Visits getting more difficult

[Feezee]

I wondered if any of you who have family in a care home have experienced this?

As my dad deteriorates I'm finding it more and more difficult to visit. Conversation is almost impossible. He hardly ever has his hearing aids in, and he seems to have withdrawn more into himself.

If I show him something, like a magazine, he just looks at it as if he doesn't know what it is.

He sometimes gets up and wanders off, and if he does talk it just doesn't really make much sense anymore. I can't seem to get his attention or get him to engage and he's happy to sit and stare or nod off. He's not too sure who I am anymore on bad days and doesn't even recognise my face as one he knows. When I tell him about things happening or about his grandchildren, I get little real response.

I've visited twice a week now since January but I'm struggling to stay for more than half an hour these days.

Is this normal to find it so hard when there's been a deterioration like this?

Take care
Feezee

 

[Canadian Joanne]

My mother and I haven't had any real conversation for several years now. I always time my visits with her meals so I can feed her. I then tidy her dresser & closet, shave her chin, take away torn and worn clothing for mending or tossing and so on. I need to do something concrete for her. It's my way of coping since we no longer can talk.

 

[Feezee]

It's good to know that it's not just me!
Perhaps I need to move my expectations along now to the "next stage", difficult though it is.

I like the idea that Canadian Joanne tries to do all the constructive things during that time. Actually today I spent more time talking to the nurse, checking his toiletries etc but I just feel bad about not actually spending that time engaging with him.

What an awful disease this is.

Feezee

 

[jenniferpa]

I found that brushing my mother's hair, or using hand lotion on her hands and arms allowed me to feel more connected when conversation dwindled. Bathing her forehead with lavender water she also liked and a very gently facial. You just have to work out what a person will accept that helps you pass the time. Some people don't like physical contact so that may be out. One thing that never worked for me (or rather my mother) was reading aloud, and that was odd because she was always a great reader.

 

[Feezee]

Hi Jennifer,

The last time I read out loud to my father everyone in the care home could hear as he's so deaf! Desperate to get a reaction I brought in - wait for it - "Fisheries report on catches of salmon in 2009 on Donegal rivers" and read him the highlights of who caught the biggest salmon and in which pool and river! He grew up there so it was bound to work.

A bloke caught 8 salmon in one day and my dad's response was "Lucky sod!" and a smirk.

It also got a bit of a response from a couple of the other residents! Unfortunately that's the only subject that gets him going these days ;-)

He may accept me rubbing his hands - he's never been good on hugs and things so perhaps this will just keep me next to him and make me feel a little better about it. Because this is about me, really, not him. He's quite happy I think!

Feezee

 

[ringo]

hi feezee, i too know exactly how you are feeling i do all the constructive things too, my dad sometimes sleeps the whole time i am there.
i put on music do the crossword,suduko anything really that passes the time, when he is awake i feed him read the paper with him, sit out in the garden and eat ice creams
today we watched wimbledon he rambled on how he wishes he could play which made me laugh i cant remember him playing any sport other than pub games
some of my best moments are just sitting with him and holding his hand. just do what you feel comfortable with and enjoy the good days.

 

[Feezee]

All good ideas. He's still a little mobile but not mobile enough to easily take him to his room to spend a bit of quiet time with him (the dementia nursing home is very noisy and busy in the main rooms).

He also still gets a bit agitated - so will get up and not know why he's got up. Then of course it's difficult to get him to sit down again.
Some visits I spend most of my time trying to understand where he wants to go or getting him to sit down again!

Do you think I need to be a little bit more assertive?

Feezee

 

[Jo1958]

Feezee, hi
The most difficult thing I found when visiting my dad was relaxing, I couldn't because I thought there was a pressure on me to perform, do something, make a difference, 'visit' with him. He was happy and it took me a while to be able to visit on his terms and not mine, sit and be with him, we didn't need to talk or touch or whatnot, it was enough that we were both there, communication happened quietly and slowly.
I can't help you with your visits but little and often might help. Sending you support and a (((Hug))).
Kind regards, Jo

 

[Rosalind]

Oh Feezee you could have been describing my visits to my husband!

I take the crossword/sudoku and just sit there doing them.

Some foods he quite likes - he worked his way through a pack of cherries last time. Conversation is hopeless - I have tried prattling away 'So and so is moving to Australia' type stuff, but it gets no reaction. I have tried taking in photo albums, but he just is not interested.

After a short while, it is quite often him who has had enough, and he gets up and mutters 'Er, I've got to.....' and drifts out of the room. I usually stay for a while, then go.

I think we do these visits because we feel we should be around to take an interest, and I do top up supplies of toiletries etc, but do not think he gets anything out of them any more.

Rosalind

 

[Canadian Joanne]

I do think there comes a point when our visits are more for us than for our loved ones. But we never know what is going on in their minds so we keep going. Sometimes we are rewarded with a smile, an appropriate remark or a song.

I know my mother is well cared for but I still need to see her. That's my need, not hers.

 

[CraigC]

Hi Feezee,

Your post caught my eye as selfishly I'm going through a bit of hard time visiting at the moment. Definitely not just you. It used to be in stages a bad week of visits, but now every visit is hard and I find myself very emotional on way out and home.

Dad rarely wakes and I just sit and hold his hand. The decline has been very very slow and it does not help that from TP I have a good handle on what to expect. It is just getting more and more difficult to handle if I am honest. And many on the forum share these feelings - that is one of the things we are here for.

Back to you

I've visited twice a week now since January but I'm struggling to stay for more than half an hour these days.

I would suggest reassessing your visiting regime, just a thought? It has helped me a little. I no longer do my regimented visits but being honest go in when I feel a little more up. If I go when my mood is low it is going to pull me down further. I also shorten visits if dad is asleep and spend a lot of time asking staff about his needs etc. It is quite often the staff at the care home who help me cope - must thank them more often. Some how they keep upbeat most of the time.

I do think that dad still picks up on my voice and talk to him constantly and perhaps naively feel it gives him some comfort, some kind of familiarity. I focus on smells, touch and talk about people he may remember. But the odd laugh and smile is quite random now. Most of the time he just looks fed up and has had enough of it all - I remember that look from my childhood.

I do think there comes a point when our visits are more for us than for our loved ones. But we never know what is going on in their minds so we keep going. Sometimes we are rewarded with a smile, an appropriate remark or a song.

I know my mother is well cared for but I still need to see her. That's my need, not hers.

Joanne, I think you may well be right, this is just something I find hard to come to terms with. Dad has always been so vulnerable and always felt he needs someone, but in reality the care home do most of the work and you are right it is becoming my need to see dad.

Oooops sorry got back to me again and sorry to hijack, this subject is just close to my heart at moment.

take care and good to talk
Craig

 

[lesmisralbles]

Hello Feezee

My husband was not in a NH.
BUT, M.I.L and S.I.L were.
Just you being there, do not feel you have to make an effort. Spend the time you have together talking to him about past times, if you get a response
If you feel you cannot go every day, every other day, then dont.
Make the day that you do go special, you are the one that has to try now, he cannot. I wish you well X

Barb X

 

[TinaT]

I've just read your post after posting myself about difficulties visiting. When I have things I can do with my husband I find that the time is good together. Craig's idea of revising the visiting is sound as a pound. I feel exactly the same and need to be feeling strong in order to visit. I spoke to the CPN only last week about my visits as I'm always afraid that my visits somehow make his agitation worse. He suggested that I visit less often. I also find that the visit is better if I can have a companion with me but that is not always possible.

It is so distressing to see how little he can communicate and how little he can now do for himself.

xxTinaT

 

[susiesue]

I wondered if any of you who have family in a care home have experienced this?

As my dad deteriorates I'm finding it more and more difficult to visit. Conversation is almost impossible. He hardly ever has his hearing aids in, and he seems to have withdrawn more into himself.

If I show him something, like a magazine, he just looks at it as if he doesn't know what it is.

He sometimes gets up and wanders off, and if he does talk it just doesn't really make much sense anymore. I can't seem to get his attention or get him to engage and he's happy to sit and stare or nod off. He's not too sure who I am anymore on bad days and doesn't even recognise my face as one he knows. When I tell him about things happening or about his grandchildren, I get little real response.

I've visited twice a week now since January but I'm struggling to stay for more than half an hour these days.

Is this normal to find it so hard when there's been a deterioration like this?

Take care
Feezee

Are you sure you're not visiting my husband

Your visits to your dad sound exactly the same as my visits to my husband - I too cannot manage more than half an hour each time. David also nods off or wanders off - obviously our conversation is not scintilating enough!!!

I like to think David knows I'm there and he always smiles when he sees me - but as for conversation forget it!!!

Love

 

[Skye]

Feezee, it's not easy, I know. My John can't walk or talk. Sometimes I'm sure he can understand what I say to him, but I have no way of being sure. The best I can hope for is a smile and a kiss -- and I'm so happy when I get them.

I visit at meal times so that I can feed him. He always enjoys his food, so I enjoy that too.

One other suggestion, which came from the nurse in charge of the unit. I have made a CD with some of John's favourite songs on, and I sing along to them. He loves that, though I'm no singer! The staff use it to, and sing along to it when they are getting him up and washed and dressed. That stops him getting distressed. It's worth a try!

Often, he just sleeps, and I sit beside him and hold his hand. It reassures him to have me there, I think.

Love,

 

[gigi]

It's early days for me in the visiting stakes, but this thread is very helpful..thanks Feezee


If I go in the morning my husband is drowsy or sleeping ..and when I went on Wednesday in the afternoon he was very awake and agitated..which is his usual pattern.

Like Joanne I've spent time sorting out his clothes ...and as this is new for us I've been hanging some favourite pictures in his room.

This is going to take time for me..and like Craig, rather than establish a regular routine of visiting, I'll go when I feel able to cope.

I also find that the visit is better if I can have a companion with me but that is not always possible.

Tina..so far I've found that too..but as you say it's not always possible.

Love xx

 

[gigi]

Neither did I, Kassy.

It may be different for you, but I'm only just beginning to realise just how Eric's dementia is affecting him..when we were together 24/7 I came to accept his behaviour as "the norm".

Now I'm seeing him through different eyes and the realisation is hitting home.

It's very hard.

Love xx

 

[Feezee]

That's it, isn't it.

It's the realisation of it that makes it hard - realising it's happening and not going to get any better (like Craig said knowing what's coming too) and that we have to deal with it in whatever way we can.
And the "loss" and "grief" all wrapped up in it. No wonder we struggle with visits sometimes.

I like Kassy tend to feel it afterwards, rather than at the time. At the time I'm more frustrated, afterwards just downright despairing and depressed.... (and then bitterness as to how family and my father's friends have just vanished into the background).

I'm off on holiday next week so it's good timing to have a natural break. Think I need it!
Feezee