How do you keep in contact?

[DistancedCarer]

I'm in a similar situation with my MIL - she doesn't recognise anyone at all any more and on top of that is in a different country too (lives with her daughter my husband's sister). So for a while Skype helped, but to be (brutally) honest, once we see my MIL for a few minutes, that's enough for us really, otherwise we would just be watching her having lunch (being fed) or staring into the distance. So now my husband says if/when he does make contact he realises it is more for his own sake (e.g. to assauge guilt, or to show some interest). So he is doing it less and less. I think sending cards etc is a very good idea. One of the things that make me feel better, is that I engage with and visit the elderly lady opposite me who lives alone and has early dementia. I think that seeing someone else is doing it for our mum, so I'm doing it on behalf of someone's child in return, and my neighbour's children are very grateful as they can only come once a week (she has carers is 3 times a day and I opportunistically pop in when the carer arrives and is busy setting up). A win win situation really.

[DistancedCarer]

Just re-read my post (should have previewed it!) and it seems quite harsh but I can't help but wonder whether one of the effects of this illness for those who observe the progression isn't taking leave of the person in small incremental stages, as the illness becomes more advanced. For a long time my husband was able to really bring his mother out by "becoming" her brother and chatting to her about school and when they were little, mentioning the town she grew up in etc. He would make things up and that would set her off and she'd happily reminisce. But sadly all that is gone now.

[zoflora]

Hi, I live 140 miles from my mum and when she first went in a home rang her twice a week. The home are brilliant as they transfer the call on the main switch board to a mobile phone which they take down to the dementia unit.

this worked well for a number of months then mum deteriorated and found it difficult to hold the phone and with her being deaf didn't help matters. We are now at the point where I cannot phone mum as she has no comprehension of what a phone is. However I telephone the home everyweek to see how she is.

My brother lives in Australia and we had put plans in place for him to Skype (the home were going to get a laptop for relatives to do this) but again mum has deteriorated so it would be more confusing for her.

I don't see any reason why you can't use the phone, do they have a telephone on a trolley that they could push to a patient room or could you suggest this?

Nothings lost by asking. Hope you find an answer.

[chez]

I've read all of these posts with interest some really great ideas, it must be so difficult being so far away from loved ones. I think the idea of cards with photos and letters on pretty paper is absolutley perfect, how about a pressed flower from the garden or if you have a laminator you could laminate a full A4 page for her to put on her wall or use as a place mat.
I am at the other end of the spectrum as my Mother in Law (who was diagnosed with Vascular Dementia almost two years ago) lives just 10 mins drive away, in her own home, and expects us to "pop in to see her" every day. If we miss a day she phones us to see if we are alright! She is coping very well with day to day tasks, medipaks, prepared meals, homecall etc, help to maintain her independence and we have been paying all of her bills for just over two years, so she owes us quite a lot of money, a fact which has totally gone over her head! We're in the long process of getting Power of Attorney, to be able to retrieve what she owes us, and in future pay her bills etc from her account. I mentioned to her that she owes us about 4 grand and her reply was "hard cheese"......what can you say LOL

[marisarose]

Hello there, just a quick comment about what we did when my dear Mum was in the nursing home. I had large signs around the room with 'WE LOVE YOU MUM' and similar loving things. Also I put photos on the wall randomly so that she could look at them if she wanted (however, I have to say she usually would look away if I showed her a photo album). Also I put a huge poster at the end of her bed showing blue sky, beach, palm trees etc. so she could see it when she was lying in bed (ebay are good for these). Remember, it's what you don't do that you always dwell on when they have gone, not what you have done for them - the guilt is the worst thing even though I always did the best I could, as there will always be something you regret - that's just life so don't beat yourself up about it but make sure if there is a decision (shall I visit/phone/write?) always choose 'yes'. Thinking of you.

I live a plane ride away from my M and she went into a home at the beginning of this year. I have visited a couple of times but when I have phoned to speak to her, it has been tricky as the call couldn't be put through to her area and a carer has had to ring me back.

Prior to M going in, I rang regularly (sadly we never had 'a phone every day' mother/daughter relationship) despite the calls being disjointed, M going off midway through call (dementia related) and not listening to little bits of news and being negative mostly (personality/dementia related!).

Part of me (and this is awful) doesn't want to make the effort to make these difficult calls but my OH is gently trying to get me to phone regularly again as I may regret it in the future. Also there is the risk of M forgetting who I am quicker, as we know I will only be able to visit once or twice a year.
Part of the problem, I know is my inability to not ask questions. No matter how innocent they are!!! M gets edgy or disappears to find the answer. I try chitchat but it's often met with silences or a complete change of subject and we can't even talk about the weather without me being wrong. Consequently my OH gets it in the neck after most calls with 'I said this ...... And she said that ....... And you'd never believe what she said to that.....'!!!

Please can people share with me how they keep in contact on the phone to their relatives in a home..... I get the feeling I would be blocking the home line for more important calls..... Although in the past calls were sometimes only a couple of minutes. Are you 'allowed' to phone your relative on the home telephone.
I believe the non-dementia area of the home residents can have phones in their rooms but I can't see this working for M. She would use it at all hours of the night to ring her friends to take her home.
What do I do?

[jessibee]

I think that sending cards, letters and photos is a good idea, and if you put people's names on the photos and the relation they have to your mum it would help the staff to be able to name whoever it is and talk about them and to recognise that she is not just a person in a vacuum. My dad would read the post several times a day not knowing he'd already done so, and anything like this would be a joy each time, and actually was remembered. I was lucky though because he didn't get as far as full blown dementia, although sometimes he was pretty poorly.

This next bit souinds a bit preachy, and I'm going to say it anyway: Whatever happens don't spend too much time thinking about it and blowing it all out of proportion (I hate washing up, and do that, putting it off for ages, then, when I do do it, and it only takes 10 minutes!), so just give things a go and do them. Ask for some advice from the home as well to see if they have any suggestions about what she might be interested in. That could be helpful - and ask them about the phone, please. If they say it's a nuisance, ask why, and what they would suggest. There may be better times to call, and they may be able to tell you what other relatives do.

Do you knit - make her some gloves, or a teddy, or crochet a heart, and sew on a tag with who it/they is/are from so the staff can repeat over and over who it is from.

I know it's already been said, and I strongly agree that you do have to enter her world, and me and my dad did do a lot of reminiscing, often prompted by me... It meant I learned more about him than I had previously known, and I could then use it as a distraction tactic. I got to hear the same stories over and over, but that's the nature of it. One day you will miss having that voice there, so just take a deep breath and go for it.

Another thing we found really useful was that dad also had a small photo album with pictures of the family at birthday parties, and his house (all labelled) which went with him to hospital every time (made the staff realise he's a person with people who care, too, not just a patient). It gave us something to talk about, too.

Good luck, and try and involve the home in all you are doing - they are meant to be helping your mum out as well as caring for her needs. It might help you to set a time and day when you do this, too, so that it doesn't overshadow your whole time. I hope it goes well for you - I know the anxiety can take over. Best of luck.

[OurMargaret]

Just a quick tip. Especially around Christmas you can buy a set of small wooden pegs in red or gold especially designed for hanging Christmas Cards. They are perfect for hanging stuff and are also decorative. I bet you can still find them now. Buy 2 or 3.

Now I'm going down to get more beautiful cards for my sister.

[strawberrywhip]

MIL was in a home about an hours drive away so we could get down and see her...talking in the past tense because she passed away at the end of march.
Even seeing her weekly, because her memory was so poor she forget we had been. I found it was therapeutic for us as well to make little photobooks for her...some from old photos, all labelled with names and what was going on..as though you were making a book for a toddler.. a few words so the nurses at the home could talk her through them. It made us feel as though she was still in touch with the family..grand children eventually found it too distressing to come, so we sent her photos of outing, weddings etc.
When she died we took the photos to the funeral as well as lots of photos before this dreadful disease took her away from us, and we were able to celebrate the lovely person she was. Hope this helps you both.
Even Mum who has not got Alzheimers just STM problems hates using the phone and will avoid it at all cost..I find letters, cards and photos the best means of cxommunication.
You need time to heal yourself as well, this is so distressing for everyone..try the photobooks xx

[Linas]

I use Skype too, it's very effective and gives me the chance to see my mother as well as speak to her.

I use software called LOGMEIN which allows me to operate a laptop, which is in her room. I initiate the call and then phone her to get her to sit in front of the laptop.

I also post pictures of the family and set them as a screen saver so she is regularly kept up to date. Sounds complicated but it was quite easy to set up.

Your comments and those who have replied remind me that we are not alone. I can relate to so many of the experiences you and others are having. It's so difficult to deal with as we lurch from one crisis to another.

regards

linas

[zoflora]

Hi
I have just started to send mum postcards when we go to places to visit.
Went to visit some lovely gardens the other day and picked a bright and colourful postcard with a few lines written on the back. The carers will read this to her and it will be in her room and brighten it up. I also send her postcards of the town in which we live.

Just a thought....

zoflora