while and he was more settled thinking it would happen later.

It was a phase that passed for us but was very trying at times. I found it was best not to challenge my husband over his need to go home even though he was at home. I just tried to go with the flow by using distraction and found it worked for us. I hope you find a way around this.

Best wishes

Sea Urchin

 

[barlow123]

'Wanting to go home'

Hi,

My husband is also under 65 and has Alzheimers and severe COPD. This is quite a common thing in our house. One of our psychiatric nurses explained it to me like this: The person who has Alzheimers/Dementia doesn't like who they are at that moment, i.e. they may be stressed or worried or not feeling well - (My husband paces around and also has sundowning every night!!) - and they want to go back to being the way they were before they had Alzheimers and want to be normal. My husband has advanced Alzheimers but has an awareness of his behaviour, which can be unusual apparently and this is why he wants to go home, i.e. be the way he was. When my husband is like this, I usually take him for a drive, slippers and all and this diversion seems to alleviate the problem most of the time. I hope this helps. Cx

 

[gillou]

Dear Nipper

I don't have ad or dementia, I care for my MIL who has Vascular Dementia. Things are really bad at the moment and I am at my limit, each night just before going to bed I think about going home.
If I did'nt have my son who is 16 and still in school here in france I would get in the car and drive to the ferry right now. When things are bad I think about home, but it is not exactly a place it is a time! A time when everything was easier, when the future stretched in front of you and you had so many plans and hopes.
I don't think wanting to go home when things are tough is part of the illness, I think it is basic instinct.
I think the best thing to do is to tell your wife you will help her pack and you will do the journey together tommorrow, it may seem dishonest in away, but the next morning she may well not remember at all and if she does the urge will not be so strong.
Good luck
gill

 

[nipper]

Following my earlier note my wife is gradually emptying the drawers and we now have over 12 bags full of clothes and other things to take home. She wants me to put them in the car to take them for her. We cannot find things and she she gets quite angry with me when I start looking through the bags. Last night at about 9pm she put on her coat and shoes and wandered off and I cannot reason with her as she wont talk to me. I am getting to the end of my tether as I cannot cope with this behaviour. Other times I must add she is perfectly normal. Do you have any advise on what I should do please?? Thanks

 

[Grannie G]

Hello Nipper

I did manage to unpack my husband`s bags when he was asleep so they didn`t build up. Luckily he had forgotten about them by the morning .
Is there any chance you can do this? Can you put your wife`s clothes away while she is sleeping?

It still sounds like sundowning to me, especially because it happens in the evenings. I haven`t found any way to get round it and I really do know how distressing it is.

I would contact your wife`s dementia doctor and ask for help. It`s all I can think of, I`m so sorry.

 

[nipper]

Grannie G Many thanks, I feel as though I need to do something before it makes me ill. We are surrounded with bags and everything seems to be my fault as though she doesnt trust me, it is so difficult to deal with.

 

[LYN T]

Nipper

I just had to respond.My OH was the same about wanting to go home (to Birmingham-he left there whwn he was 18 and is now 66). Luckily I could distract him-no petrol in the car at the moment,no trains etc and he didn't pack his bags. What worries me is that you appear to be at the end of your tether.Forgive me for asking, but do you need a break-some respite arranged perhaps? Perhaps a call to SS's or the CPN could help?

Please carry on posting and let us know how you are feeling.

Take care

Lyn T

 

[Grannie G]

Sadly she doesn`t trust you Nipper because she doesn`t know you when she is in sundowning mode.

You do need help. Help won`t come unless you ask for it so you really must ask. If you become ill your wife will be in an even worse state than she is now.

Have you considered phoning the Admiral Nurse Helpline? Admiral Nurses are there for the carers and even though there aren`t enough around, they can give excellent advice over the phone.

http://www.dementiauk.org/what-we-do/admiral-nursing-direct/

Good luck and let us know how you get on.

 

[lilysmybabypup]

Grannie G Many thanks, I feel as though I need to do something before it makes me ill. We are surrounded with bags and everything seems to be my fault as though she doesnt trust me, it is so difficult to deal with.

Nipper, it is thoroughly exhausting, I know. Dad didn't pack bags but he would get quite angry and accuse Mum of locking him in "this jail". I would get frantic phone calls from her, speaking in a whisper so he couldn't hear her. I was 10 mins away and drove over all the time to try and defuse and distract, not always successfully. Yes, it becomes overwhelming and Mum was a wreck.

It helped to be aware of any warning signals, often Dad would very calmly and rationally start to stand up and say, "Well, I can't hang around here all day, I'd better get on my way." Alarm bells!! When he worked he always had a shower after work and before his dinner, so I would be there around that time to help him shower before dinner. It usually helped to just interrupt the time he might start being anxious by doing something from his old routine, then he would sit for dinner. Not always successful since he also started it mid morning or lunch time. When it just became too much for Mum, we discussed it with his geriatrician who said this is his feelings of anxiety being played out and if the anxiety was controlled it could stop. She put him on an extremely low dose of a medication called Risperidone, actually an anti-psychotic, the use of which splits medical opinion. Some believe all behaviours can be managed with the right conditions and handling but sometimes it simply wears you down. It was 2 months before it had any effect but he did become more passive and content and it all stopped. It may be worth discussing with your dr, although I think GP's are even more wary. There are some possible problems with these drugs, although this is a newer one, but if there is any history or risk of stroke or a heart condition it would not be suitable.

Eventually this phase can end anyway but it's anybody's guess who would survive it intact, you or your wife.

All the best, Stephanie

 

[nipper]

My wife still continues to wander, which is most upsetting as she doesnt say where she is going or when she might be back.

Just recently she has wanted to see her mother and take her plants etc, her mother passed away some 20 years ago. I am finding this most difficult to cope with despite trying to change the subject, I have told her in passing that her mother has passed away but obviously either doesnt believe me or doesnt accept it. Any suggestions please? Thanks

 

[lilysmybabypup]

Nipper, it often can feel like the best thing to tell someone with dementia that the person or place for which they yearn is long gone. Generally, this upsets them further, it's important to remember that their reality is not our reality. Wanting home or a parent is seeking escape from the confusion and fear, where everything seems wrong, and they want the security and feeling of being who they used to be.
Perhaps when she needs to go out and do these things you could take her for a walk, saying you're going where it is she wants. You could do a big loop and end up back home, and she may forget where she wanted to go because she's satisfied the desire to just "go".
Otherwise, is your yard secure, can she just get outside to the back safely and walk around there? It can be enough for her that she got out of the door and outside and she can wander out there until she settles?
I know it's hard, Dad was the same too but he doesn't seem to do it any more, although he was never just a wanderer, he always needed to get home because his mum would be worried. Please don't tell her her mum has passed because that can be so upsetting for her, just try Little White Lies, saying her mum is out at the moment and you can visit her tomorrow

Caring is such a challenge, isn't it? You poor thing.

Stephanie, xxx