Friends no longer visit.

[cornwallconnect]

Omg

So what if they can't remember you visiting!! They enjoy the time when you DO visit and surely that's what counts. So what if they don't remember what happened yesterday.

 

[madala]

Hello Paula,
So very true friends and family do drift away my wife who passed away in june could no longer speak but always had a big smile on her face when people came to the house. For the last couple of years the only people coming were the carers who came every day to give me a couple of hours off ,she loved seeing them and was always happy when they were there .They would talk to her even though she was not able to reply and always responded with a smile.All this different to 1 of her sisters who said she did not see the point in visiting her as she was not able to talk ,people fail to realise that it takes only a small effopt to make them happy .Please take care and look after yourself
Regards and Best wishes Madala

 

[Teanosugar]

The future

You raise an interesting point there. I'm debating on what sort of funeral service I eventually have for my mum. The idea of putting an announcement in the paper and having to face all sorts of people from her past - who probably already think she is dead - turning up to pay their respects is really bothering me. I'm not sure I could be polite either. I think it'll be immediate family and any CH staff who want to attend and the announcement will be made when it's over.

When my dad died, his younger brother in Scotland wanted to come down for the funeral - and I'm afraid I told him politely, but firmly, not to bother. My dad would have been FURIOUS if I'd allowed him to come. My parents trailed up to Scotland for decades to visit, but did any of them make the trip in reverse? Fat chance. The idea that you are then prepared to make the effort when someone's dead, when you haven't bothered when they were alive, really upsets me.

I whole heartedly agree, if people cannot make the time for the living, then they only make the time for the departed so they look like they cared! When my mother died (non dementia) I actually refused to have 2 people come to the funeral, as they made no attempt to see her when she needed friends and family! They were not happy, said you cannot stop us, and I replied, maybe I cant, but my husband and cousin who are big lads certainly can as my dad had asked that they did not attend. You go with your feelings, I did, and do not regret it one bit. My dad has dementia, dont know how long he is for this world, but there will be a few people I do not even inform, as they have made no attempt to see him for years. As for putting in the paper, I will not bother, those who are important, who cared, will be told personally, the rest can deal with it! Good luck x

 

[Teanosugar]

Some people just do not think!

Hello Paula,
So very true friends and family do drift away my wife who passed away in june could no longer speak but always had a big smile on her face when people came to the house. For the last couple of years the only people coming were the carers who came every day to give me a couple of hours off ,she loved seeing them and was always happy when they were there .They would talk to her even though she was not able to reply and always responded with a smile.All this different to 1 of her sisters who said she did not see the point in visiting her as she was not able to talk ,people fail to realise that it takes only a small effopt to make them happy .Please take care and look after yourself
Regards and Best wishes Madala

Maybe a person cannot talk, but they might be hearing and understanding, and there is recent research around Intensive Interraction with Dementia, which is a way of communicating with people with learning difficulties in a sensory way, it is quite interesting to see this being applied to dementia, and as I am trained in Intensive Interraction, I am going to try it with my father when his dementia comes to the point of non verbal. I am lucky to have had training with Dave Hewett a leading trainer in intensive interractions, who recently told me about intensive interraction and dementia, am sure there will be something on Google about this?

 

[NeverGiveUp]

After a number of years sending newsletters with Christmas cards which clearly spell out that we have a problem and then, the next Christamas, getting cards with just a scribbled 'hope you are all alright', no phone calls during the year, no reply to my e mails etc from those who live nearby. We have made a choice to garden our Christmas card list this year, cut out all the people who could have visited or phoned, we wonder if they will contact us to see if we are all dead.

Local people drive past with eyes front, when mum got taken to hospital after a shouting session, 2 local woman stood on our drive jeering at me. If anyone needs help (funny how people remember you when they need help) I would hope that we will turn our backs on them, problem is that we are a caring family and it would be hard to do.

Very little about human behaviour shocks me any more.

 

[susieoak]

Visiting

My mother, I am sure, is in the early stages of dementia and it is very difficult when you visit especially for me lately as she has decided that she loathes me and my children are the spawn of the devil and they do not exist for her at all to the point of covering up all the photos (framed) of my children and I and destroying any others. My brother lives in Canada and when she speaks to him he said she sounds fairly normal except that she will not speak about me. When I visited her last Sunday she told me I would be surprised at what she had to say.... She said she had gone through her cheque stubs and that I had received £35,000 in the last 6 years which, of course, I haven't. Also she said that my youngest son owes her £3,000 which he must pay back (which of course he doesn't owe her anything) I'm not sure how to deal with this one. If I visit in the mornings she seems quite okay but by the afternoon she absolutely hates me. She is still quite active in some ways - still going to WI meetings but has cut out some of her friends and is obsessing about one. I sometimes think I am just making things worse by visiting but I feel I have to keep an eye on her as there is no one else. I would not dare suggest she sees a doctor as I know she can be aggressive - the nearest I have got to it is when she suddenly found, when I took her away to see her sister, she had forgotten how to swim and I said that "it's funny what the brain does to you when you get older perhaps you should mention it to the Doctor". Am I making her worse by visiting if she has decided she hates me - is it making it more stressful for her?

 

[Tony H]

there is nought so strange as folk

I find it hard to understand why my mum's friends have stopped visiting, yes, her dementia is getting worse, but mostly she remembers who people are and she is pleased to see them, even her brother no longer visits, I did speak to my cousin, who says his dad was so distressed by the last visit, he does not think he will bring him to see her again. Yes, I know this disease is distressing but mum does miss the visits. Is this something others experience, and how have they explained why people no longer come.

..Dear PaulaJ...I am a Alzheimers/Dementia sufferer living in Bribie Island,Australia and I now know how the lepers must have felt in biblical times, as this is how my family treat me since being diagnosed in 2007, strangers are ok with my affliction, but family no,which seems to be quite the norm generally, perhaps they were not fond of me in the first place and the excuse they needed has finally given them a reason to stay away....being "he was always mad, now it has been confirmed",..or some similar equivalent.....who really knows how people want to think.??...Regards..Tony Hogben. Queensland.Australia. I have a website telling my story.

 

[NeverGiveUp]

Tony H. Who is the mad one? I seem to remember a definition of madness going along the lines of when you think someone is mad then it might really be you, problem with dementia is that when you have lived under the same roof as a sufferer then you realise how many undiagnosed cases there are around. I have wondered if seeing a dementia sufferer makes people feel uncomfortable about their own sanity.

 

[zeeeb]

So many people don't know how to act, how to behave, what to say... and not just with dementia, with cancer and any other big illness. Hell, i sometimes don't know what to say to my own mum anymore. I guess it's sad, but it weeds the acquaintances from the friends when you have a terrible illness. and to be perfectly honest, we are all lucky if we have more than a handful of true friends in our lifetimes.

Many people never learn this truth until they are in a crisis. Fortunately for me, i learnt it in my 20's so now i no longer waste much of my energy on acquaintances. I know who's there when the going gets tough. and I know who's not (and most of them are not). It doesn't mean I dislike them and can't enjoy their company, i just know not to bend over backwards for them.

 

[21citrouilles]

I remember that it was quite scary for me when my mom developped dementia. There she was, suddenly confused about our family history, the day, the time, helpless and lost. This was not the person I had known all my life. I had a wish to escape from it all. Then, as I got familiar with the disease, understanding the difficulties created by the memory impairement, I started to go with the flow, and concentrating on the parts that were still there, and then I found my mom again... Happily!

They're not connected with reality the way we persons with intact memory are, so it's unsettling, uncomfortable, maybe that's why so people disappear, as they cannot take it. It's very sad though, as the dementia sufferers are still there with their humanity and emotions.

 

[henrywill]

Worry about what you can do

I am the daughter of aMum with Alz (78) for 17 years and a Dad with dimentia due to strokes, 82, and being her caregiver. What I have found....People handle these things differently!!! I am 1 of 5 children...1 has not been since nov 2011, 2 have not been since jan 2012, 1 broke femur bone...housebound until jan 2013. They have left everything up to me. At first I was resentful, we should all be doing our share, have finally understood that we are not alike. I am blessed to visit my parents in an adult family home, where they still live together, even though they may not recognize each other. Our visits vary day to day, I've become adaptable(must be quick thinking). Their friends said they would visit, but at their age, could have problems themselves. In fact, one who stayed in contact with me monthly, died of cancer in aug 2012, never said a thing. They do have their own lives, own health, children, and grandchildren. My Dad is now in hospice (adult family home will deal with this) I do visit, I do have some lovely memories, just made some today! My Mum speaks gibberish, still have good memories. Don't stop someone from coming to a funeral....they just can't deal, you can...am planning one for my Dad, everyone is welcome. I don't have guilt.

 

[weary1]

So much anguish - for those who have to 'live' it and those who can't ...

I am not sure I will want people to visit when I am too far into the disease to remember them. I would like a card, email or letter, I hope someone will help me to respond. As I will remember them as they 'were' I may only have 'flashes' of recognition anyway. My father and mother regularly travelled 3 hours to visit Gran. She lived in a residential home near me, it distressed all three of them. Sometimes memories were triggered, Mum was helping Gran put on her coat to go for a ride in the car and she said 'That's a nice voice' I think she meant it was a familiar voice that comforted her, but mostly she was agitated during and after the visit probably because the memories triggered anxiety and 'loss'. If you live close enough to call for short regular visits it may be easier I think - I used to take Gran out, she used to sit in my house, every time she would say 'My granddaughter has a house very like this one' Now Dad has travelled the journey himself. Before Alzheimer's he said he wouldn't want people to see him, but in the earlier stages he needed a close familiar face even though he didn't always like the intrusiveness of the practical help we had to provide. But then there were the hard years with little response, people who knew and loved the 'person that was' may find it too distressing to see the person 'that is', visits can be very stressful for everyone. Those of us who are close to it 'grow with' the disease and the person, I think we become 'numbed' and forget how shocking it can be. When it's my turn, if I can't get to Switzerland I would prefer only to see a very few regular visitors, those people who can come for a short time without distressing me or themselves and I hope that if they prefer not to come they don't feel guilty. As for those of you who will struggle to support me then the person that is me now will have to love and thank you in advance - because the person that will be me then will probably be unkind because I will forget I love you and you love me and I will be losing control of my life, losing my dignity and I will be angry and frightened.

 

[zeeeb]

I remember when my grandfather had alzheimers, and was moved to a nursing home. we (or sometimes just my mum, his daughter) would travel up 2 hours to see him, and all the brothers who lived in the same town would all turn up to visit on the same day.

they couldn't cope with him on their own, but when mum was there (she was a nurse, so i guess that stuff didn't bother her so much) they would all turn up. and it would annoy her. she wouldn't see him that often because of the distance, to have it ruined by everyone else coming to visit at the same time.

it was just crazy that his sons couldn't pop in on the way home from work for 10 minutes now and then, but they just couldn't deal with it. didn't know what to say, didn't understand that if they did pop in, on the hop with their work clothes on, there would be no pressure to stay for an hour, but that 10 minute visit would have made his day.

 

[Memories]

There is a way to make the visit more fun for both visitors and visited!

A Digital Life Story that runs on a loop - perhaps muted during the visit - initiates fun conversations which all can enjoy!
Scan those personal photos and interesting images, together with loved music and burn onto a digital device (DVD usually). Make sure there are fun storylines (including pics of anyone you think may visit) and watch things really improve!
Please give it a go - there is nothing to lose and lots of happy memories to gain!
Anne

 

[Haylett]

I find it hard to understand why my mum's friends have stopped visiting, yes, her dementia is getting worse, but mostly she remembers who people are and she is pleased to see them, even her brother no longer visits, I did speak to my cousin, who says his dad was so distressed by the last visit, he does not think he will bring him to see her again. Yes, I know this disease is distressing but mum does miss the visits. Is this something others experience, and how have they explained why people no longer come.

Paula, I think this is unbelievably common. I haven't scrolled through all your replies, but I'm guessing that nearly everyone has experienced this "withdrawal" of support. Dementia is a long-term and progressive illness and sadly, there are few friends or family that stay the course. Whether it is a reminder of their own mortality or... who knows, - and it's sad because it cuts off a real life-line for your Mum and for you. And I am quite sure that your Mum has a lot to give and will continue to do so for a long while to come.

Mum scores 0/30 on the MMSE test - but she is still able to forge new friendships, still able to communicate. She has just two friends who write to me or to her, and I read her the letters. Her brother, her son/my brother, her god-daughter - all pretty much have turned their backs and fairly early on. Her grandsons haven't visited her for over 10 years. Against that, she has a very small circle of carers who really care for her - they trawl charity shops to satisfy her love of "bling", bring her soft-toys, sing with her, draw with her - so I hope that's the same for you and your Mum when you need it.

I suggested to my uncle that if he didn't feel he could phone, perhaps he could write or send a pc that I could read for Mum. But in the end, he couldn't even be bothered to do that. My brother used to say that he couldn't speak to Mum because I never answered the phone - so another carer offered her mobile, told him when she was in - but he still didn't call. My SIL doesn't call because it "distresses" Mum too much! I'm afraid it goes with the territory. I found the best way to cover the hurt for Mum was simply to distract or make excuses. Or forge cards myself - that worked for a while.

One other thing I tried to suggest, was to help with practical things - repotting plants, or doing a bit of shopping, fixing lights etc. I didn't have much luck with that either! - but maybe it's worth a try offering that to friends/relatives who are willing to help but would rather do something practical. At least, they're round and about, and your Mum would still get to see them....Good luck.

 

[jeannius]

Friends not visiting

I think one of the reasons is that if she is repeating her self and my mum still recognises some people but is quite repetative when trying to converse and this puts people off as there is no conversation. Also a friend or two may have had someone close with dementia which your mum reminds them of and it is hard to deal with. Another reason is maybe the friends don't know how to handle the situation. May be for you to give them a call and see if you ascertain in a gentle way why they don't call to see her.

 

[JVCx]

So sad xx

This is really sad. My Nanny was diagnosed a few months ago and since then she hasnt really seen anyone either. My cousins live 7 miles away from her and they all drive yet they go round only when they drive through her town to go shopping - this is once a month if that! I live 120 miles away in London and I see her and Grampy 2 weekends every month, it costs a fortune in petrol and takes a good couple of hours to get there but arent they worth it?

To answer your question, i think people may be nervous of things she might say - we knew for a while something was going on, but when she was actually diagnosed it took me a good 3 days to call her (I call her twice a day without fail) because I didnt know what to say. but once I had called her that was it, we were back on the 2 phonecalls a day. But I think this may be why she isnt getting visits, her friends need reassuring that she is still the same person! xxxxx

 

[JVCx]

I remember when my grandfather had alzheimers, and was moved to a nursing home. we (or sometimes just my mum, his daughter) would travel up 2 hours to see him, and all the brothers who lived in the same town would all turn up to visit on the same day.

they couldn't cope with him on their own, but when mum was there (she was a nurse, so i guess that stuff didn't bother her so much) they would all turn up. and it would annoy her. she wouldn't see him that often because of the distance, to have it ruined by everyone else coming to visit at the same time.

it was just crazy that his sons couldn't pop in on the way home from work for 10 minutes now and then, but they just couldn't deal with it. didn't know what to say, didn't understand that if they did pop in, on the hop with their work clothes on, there would be no pressure to stay for an hour, but that 10 minute visit would have made his day.

This sounds a lot like me, my mum was a nurse (now a teacher?!) and my nanny has alzheimers and a lot of the time the family like my mum to be there - she is very good with her, we all take it in turns to help her get up and about as she also has vascular disease so her mobility is awful at times!

its nice to know you have a professional around but my mum always says its so different when it is your own Mum - professionality goes out the window!

 

[KatieB]

I have found the same is happening with my parents. They have a couple of regular visitors, but most family and friends have stopped popping in. It's very sad but seems to be the norm. Katie

 

[RAINBOWROD]

No point visiting

That is a total kop out. If you truly are someone's friend you will visit them no matter what. I was in a coma yet friends and family continued to visit me - I didn't know they had been. Man up and visit!!!!!