Running out of steam!

[Kayla]

I think I'm running out of steam! I'm finding it very difficult now to find topics of conversation and things to do when I visit Mum in her Nursing Home. She took a long time to settle, but now everything seems to be running smoothly and we've sorted out financial issues such as the Registered Nursing Care Allowance and found suitable long term tennants for her house.
At first, after Mum broke her hip, I felt very angry with the lack of pastoral care at the Hospital and the low levels of awareness about dementia from the staff. I even wrote letters to my MP to complain and make suggestions for improvements.
It all seems a long time ago, more than a year in fact, and I think the Nursing Home are doing everything they can to help Mum. We are satisfied with the levels of care given to her.
I feel powerless to do anything else to help Mum. Sometimes I really have no idea what she is talkling about, although at other times she can hold a perfectly reasonable conversation. I play Dominoes with her, but now she doesn't always seem to understand what she is doing. She is always pleased to see me and I think she knows who I am, although sometimes I'm not so sure.
It makes me feel so sad when she is obviously in pain with her rheumatoid arthritis, but she doesn't grumble and she always seems to smile when the nurses and carers come into her room. She enjoys receiving pot plants, flowers and fruit and we can talk about them. It is good for her to have a friend in the Nursing Home and they enjoy each other's company.
Perhaps things will be easier when we can go into the garden and look at all the flowers. I've not taken the dogs for a visit recently, because they take such a long time to dry after their walks. I wish I had somebody else to share visiting with and then Mum would have more social contacts.
Kayla

 

[Skye]

Dear Kayla

It's so difficult, isn't it, when conversation is so difficult.

Are you perhaps visiting too often? If your Mum has a friend, perhaps she would be happy (or not notice) if you missed a few days?

Does your Mum like art? One of John's carers always brings a book of paintings (she has dozens), and they go through the paintings together. I got back early today, and sat and listened, and was amazed that John was able to talk reasonably intelligibly about them.

Another thing he enjoys is looking at old photos, either family or books of old photos of the area.

Just suggestions, but having something to look at takes away the strain of trying to make conversation.

Stay strong, you're doing well.

Love,

 

[Margarita]

Just pop in to say hi , not sure what more to add then what great idea skye has given , sadly my mother at that stage that she can not consecrate so much before she feels sleepy even at day centre they are noticing that her consecration is going when she plays Bingo, it must be so hard for them , sounds like you just being there make her happy so maybe that’s the main thing , just being there for her when you can even thought its hard on you emotional

I think I'm running out of steam!

I know the feeling We are like an engine running out of steam, sometime it us that need the motivation to keep going , hope all of us on TP can give you that xx ((Hugs ))) giving , sending you an energy boost

 

[Grannie G]

Hi Kayla,

I do sympathize with the awkwardness of visiting.

When my mother lost so much of her language, I made `little and often` visits. If she was talkative and I knew what she was saying, I stayed a bit longer, but if she blanked me or I couldn`t get eye contact, I`d leave earlier.

Luckily the home was only a 15 minute drive away, so it was no ordeal if I went for a short while. I don`t know if you have alot of travelling Kayla, but if you have, it would impractical.

Hospital visiting is difficult enough, but nursing home visiting is really hard.

Take care Sylvia x

 

[Tender Face]

Kayla, forgive if I ask this out of turn ... but are you trying too hard?

Somedays I go to mum's and all she can talk to me about is the fact that she's not talked to anyone since I saw her the day before ...... 'Well that's my news, then....' (and not unhappy about it) ...... doesn't bother to ask about mine .... just seems happy I'm there and 'fiddling about' doing whatever .... whether it's five minutes or 50 or a few hours..... OK, it must be different that mum is still 'home' - and consequently always some job or other I can do when I'm there ..... (and then she decides to 'shadow me') ... but 'meaningful' conversation has long since been something I haven't forced ... mum can talk about allsorts of inconsequential things - repetitive, fragmented maybe ... not exactly a two-way conversation ..... if she's not in the mood for talking she usually asks 'Shall I turn the TV up so you can hear it better?'. Bless.

Sometimes I think it is literally 'having the company' that matters, giving her undivided attention is not so important .... .... you're a creative soul .... why not simply 'be' with her and write/sketch for your own pleasure ... and then share that pleasure with her if she wishes to???? And if not, she will have enjoyed just having your company and you will have done something you enjoy whilst providing that 'companionship' - so you each benefit from the time together albeit in seperate ways?

Love, Karen, x

 

[Brucie]

are you trying too hard?

I believe that Karen hits the nail right on the head!

When visiting someone who has dementia - whether they are at home, or in a home - we have to set reasonable expectations for ourselves.

We aren't going to have normal conversations, necessarily - whether or not will depend on the stage of development of the condition.

There's no harm, in some cases, in almost having a script for each visit, and just to run through that each time. The person may not notice. If they do, then adjust the script, move things around, add new things in.

Sometimes just being there is enough.

 

[daughter]

Hi Kayla,

I would nearly always take games, or some activity, when I visited Dad. When he stopped being able to follow a game of dominoes I stood them in a line on their end and he'd watched as they tumbled each other down.

We used to play catch but when that became difficult we would roll the ball across the table to each other. It is difficult to muster the enthusiasm sometimes but worth the effort if you get a smile when the ball falls off the table etc.

Does your Mum enjoy singing? A lot of visiting Dad was taken over with singing to the old songs and he still knew many of the words long after he'd stopped having conversations. It was something I loved sharing with him.

I don't know how much of this is appropriate to your situation but hope it might help. Sometimes the activites were perhaps more for me than for Dad because it helped me to concentrate on something, but I think there is nothing wrong with that if it helps.

Love from Hazel.

 

[stepan]

photos

Kayla

The staff at the nursing home suggested to me that I bring along a family photo album to show to my mother. Even at this late stage of AD - she can no longer make any coherent speech, and can only leave her bed with help into a wheeled chair - I'm sure she can still recognise the pictures by her physical responses to them; and can still recognise me. It would give you more things to talk about to her, even though you may not know if she understands all that you're saying.

 

[lou lou]

Visiting

Sounds familiar. As my mum has no short term memory at all I run out of steam after a few questions.

However I do go once a week and collect one of mums old neighbours who has known her for over 45 years. She's over 70 and the journey while not far in the car is two buses and a ten minute walk either end. So most of mum's old friends and neighbours never visit.

However when I bring her neighbour often she and I would talk about the "old days". My brothers and I grew up with her children so there's always family news to pass on and I find mum will often chip in in these conversations and will fish remarkable things out of the past in the doing so.

Mum's neighbour enjoys her brief outings in my flashy two seater sports car and the visits are much easier for me, mum can still raise a laugh or a smile at some of the goings on we discuss.

The downside is that I have to see our old house each time I go to pick up mum's neighbour (but it gets easier)

Much love to all

Lou Lou

(ps my son and his wife are expecting a baby, due today. Just hoping mum keeps going to enjoy her new status as a Greatgrandmother and mine as a new Granny)

 

[Stimpfig]

Hi Kayla

My mum has been in a home for just over a month. Whenever I went visiting, I could see my mum's desperate need to have a 'proper' conversation and I could feel her struggle through the fog in her brain to find the right topic or words. I found that she, quite unexpectedly, liked to' talk' to another resident at the home who is there on account of her immobility and not dementia. I also realised that it is not easy for this resident to listen to my mum's repetitive sentences and since I have arranged for private full time nursing (trend in India now), I have set an agenda for the nurse to talk to this resident while my mum sits and listens and gets some vicarious pleasure/satisfaction out of it. I tried it out while I was there and it is working well as I can see from mum's expression.

I guess we have got to think of other ways of dealing with every challenge that comes our way !

Now sharing from Germany (just returned yesterday)

 

[Kayla]

Thankyou everyone, for all your replies.
Today I took Mum some flowers and she watched me trim the stalks and put them in the vase. She enjoyed drawing and painting a few years ago, but now her hands are too painful to even hold a pencil. I did bring back a sticker book from my holiday in Cornwall, which she seemed to like, but unfortunately it disappeared. I've tried to find another one which isn't too childish, but without success so far.
She made some rather weird comments today and she seems to think that there are two of me! Mum's eyesight isn't very good and she is hard of hearing, so she sometimes misunderstands whatever is on the television. At the moment I'm not sure whether she is having hallucinations again, or whether she is just imagining things.
This afternoon she said something really strange and then said to me, "I'm only joking! I'm just having you on!"
I don't really know what to think. Sometimes she gets confused by the accents of the staff in the NH, who come from many different parts of the world. Mum has been asked if she would like lemon "mer-ing-oo" pie or "Pluffman's" platter for the next day's meals. I know the staff also get confused and amused by some of Mum's old fashioned colloquialisms such as "wanting to pay a penny" or getting in a "right two and eight".
I visit Mum two or three times a week, so that I'm around to check everything is all right and I'm afraid she might eventually forget me so I want to be with her while she can still enjoy seeing me. I think I'm gradually losing her and it is getting harder for her to communicate. I do appreciate the fact that the carers treat her as an individual and pop in for a chat if they have spare time. It is good that Mum still has a wicked sense of humour and can be a bit cheeky to the nurses sometimes.
Kayla

 

[connie]

I keep some knitting in the cupboard in Lionel's room. This is so on the rare occasion he feels he wants to nod off, I just sit and knit , listening to his music.

He is happy to see me sitting there when he opens his eyes. It has not happened very often, but I am prepared.

 

[Skye]

Hi Kayla

It sounds as if your Mum is content and well looked after in her NH. I can understand that you want to visit as often as possible while she still knows you.

Do you think you were worrying too much? Don't give yourself a hard time. If your Mum is happy to watch you arrange flowers, perhaps that's the answer. Have something that you can do and she can watch or help, rather than try to talk all the time. I know John finds it difficult to concentrate for too long.

At least your Mum still ahs her sense of humour, and that, an enormous blessing.

Just keep on keeping on, I reckon, but don't wear yourself out.

Love,

 

[mel]

Hi Kayla
I understand how you feel
when visiting mum in hospital there were no words....or very few but she was happy to have company.....Sometimes we wouldn't say a word except "hello" or "goodbye"....
Also at home she would often follow me around.....just happy in watching what I was doing.......
Love Wendy xx

 

[Kayla]

Thankyou for your message Mel. I was sorry to hear about your Mum.
I'm trying to make the most of Mum's company while she still remembers me, although she now seems to think there are two of me.
Today, Mum thought the person on the television knew me and she keeps talking about other people being in the room with us, who were called Joan and Joyce. It's a bit creepy, but perhaps she was just confused about the carers who come in and out.
At the moment Mum is in the general nursing section, but if she became very confused they might have to move her into the EMI unit.
At least she is quiet and can hold a conversation, but I really dread her having to leave her friend and be with people who are not able to communicate very well. Mum is looking better physically now and sometimes almost seems like her old self. I never know quite what to expect when I visit.
Kayla

 

[Glad]

Hi Kayla
Yes, visiting can be difficult. I often run out of ideas for things to say and my Mum goes into "black" moods very quickly if the conversation lapses and will start to cry and ask how much longer she will have to endure this. Like your Mum, she is unable to take part in a normal conversation and cannot play games any more. However, I totally agree that singing is a very good idea. Unfortunately, I am not blessed with a very good singing voice so there is a certain amount of embarrassment involved, but Mum loves to sing the old songs and hymns - she can remember more words than I can!! I also agree about photographs and memorabilia. She sometimes doesn't recognise anyone in the photos, but is interested anyway. Good luck. Glad X