The Human Condition

[Lucille]

Dear all

Just wanted to sound off to fellow TPers in the same boat!

Mum recently admitted to hospital then rehab unit with a fractured femur. It was a bad break and she'll probably be in RU for six weeks. She lives independently with minimal care (help with medication), mainly because I'm mopping up the trials and tribulations, e.g. money/bills etc. Over the past 18+ months, I've tried to do all I can for her, as most relatives have shown no interest and shied away from the 'AD/VaD label'. Some have been unsympathetic and quite deserving of a well placed slap across the chops; e.g. a very close 'friend' of hers said to me at the weekend ..."there's no point in telling her anything, she doesn't remember anything, she doesn't understand." All this with mum sat just 3' away. Mum pointed out that she wasn't deaf! People have drifted away from her at a time when she needs contact and interaction with others; I think she's currently stage 3/4.

How odd, then, that now she has an obvious physical disability, they are swooping down as fast as planes landing at Heathrow. Offering their best wishes. Even a sibling of hers whom she has had no contact with for donkeys' years rang me last night to ask how/where she was.

Whilst I can understand that some people don't understand AD, or for many it's a 'generational' issue where mental health was brushed under the front room rug, I do find some quite two-faced! Happy to pop in with a bunch of flowers and boast loudly of how many visits they've made, but offer no practical support to mum (or in helping me manage the appointments we've had to attend) in terms of her AD.

Sorry to chuck this rather philosophical one in. Sounds a bit self-pitying on my part now I've read it; but I feel that until some change their attitudes, that AD can and does affect a large number of people (whether as sufferers or carers) we all face even more of an uphill struggle with this awful illness, than we already have.

Another preview of this post leads me to believe that I've had a complete sense of humour bypass and my sentences are too long; but I'm just weary and fed up!

 

[Amy]

Hiya Lucille,
Sense of humour seemed to be reappearing towards the end!!
Yes, there are a lot of insensitive people out there. When dementia arrives, so-called 'friends' seem to disappear. You begin to find out the people who do care.We've found that even family have stopped sending Birthday cards; my mum is in advanced stages, but I hate it when people talk about her "Oh the poor thing" - in front of her. My mother is not a thing! She does not need sympathy but respect, and to be treated as the lovely lady she has always been. Yes, I think people need educating. We have to be the ones to do it. We have to teach our children to love and value all people. We have to be brave enough to continue going out, even when it is becoming difficult. Maybe we have to be prepared to say to relatives 'well it would really help if you....', because maybe they do not know 'how' to help.
Hope you are feeling better soon Lucille.
Love Helen

 

[nicetotalk]

Hi Lucille

Its sad realy how so called freinds turn there back because thats how it feels. No freinds came to see my mum while she was ill,oh yes you would get the odd comment "how is she" i even had a old school freind of my mums saying ive just heard about your mum and went on to say her work takes her near my mums house often and how she will come to see her. Did she ever come no, freinds she had known up until she became ill did not even come round. Maybe they should take an hour out of there day and read up on alzheimers and try to understand the illness its self and the effect it has on family.

kathy

 

[Lyndy]

Hiya Lucille and Amy

My Mum has VaD and we have just battled our way into another stage of the illness. This time I made sure that people were aware of the new situations - I had to because this time I started to feel that I couldn't cope - especially when well-meaning people think that saying 'Oo dear you have so much worse than this to come' is a comfort. Gee thanks folks that's just what we need when we are on the edge!

Mum lives near me and away from the rest of the family. Her telephone skill is such that she can pretend for short bursts that she is OK and the rest of the family say 'isn't she doing well'. They are all unaware of the amount of time energy and total devotion goes into setting up systems to help her to function through each day. Not to mention the hours that have been spent on the telephone advising and reassuring her about things that cause her distress. Like you I'm on 'Mop up' duty 12 hours out of each day with hubby and me constantly discussing possible solutions to each new hurdle as it approaches for the other 12- you have to be [or have been] there haven't you?

Following a particularly bad day recently I called my sister and blubbered into the telephone like the jibbering wreck I was becoming and, more out of concern for me than Mum she became involved from a distance which allowed me to take a short break with my other half followed by 10 days where she had Mum with her. It made me realise that perhaps I have been unwittingly shutting people out because I saw it all as my responsibility as the oldest and having 'looked after' Mum in the 11 years since we lost my Dad.

What I'm trying to say is that Amy is right - perhaps we need to simply ask and the help will come. Since talking to my sister and letting her know how I felt Mum and I have had a welcome respite [from each other] and we feel ready to face this awful illness again. More importantly, where I was at my wits end I now feel stronger for Mum and ready to face some of the decisions that we may have to make in the future.

Don't lose that sense of humour girl - it can be your lifeline. Sometimes my Mum's superb one shines through and we have a good old laugh - it's the best tonic of all.

The first thing I read on here after becoming a member was a poem by a lady called Tender Face which was posted on 28th August this year - it's called 'On the Trail of the Bacon Smuggler' click on to poems and find it it should give you both a chuckle - it certainly did me.

Take care both and sorry for going on here didn't realise I'd written so much!

 

[Lonestray]

Spreading the message

Hi Lucille, Amy your right on. I don't give a dam what others think. To-morrow I'll take my wife to the supermarket like I do every Friday and Wed. She passed the final stages about 4 yrs ago. She may not be able to speak and is as stiff as aboard as I lift her in and out of the car on to the w/chair she can see and reacts to the sight and beauty of small children. Some people look the other way, some others with children ask questions. The best was when we first started going past an infant school and the children asked questions. I explained that when their Granma or Granda get old they tend to forget things. One little girl asked if she can talk, I told her no, but it didn't mean she can't hear or understand, and if your G'da or G'ma get like this just give them a hug they'll like that. Now when we walk by the school a number of them come running accross the playground to greet us. I feel 10ft tall when I push my wife around, no staying in doors for me. God bless. Padraig

 

[Margarita]

Ignorant is bless they say .well they right was we not all in that position in one point in are life’s.

If someone had said to me they parents had AD in the past when I was living in the comfort zone all that would of come to my mind would have been how bad it can get it’s a bit like death when you don’t know what to say and all you need to say is sorry to hear about you lost and listen to the person not cross the road.

Now I know that AD is horrible but there is good thing that can come out of it it has given me more insight in to my mother then death would have ever done.

 

[Lucille]

Hi all and thanks for your replies.

Amy, you said: "Maybe we have to be prepared to say to relatives 'well it would really help if you....', because maybe they do not know 'how' to help."

I have tried, boy, have I tried! But with a sibling whose line in conversation is football and the best motorway slip road to use on the M6 to achieve the shortest journey times, you can see I'm up against it here! I've tried speaking nicely, cajoling, shouting, writing. Nothing works. Mum also has a companion. He's the one who said it was pointless telling mum anything because she wouldn't understand or remember anything. He now wants very little do with her and doesn't want to hear about prognosis or anything to do with her AD. I guess the gist of my post was more to do with people and their superficial approach when it came to dealing with (in mum's case a broken leg) as opposed to their complete avoidance of her when she was sat at home on her own having just been diagnosed with AD and saying to me, 'why does no-one come to see me?' Why indeed!

Anyway, it's the weekend and I'm going up to see her shortly and I can't wait. We will have a laugh and I'm planning to take her out of the unit for a couple of hours.

Thank you again for all your comments. And I have retained my sense of humour, but you know what it's like, some days you just feel worn down by it all.

Best wishes to all of you