Family Discord - can anyone relate to this?

MistyB

Registered User
Oct 14, 2007
2
0
Scotland
Hello, I'm a new member to this forum, and I really could do with just pouring out my feelings.

My much loved mum was diagnosed with Alzheimer's Disease in March this year, after 2 or 3 years of increasing memory loss. My sister and I pretty much expected the AD diagnosis, as mum was just not herself, but it was still a blow to us all. Mum was prescribed Galantimine

I was a 28 year old widow with a 6 year old daughter when mum came to live with us, and it worked very well for 11 years, until the generation gap became a little too wide for everyone.

for the last 9 years Mum has lived alone in sheltered housing, my sister lives just a few streets away from her, whilst I live 15 miles away.

The day after my mum was diagnosed, I attended a job interview and was next day offered a full time job. Having been made redundant two years previously, I accepted the job offer. Mindful that mum would need more time and attention, I put it to my sister that I needed to work, and wondered if she could be 'working hours' support for mum from Monday to Friday, and I would then be 'on call' for the hours after 5pm till 9am and all weekend. (My Brother in Law works away during the week and comes home at weekends).

My sister told me that she would do as I suggested, but that she wasn't happy about it. She would not be visiting mum everyday, because mum smoked and as a recent non smoker, she did not want to be in that environment. She did not want to learn anything about Alzheimer's or be referred to as a carer. As far as she was concerned, she is a daughter who cares but is not going to be labelled a carer. She would fill in official forms, and do whatever was necessary to help mum, and that she would keep me informed of the outcome of visits with Dr's or Social Workers. She also told me that she resented the fact that my decisions and mums actions years ago (mum moving in with me, and all of us moving to the village in which she lived) had endangered the plans of a lifetime that she and her husband had been preparing to embark on. We'd been down this road 5 years previously when I'd moved out of the village to live 15 miles away, so I wasn't shocked to hear this. Just really sad that it was being dragged up again, and I tried to ignore it.

Mum quite early on experienced some really bad weeks of awful paranoia, depression, confusion, delusional, it was crazy. Whenever a third party became involved in any incident involving mum, I'd call my sister to keep her informed and up to date. However, one day my brother in law called to say that they couldn't understand why I felt the need to phone them all the time with updates on mum. I was only calling them whenever a third party had been involved, like the time mum called the ambulance for herself because she felt unwell,and they took her off to hospital. I thought she should know about something like that. I am now not allowed to call them unless it's an absolute emergency. Consequently, we've not spoken for 6 months now.

They were invited to my wedding (long before Alzheimers was diagnosed) and never replied to the invitation, my neice is expecting a baby in November and I only found out through my daughter's friend. My nephew was supposed to be escorting me down the aisle on my wedding day, but we've never heard from him either.

My sister has always been kind of 'sensitive' - we had to telephone at least 24 hours in advance if we wanted to call in to visit, and I've always put little things like that down to her just 'being her'. I accept her little 'foibles' and I do love her.

So, sorry this is so long. I just feel totally confused. Mum is on the higher dose of Gelantimine now, and has shown some interest in life again and is happier in the last few weeks. As far as I'm aware, she does not know that my sister and I have not spoken for months. it does make it difficult though, especially when mum remembers something, and asks me to confirm something about my sisters family. I'm not able to do so honestly, because they don't want me to contact them.

I've gone through the anger thing, and also questioned and examined myself to try and find out where my sister is coming from. I've obviously hurt her big time, but can't for the life of me work out how. Now, I'm just trying to move on and not let these awful things she said to me buzz around in my head too much.

Luckily my Employers are very supportive, and I just have to tell them when I need time off to take mum to see her consultant. I also visit mum every other night straight from work, and spend all day Saturday with her, and she'll sometimes agree to come for lunch on Sundays and we go get her. She's so good at the moment, that we took her to the local theatre this week, and she loved it.

I thought we were a pretty average and close family before Alzheimer's, now I don't have any extended family it seems. Has anyone else experienced anything like this?
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
0
Kent
Dear Misty, welcome to TP.

I hope it helped you to write about the position you find yourself in with your mother and sister. If you need to off load, TP is the place to do it.

If you take time to read posts you will soon realize how much family conflict there is, before, during and after diagnosis of Alzheimers [AD], for so many people.

There is often family conflict in the first place, but when there is the addition of such a distressing condition as AD, it seems to make matters worse.

It sounds as if your sister needs order in her life, you write about her needing notice of intended visits, but with AD there is no chance of order, we have to live day by day or even hour by hour.

Perhaps the introduction of your mother into her life, resulting in your sister being `on call`, during the day, has threatened her need for order. Perhaps as she feels unable to turn her back on her mother, she is turning her back on you.

Do you think it would help to write to your sister, as you have written to TP. You could explain how you feel without an emotional confrontation. It might help.

I can`t think of any other way to resolve this unhappy situation, perhaps someone else will.

Please continue to post on TP and let us know if things improve or not. There will always be support here for you.

Take care xx
 

Devonmaid

Registered User
Sep 23, 2007
51
0
Dartmoor Devon
Hello there and welcome, I am new to TP as well but have found such comfort in it, hope you do too . I think what Sylvia says is spot on , try writing to your sister . This way , emmotions will be there to read but not to misinterpret , I know its hard not to get angry or resentful on the phone or face to face and things can be said that can never be taken back to writing is more direct and "safer " > Even if it doesnt have the result you want, it is bound to make you feel better for having taken some positive action . I am sorry to hear about your trouble , we have a similar situation with step brothers and sisters who dont seem to care that Mum is going into an EMI unit , have not visited her in hospital and havent even been there for their own Father who is 87 and needs support . The only think I can say is that you know that you have done what you can and can carry no guilt and that is a big thing . All the best to you and yours ,
love Kate
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Dear Misty

Welcome to TP. I understand how upsetting this all is for you. It's hard enough to care for someone with AD, without all the added distress of family fallouts.

And yet it's so common. I envy those with loving, supportive families, who can get together and agree a plan for sharing the responsibility. You'd be amazed how rarely this happens!:(

Some people seem to be able to cope with the changes that AD brings, for others it's just too much, and they can't or won't accept that help and support are needed.

I think the suggestion to try a letter is a good one, but be prepared for it not to produce the effect you hope for. It sounds as if your sister and bil are control freaks who don't want the resposibility of your mum themselves, but resent you taking control.

There's really not much you can do if that's the case, but it would help you to let your sister know how hurt you feel, without putting any blame on her, of course!

I'm glad you've found us, do stay in touch, we do understand.

Love,
 

Kate P

Registered User
Jul 6, 2007
565
0
Merseyside
Hi Misty,

I'm glad you've found Talking Point and I hope you will find it as useful as I have.

As Sylvia has said, family conflict seems to be quite prevalent especially when dealing with such a highly emotional illness as dementia.

Given what you have told us I would agree with Sylvia that your sister clearly needs to live her life in a controlled way and that can't be done with AZ. I don't think that you have done anything wrong and really your sister is clutching at straws because she doesn't want to face up to what's really going on.

And that is that you have faced your mum's illness with strength and positive action where as she is not able to face up to the truth of it as it was not part of her "well organised plan".

The fact remains that some people are not strong enough to face up to these things - my aunt is a case in point.

I was initially angry but now to be honest I pity her to some extent - I would imagine life is infinitely more difficult in "her world" than it is in mine. She lives in fear where as I am ploughing on and making the best of life around me for me and my family.

Do not feel guilt for your sister's actions - she is making herown choices - she is an adult and if she chooses to bury her head in the sand well that's her look out. It makes it harder for you because it means you have the full responsibility but you'd only be banging your head against a brick wall anyway. unfotunately you can't make people see sense if they don't want to.

I hope I haven't been too blunt and offended you.:)
 

Mameeskye

Registered User
Aug 9, 2007
1,669
0
60
NZ
Hi Misty

You will find lots of people here to talk to and to rant to.

My family was unfortunately one of those who had problems when Mum was ill. I was told to butt out of her care as they were living closer but the difficulty was I would have done it all if I had been offered some support with my twin toddlers at the time. They resented the fact I lived far away and had to do it as I had, up until the borth of my boys always been the one there for my parents.

We hit a crunch as I was totally fed up being told what to do by people who were visiting for a duty visit 20 mins once a week and telling me that they knew best and how tired they were. I was travelling 500 miles every 3 weeks at that time to spend days with mum in the home and take her out shopping or for lunch etc. which they would not do.

I withdrew from contact with them. I could not cope with supporting them at a distance with no support for myself for visiting, dealing with Mum's emotional needs as well as her physical ones and coping with day to day life. They drained me of the energy I needed with their phone callls and problems. My opinions as to my Mother's conditions were constantly rubbished by my then SIL, who could not understand the disease and could not understand that my definition of good was on a sliding scale (like Mum's illness..what is a good day now would have been the pits a year ago!)

As time progressed we have met and chatted again. My children are older now and I am a lot stronger. I vowed I would do what I needed to do to make sure that my kids and my Mum did not suffer. Unfortunately I had to leave them to fend for themselves to do this.

Grief is strange and some people cannot face this disease nor find it within themselves to empathise and care. Your sister may be like this. She is not any less affected but cannot cope.

You are doing well. What is happening is all too unfortunately a normal situation. I tried writing to them at the time but all I got was a load of rehashed arguments too.

Be strong and true to yourself. Do what you believe is the right thing to do and that will give you no regrets.

((((Hugs))))

Mameeskye
 

Laylabud

Registered User
Sep 7, 2007
111
0
Kent
Hello Misty and welcome to TP


You are not alone when it comes to major fall outs with siblings. I myself have an older sister who basically has never given any thought to both my parents over the years, it has always been left to me to pick up the pieces after the destruction she left behind her. When my Dad died 10 years ago, for a while she was supportive to my Mum (maybe she felt guilty) but that soon faded and the old uncaring sister appeared. Through my better judgment i went along with my husbands advice and tried to get her more involved with Mum, it proved hard because Mum really did not want much to do with her. At times i felt like having a break as mum lived with me and it was always me having to take Mum around to see my sister, she never made the effort not even on birthday's, mother's day etc, she lives less than 2 miles away.
I feel that my sister has pushed me into putting mum into a home as it is something i have never wanted to do. Just after mum was confirmed as having AD we talked about sharing the care but on the eve of mum coming out of hospital she told me that she was not going to look after her as she wasn't paid for doing it, (my husband got carers allowance as he was made redundnant & agreed that mum needed someone to be with most of the day, we did not have a problem with her claiming it as well but was not going to give her half as this is a taxable allowance)i will not go into details but the arguement that followed was not pleasant. i did not talk to her for 2 weeks after and still to this day things will never be how they were. We both hold a lot of resentment but for the time being have put them aside for Mum's sake, what will happen in the coming months etc who knows.

Keep you chin up and do what you can for your mum when you can, you are not the person here that needs to question anything that you have done or will do for your mum, your sister like mine will have to live with the guilt in years to come, or maybe not.


best wishes

Laylabud
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Mameeskye

that my definition of good was on a sliding scale (like Mum's illness..what is a good day now would have been the pits a year ago!)

What a great description of AD!

Love,
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Hi Misty and welcome to TP

Firstly, I have to say that I am one of the fortunate "onlys": while I didn't have any extended family to give support, neither did I have to argue with them about my mother's care. As you will see from the other responses disagreements (up to and including total warfare) is not uncommon. A diagnosis for dementia puts a massive strain on family relationships, and the practical management of same adds even more stress. When you put all that on top of the sort of resentments that tend to exist in even the best organized of families and I suppose the surprise is not that these breakdowns occur, but that they don't occur more often.

The truly unfortunate thing about the diagnosis of any major illness is that it can and does seriously impact ones plans for the future. One hopes that one can adjust to the changing reality, but I think that can be particularly difficult when one feels, rightly or wrongly, that one has been left out of the decision making process. Note I said "feels": this is not necessarily about what actually happened but more to do with a visceral emotional reaction, and I doubt that anyone can change someone elses emotional reaction. If you are a person who needs order in your life, as your sister appears to be, dementia with its essentially unpredictable nature and course is probably the worst illness to have to deal with.

It may not seem like it, but in a way you might be fortunate: it does sound as as if your sister has been entirely upfront about what she will and will not do, and how she feels about the situation. It may not be what you want to hear, it may not be how you would handle it, but at least she has laid out her boundaries, so you're not left twisting in the wind, with her promising one thing but then not living up to it.

On a practical level, I think you have to try to put out of your mind why she may be like this and just work with the situation as it is, rather than as it could be. It does sound from what you say that she will always be resentful about having even the most minimal of caring roles thrust upon her, and I simply can't think of anything you could do that wouyld change that. If you genuinely don't know why she feels this way, then writing would seem to be a worthwhile approach, but while I might be reading more into your post than was intended, it sounds as if you do - she didn't like your decisions about moving all those years ago and doesn't now like your decision about working. You obviously have to work, and you can't turn back time, so revisiting that seems unlikely to be productive.

In other words - you have to do what needs to be done and that you can live with, and let the chips fall where they may.

Best wishes
 

Trich

Registered User
Aug 16, 2007
31
0
France
Hi Misty and welcome,
I am so glad that your mum is having a good period at the moment and that you are managing to get her 'out and about'. I wonder what an 'average family' actually is? I am lucky in that I have a large family to spread the load but I have had to bury two hatchets in order to cope with the ongoing dramas that have engulfed us. I had not spoken to one sister for 9 years since our mum died over thoughtless comments she made which totally devestated me. When dad was in hospital I asked if I could stay with her as she was nearest and after an uncomfortable start we did build bridges. Unfortunately two sisters are at loggerheads all the time (old history) and have even had slanging matches over the hospital bed. All this to say that when there is old history any crisis when everyone is emotional seems to bring it all out. You said she resented the fact that my decisions and mums actions years ago (mum moving in with me, and all of us moving to the village in which she lived) had endangered the plans of a lifetime that she and her husband had been preparing to embark on." [B]Perhaps this is still festering after all this time. Maybe she is saying you made the decision then and by not agreeing to visit your mum every day or totally agreeing to your timetable is a way of saying she will help but not totally on your terms. The one who makes the most effort is the one that is matters most to so if you do want to have the extended family again then you might have to do as I did and get past the history and the hurt and communicate. You say that you must have hurt you sister 'big time' then could you not ask her what you have done. The more time that goes by the harder it is to patch things up. You also said that you thought you had "a close family before Alzheimers and yet your sister did not go to your wedding so even then she was saying something! The Alzheimers diagnosis made it necessary for you both to communicate and you are both coping in your own ways with this dreadful disease and at least she is helping out. My sisters have had to come to an uneasy truce because they both love my dad so perhaps out of love for your mum you can both at least find a way to get through this. Maybe at the end of the day as someone said on TP "you can't reason with the unreasonable" but you will know that you tried and will have nothing to reproach yourself for.
TrichX
 

MistyB

Registered User
Oct 14, 2007
2
0
Scotland
Thank you all so much

Thank you all so much for taking the time to respond to my 'maiden' post, I really appreciate it. I do feel a bit embarrased just blurting everything out like to you all, but I'm so pleased I did. I was feeling pretty down, but since reading your replies I feel as though a heavy drape is slipping from my shoulders.

You're right, of course. We all have our different ways of coping, and different levels of what we can cope with. I should be thankful (and I am) that I've always been a pretty good (and a quite happy) juggler when it comes to what life throws our way in the way of challenges. My sister's whole attitude just totally floored me though.

I do have a much better idea of how to deal with this now. Kate P you hit the nail on the head when you said "I would imagine life is infinitely more difficult in "her world" than it is in mine." I think that's true, and I'm sorry for her.

I'm still learning to let go of my negative feelings about it all, (been trying for six months now) but honestly - after all your replies I feel so much calmer on the inside.

Thank you for sharing your experiences and thoughts with me, it has helped.

Mum saw her consultant today and he's very pleased with her. She scored the highest ever on her tests, so maybe the higher dosage of reminyl/gelantimine prescribed 3 months ago has kicked in. Long may it last.

Actually, I wondered if this improvement in mum may have had something to do with her seeing an old friend at my wedding on the 4th August this year. Our friend has sufffered two strokes, and whilst she's still there on the inside, her appearance has altered dramatically. Mum was having a 'goodish' day at the wedding and said she enjoyed it, but next day she was in floods of tears telling me how shocked she'd been to see our friend looking so altered and aged. (My Mum is 72 but still wears jeans and trainers!) Well, it's strange, but Mum started to improve from that day onwards. I think maybe it took her mind off her own troubles. I like to think so, anyway. At least the the 30 phone calls in a 24 hour period stopped then, as did her pre-occupation with how much money she had in the bank! She'd ring every five minutes asking how much money she had, and where was it, and where did it come from. she'd ring in the night hysterical, accusing me of 'leaving home' in secret and trashing her home and stealing things. it was nuts, and quite frightening to be honest.

We're grateful for and enjoying these 'good' days. As for tomorrow days, I'll continue to learn as much as I can, so that we can meet it as best we can.

Thanks again everyone. I'll definately be popping in regularly.

Misty
 

Taffy

Registered User
Apr 15, 2007
1,314
0
Dear Misty,
Welcome to TP. I hope that one day you and your family can sort things out. I know how hard it is at times to let go of passed happenings. One thing I have learnt, with what I have experienced and still are experiencing with this journey is that what seemed like pressing issues really are insignificant compared with the misery these sufferer face in their everyday struggle. As Hazel quoted
Skye said:
And yet it's so common. I envy those with loving, supportive families, who can get together and agree a plan for sharing the responsibility. You'd be amazed how rarely this happens!
This is the reality of most situations and one that I found.

I am glad that you feel better about things and the news about your mum would be so uplifting.
MistyB said:
We're grateful for and enjoying these 'good' days. As for tomorrow days, I'll continue to learn as much as I can, so that we can meet it as best we can.
that's the right attitude to have. Best Wishes Taffy.