I'm such a coward

[Libby]

There are times when I feel a total and utter failure as a daughter.

Went to see mum in the home yesterday during my lunch break, and when i got off the lift, she was standing outside her room with a t-shirt and 2 jumpers on (it was about 26 degrees!!) She also had a bundle of clothes rolled up under her arm,and as soon as she saw me assumed I had come to take her home. I managed to get her back in her room and to take off at least one of her jumpers, but she just kept going on and on about going home. I tried to remain calm, and just kept repeating that she was just going to stay there for a while and that I couldn't take her anywhere as I was going back to work.
I thought I'd distract her by saying that we'd go and sit in the sun for a little while and took some drinks out with us. She seemed to enjoy it for about 5 minutes, but then she started going on and on again about going home. When I said we'd go back in she was adamant that she wasn't going in there - 'I don't like it' In the end I just got up and said come on and thankfully she did follow me.
Once I got her in the room I managed to get her to play a game of rummikub and i nipped out to the nursing station to let them know that I might have a few problems when I left. But when I said that I had to go back to work, she jumped up got her bag and started to follow me out.
I felt really freaked out as I didn't know how to handle her (She's always been a stubborn person prone to mood swings if you didn't do what she wanted) To be honest I just felt as if I wanted to escape.

Then today, I got a phone call from the home to say that they'd had to move her into the EMI section of the home as she was trying to leave. With the excessive heat, they've got the doors open so that the residents can sit outside. I felt that I should really go and see her, nut I just felt as though I couldn't cope with it today. I phoned the home back a little while later, and they said that she had settled down and was helping the carers to set the table. They were just going to wait a while and when she was really settled, they were going to move her back upstairs to her room.

I'm thankful that she calmed down, but now I'm wondering what she's going to be like when I go at the weekend. That's why I feel such a coward cos I just don't know how to deal with her. My brother seems to have the knack to calm her down and thankfully the home normally call him first. I don't know whether to leave it for a few days before I go in or whether I'm just chickening out.

I'm sure once I've had a good sleep, I'll feel able to cope tomorrow, but if anyone out there has a parent whose whole life is consumed with going home, then being terrified of being on their own, I'd be grateful with tips on how to deal with it.

Freaked out Libs

 

[Kayla]

Dear Libby,
My Mum was happily settled in a care home but had to transfer to a nursing home when she broke her hip. She cried and tried to escape by climbing out of bed, and trying to walk out of the home. It has taken four or five months for her to settle down. She is now confined to a wheelchair, but seems to like and trust the staff. We really didn't have much choice, but to keep her in the NH as the care home couldn't cope with her physical or mental needs. Mum does seem to be in a world of her own, but it is a much happier one now than it was at first. The staff might give you advice on how to calm her down and eventually she will be better.
Kayla

 

[Áine]

Hi Libs ............. my dad has talked about going home every day since he went into care in February this year. Sometimes it's worse than others. This evening when i visited he was quite convinced that he was going home tomorrow. When i went down to his room the drawers were open, videos and books off the shelves, TV unplugged, all ready to go home. He talking about being so glad to be leaving because the nh is so awful, and his greatest joy being that he knows he will never be coming back there. Oh s**t! Full day at work, 2 hour drive back in boiling hot car to see him, tired out.

There's times when he reminds me of my mother, sooooooooo critical and nasty about other people .... that's how he was tonight ..... and I just hate him. I'm sorry. I love him as well and I care about him, but I also hate him. He was sending me off home 2 minutes after I arrived so that I could come back tomorrow and take him home. My plans for tomorrow are (for yet another weekend) to continue with trying to clear out his house so we could sell it. Yuk, major guilt, major p****d offness that it's forecast lovely weather and I'm going to be there sorting out all his junk.


There's no way he could cope with being on his own. He couldn't when he went into care, and he's deteriorated quite a lot since then. There are quite a few people in his unit that talk a lot about going home. Staff tend to fob them off/settle them by saying things like "it's late/cold/too hot/whatever ... stay with us tonight" ...... "stay with us for a few days and then we'll see how it goes" ..... "oh, we were just going to get tea and biscuits, stay with us for that" etc. It's more difficult with dad because he's deaf so he can't even hear any of those replies.

Please don't feel bad about being "chicken" ....... it's not always wrong to run away for a while ....... sometimes we have to do that for self preservation.

hugs

Áine

 

[Libby]

Thanks to you both - mum's been in the home since dad died last March, yet there's days, when she thinks she only got there that morning. After she'd been there a few weeks, she got friendly with one of the other residents and she did seem more settled. Sadly she died a couple of months ago, but at the same time mum became friendly with a new man! Goodness me - he was going to go home with her and stay - they were going to get married etc etc. We were just pleased that at least she was talking to someone.

Sadly, he's not well and has been moved into a hospital - so now mum has no-one close to her and that's when she gets unsettled. But she won't join in with any activities and she's not the type of person to be persuaded.

At least I don't have your travelling Aine - the office is only 5 mins from the home, and I only live about 15 mins away. I know what it;s like clearing the house as well - went through that last March (nice cool days!!) - there were 4 of us doing it and we were still there for 3 weekends.

Still debating as to whether to go in tomorrow or leave it until next week. She thinks I never go in to see her anyway!

Thanks again

Libs

 

[Áine]

Still debating as to whether to go in tomorrow or leave it until next week. She thinks I never go in to see her anyway!

do what feels best for you Libs ..... she will survive it

 

[LindaD]

Going home

All very familiar - Mum died 3 weeks ago, but when she went into hospital just before that I had to get the nurse to stay with her cos she was trying to get out of bed, drips and all, to come with me.

Since being in the care home (in dementia unit) all she ever wanted was to come home and we felt really bad as there was no way and we cleared the house out without telling her in order to sell out and she was always saying we were not to sell the house. In the end we just had to say of course not Mum.....

Mostly she was convinved that she was only in the home to look after my stepfather who has had a stroke and is in a wheelchair. She never acknowledged her own memory problems and inability to look after herself.

It was a pleasant surprise that after her death a lot of the staff at the home really miss her and told me how well she had settled in - it never seemed that way to us and I suspect we were the catalyst for a lot of the going home stuff.

I also notice how much of a recurrent theme "going home" is from the other residents on the unit as well.

 

[Áine]

I also notice how much of a recurrent theme "going home" is from the other residents on the unit as well.

oh god yes, isn't it just. The one thing in dad's nursing home that seems to spark some life and community spirit between the residents is when one lady starts singing "show me the way to go home" ........ on the surface it looks like they're having a good time singing away together ...... but on another level i find it heart wrenchingly sad.

 

[Libby]

Well, I didn't go in as we were having friends over, and If I'd gone it would have been close to lunch time and that seems to be the time when she's most restless.
I do feel a bit guilty, but it's a long time since I had a weekend off so I deserved it.

I've decided that instead of going in my lunch break, I'm going to call in after work. She'll have had her tea by then and will no doubt be in bed!

My brother called at 5 yesterday and she was in bed with her clothes on and asleep! It was about 28 degrees and their rooms are roasting. When it starts getting a bit later, she starts worrying about staying at home on her own and it's easier to convince her to stay at the home for a while.

I've tried in the past telling her that we've sold her house and that she has nowhere to go and sometimes she's OK with this, other times she gets upset, but then 2 minutes later she's going on about going home and the previous conversation has been forgotten. The worst thing is when she asks if she can come and stay with us and say's that she'll sleep on a chair!

anyway they're going to take another urine sample just to check that everything is OK.

There are quite a few of residents who talk about going home - just have to hope they don't form an escape committee!



Libs

 

[mel]

Mum always wanted to "go home" even when she was at home!!!

 

[Áine]

Mum always wanted to "go home" even when she was at home!!!

thanks for reminding me of that Wendy ...... my dad did too ...... that was part of the issue when I really realised there was something wrong with him. I think it really is about wanting to go back to a time where everything felt safe and made sense. The home he wanted to go to was the same place 30 years ago when my mum was around and he was at work and it was all ok (from his point of view anyway!)

Libs - it really should be OK to give yourself a break. Try to not spend too much time feeling guilty about it. Either go and visit and make the best of it, or give yourself and rest and enjoy it. Try not to stay away and feel bad about it ..... that doesn't do anyone any good (I should know, I've done plenty of it )

 

[Dave W]

Mixed messages

It was a pleasant surprise that after her death a lot of the staff at the home really miss her and told me how well she had settled in - it never seemed that way to us and I suspect we were the catalyst for a lot of the going home stuff.
QUOTE]


Linda hit the nail on the head for me here. The staff tell me Mum's really happy. A couple of times I've phoned when I couldn't visit (or face visiting, I'm honest enough to say), and caught of guard she's been really chirpy and sounded happy. When we visit, we get the 'I'll be going home soon' mantra over and over. Every visit, I come away glad she's being cared for you, and glad I've seen her (somehow we manage to have a smile about something at some point), so I'm glad they we go, but I do know exactly how you feel.

From experience, surviving this (for us) is a combination of reminding yourself she's somewhere safe and is being looked after, reminding yourself that things would be far, far worse if she did go home (neither her, I or her neighbours would cope at all - that's why she is where she is, after all), and trying to focus on the good parts of the visit when they happen. The situation isn't great for anyone, but remind yourself that it could be worse if she weren't in the hands of experienced, full-time carers.

I do hope you're feeling better than when you posted.

Dave

 

[rummy]

sorry....this is long

Mom also wants to "go home" but still lives at home. I have often wondered why this happens. I think no matter where she lived, she would do this and can only guess that it comes from being insecure, anxious, and confused about their surroundings. Nothing is in the right place.....she has forgotten where the rooms are......etc. It could also be that she is really not happy because she knows she is askew and just wants to go to that place where she can be whole and happy. She isn't sure where that is. It is almost like a homing beacon implanted in their soul or something !
One thing that I have been doing is helping. More and more I am using the validation technique of talking to her and I am finding it effective. It isn't that Mom really wants to "go" anywhere. She just isn't happy and very confused and she wants others to take her seriously.
I get eye level with her, look directly at her, & talk in a low smooth voice. If she is figeting with her hands, then I do it too ( makes her feel normal), if she paces, I pace with her, etc. When she says " i just want to go home" , I don't say, "you can't, or "you are home" etc. I say
" What does your home look like"
" You were very happy there, wern't you"
" Is there ever a time when you don't feel like you want to go home"
" Tell me about the people that are at that home"
(if it is a passed loved one)
"You miss them very much don't you"
You can ask them anything except "WHY".....they can't answer why.
It gets to the root of what they are really feeling or thinking. They feel like they are being taken seriously and validated as a person.

My Mom had a horrible episode recently and I was able to talk her down with this technique. It was pertaining to the strange men that keep coming into the house, not going home, but it worked.

For more on this subject, read "The Validation Breakthrough", I am finding that the more we get into AD, the more I am relating to it. I am reading it for the third time!

I hope I haven't gotten too long winded here, and certainly hope this helps.

Debbie

 

[HLon]

hi Libby and others,

it's natural to feel guilty about not feeling like you have the strength to visit your mum - that's ok and you wouldn't be normal if you didn't feel that. I wonder if you need to think about when's best for you to visit eg sometimes probably you've got the energy to cope with anything, but other times when you're feeling more fragile you might need to plan for when mum's likely to be doing better, and when you're likely to feel better. During your lunch break might not be such a good time in terms of this being when you need a break, and in terms of then having to bottle up what's happened in order to press on with work during the afternoon - you deserve to have some padding around your visits. These are just ideas/thoughts.

The other thing that strikes me is how hard it is to get someone with dementia out of a rut when they get stuck on a topic. Sometimes even one's best attempts to do something completely, even dramatically different, can be scuppered. It sounds like you handled it really well by alerting the nursing staff.

Also, I think we all have different strengths and weaknesses in dealing with patients - partly this has to do with our previous relationship before our parents were ill, partly to do with who we are. There may be things your bro finds really hard and thinks you're really good at, even if it seems that your mum's calmer with him.

Hope you've benefited from a weekend off.

Helen

 

[LindaD]

Time for yourself

It is only just 4 weeks now since Mum died unexpectedly and as some of you know I have my own health issues at the moment. I still find myself visitng this site (and still contributing!!) - and what I wanted to say is not to be afraid or to feel giulty to take time out for yourself.

I loved my mother dearly and miss her dreadfully but I can remember the numerous times when I really had to steel myself to visit, times when I hated going knowing all I would get would be the same circular conversations and fixations on one subject that would be so hard to turn around. I would often end up frustrated and cross - taking it out on the next person who came my way - and in tears!

My 26 year old son works with kids in care with educational and behavioural problems and he was absolutely brilliant with Mum, has so much patience, could make her laugh and distract her far better than I ever could. He is a gem!

We had only moved Mum and stepdad closer to me in April and at the end of May she died. We couldn't have forseen that but it did mean that I saw her more often in the last few weeks than I had for a while previously and she got to meet her great granddaughter for the first time and these are now the last pictures we have of her with Chloe. (Mind she though that Chloe was HER grandaughter not mine!)

What I am trying to say is that you and your well being are equally as important.

 

[Libby]

Thank you all for your replies. I've decided that I'll still go in and see Mum twice a week, but I'm not going in my lunch break any more, as that seems to be the time when she's most distressed. I'm calling on my way home, and after 5pm, she starting to worry about being at home on her own, so it's easier to convince her that she may as well stay at the home for a couple of days.

From the beginning, I've always known that she's far better off being in a home - she was spending all day at home phoning round family and friends to see who could stay with her that night - it was consuming her whole life, this constant fear of being in the house on her own. It's still there, and sometimes when I sit with her, I can see that she's twisting her hands together, biting her lip then she'll come out with "I don't want to be on my own tonight' She seems releived when I tell her she can stay at the home, but a couple of minutes later, it all starts again.

The other thing that strikes me is how hard it is to get someone with dementia out of a rut when they get stuck on a topic

Too right Helen - with mum it's all about going home, being on her own, and that my brother hasn't been in to see her for a long time (He goes more than any of us!)

Does this 'I want to go home' stage ever finish?! Will she settle down?! God - I wish I knew

Libs