Family Conflict

[Emily McKinley]

Hello All

I am a new member and would like to share my family issues around dementia and would appreciate any practical advice or others peoples experiences.

My Father was diagnoised a year ago, when he was 62, his dementia was already quite far gone at this stage. My mother is the sole career with support from local "walking buddies" and "Sitters" along with family help. The trouble I am having with my family is that they treat my Dad like a baby and have, what feels like, given up on him. I read a book called "Contented Demetia" by Oliver James which helped me emensley with my Dad's care and I encouraged my mum to read it also but she tells me she doesn't have time to read it (even though she has time to read her novels). The techniques and understanding of care in that book is priceless and should be practiced as a family unit - but the trouble is we don't talk as a family about my Dad's care. I live 70 miles away from the family home and find it hard that I can't just pop round to see how they are doing, my mum sometimes uses this against saying I don't know what it is like as I am not ther all the time. Its really hurtful to hear. Now we have the pressure of Christmas upon us and my mum wants us all at home christmas day because in her words "it could be Dad's last Christmas" this only enraged me and made me not want to go. What a negative defeatus attitude but if I say anything I get "well your not here all the time you don't know how ill your Dad is". The long and short of it is that I am dealing with my dads illness alot better then the rest of my family, my mum thinks that my dad performs for me when I visit but the reality is that he is just reacting to me and the techniques I use with him. I feel they may resent me for this????

I just wanted some advice on how to deal with family members trying to cope with a relative with dementia? Has any one else experienced a similar problem?

Thanks for listening,

Emily x

 

[Grannie G]

Hello Emily

With the best will in the world you can practice what you preach, but it`s too tall an order to expect the more full time carers to practice what you preach, if they do not find the suggestions inspiring.

We each have to find our own way through this mess. Some learn through reading, others learn from their own mistakes.

When your mother finds time to read her novels, it is probably her one time for relaxation and escape from reality. Please don`t criticize her for it.

There is nothing more soul destroying for full time carers than unsolicited advice from family members who think they know better. I know you are trying to help, but it might be more acceptable if the help was from your mother`s perspective rather than from yours.

If you find it hurtful when your mother suggests you don`t know how it is as you are not there all the time, think how hurtful she might find your criticism.

I`m sorry to be so outspoken but we have not slept all night. I had to phone the police this morning to ask them to find my husband who had gone walkabout for over two hours. Now he is home he will not even look at me, and I have been his sole carer since his diagnosis three years ago, and a few years prior to that.

 

[Helen33]

Hello Emily

First of all Welcome to Talking Point. I hope that you find this site to be as helpful and supportive as I have.

I think I can see your difficulty and it might help you to read some of the threads on Talking Point because you will then see it from different perspectives.

Personally I feel that the best help that can be offered would be to the care givers because they need to be in the best possible health and frame of mind in order to be able to cope with an extremely demanding illness. It can never be the same when one isn't the sole carer because being the sole carer it invades every moment of the day and night. Yes, even sleep is worrysome. I value all the support that is offered me so that I can continue to offer my husband the best of care.

Of course what you have read about contended dementia is valuable and perhaps you could think of sharing what you have learned with your mum in a more positive way. I would value learning something different if it were put to me in a loving, caring way but I am sure I would bristle at being criticised.

I hope that you have a wonderful Christmas with your family Emily and that you find ways to cherish both your dad and your mum.

Love and best wishes

 

[Canadian Joanne]

Hi Emily,
I think Helen's suggestion

Personally I feel that the best help that can be offered would be to the care givers because they need to be in the best possible health and frame of mind in order to be able to cope with an extremely demanding illness.

is an excellent one. Perhaps you can take your dad for a walk or a drive - something that will give your mother a break for a while.

Your mother may not be far wrong when she says your father "performs" for you. There is a certain amount of truth in this because he doesn't see you every day and his socialization is intact enough to want to be on his "good behaviour". The fact that you have read up on techniques on how to deal with AD certainly must help a great deal also. Perhaps you can leave the book for your mum. Let her look at it on her own steam and don't ask her if she's read it. Perhaps one of your siblings would be interested in the book.

If it were me, I would go for Christmas Day. You will most likely have more Christmas Days with your father, but each year he will have lost a little more to the disease. Make the most of what you have now, because you don't want to regret not going when it's too late. Enjoy the present.

Take care and keep us informed.

 

[Brucie]

Sensible replies so I won't repeat what they have said.

The long and short of it is that I am dealing with my dads illness alot better then the rest of my family, my mum thinks that my dad performs for me when I visit but the reality is that he is just reacting to me and the techniques I use with him

This is classic and happens all the time when people such as doctors and visitors see a person at a certain stage of dementia. The person makes a supreme effort and can appear to be pretty normal. Infuriating to someone who has been struggling with with the person's behavioural challenges for days.

The key is to be there for a protracted period to understand this condition. Why not offer your Mum a weekend off and see whether your techniques work for a long period, when you are the carer? If they did then I'd certainly love to hear a success story of that nature.

 

[Emily McKinley]

Thank you for your words of advice and perspectives I will continue to read through the threads and take on board your advice.

It's not easy for any of us but this support makes you feel not alone.

Emily x x

 

[Grannie G]

Thank you Emily

It is not easy to accept criticism, especially when you have so much faith, you have found an answer to a problem.
It takes a big person to be prepared to take on board other points of view.
I hope you will be able to reach a satisfactory compromise about approaches to care.
Love xx

 

[Lucille]

Hello Emily

Welcome to Talking Point!

I see you mention the book by Oliver James on the SPECAL methodology. You might be interested in reading this review (on the AS site) about Contented Dementia: http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=674&pageNumber=8

I can see both sides of the coin re the turmoil created within your family. I care for my mother from a distance. Those that live nearer have made it clear they do not want any responsibility for her welfare or care. I have therefore had to set up all the support she has (such that it is ...) Even from my own situation and as bad as it is sometimes, I know from reading what others have to deal with on here, that I am one of the lucky ones. It is different when you have to spend all your day with someone. After four days with mum, I come home absolutely spent. Bruce is right when he said that the way someone presents to one person can be completely different to another.

Perhaps, as someone has suggested, you could look after your dad for the weekend, or take him out for the day and give your mum a break?

Let us know how you get on.

Go well.

 

[Hilary K]

Hi Emily

I've just been reading the replies to your posting.

I'm reading Contented Dementia at the moment and I too have mixed views about its value.

My Mum has vascular dementia and she lives in a Care Home.

I'm finding it hard to start to write my reply to you because of the way loving someone with dementia makes you feel. I love my Mum more than I can say but in a lot of respects she isn't the Mum I'd known for 42 years. Having said that in a lot of ways her emotions and feelings are still in tact and we can still connect and tell each other how much we love each other - for the time being.

What I'm trying to say is that no-one knows how it feels for anyone else. It makes you feel sensitised and vulnerable so even when friends, family etc are trying to be sympathetic somehow it grates and is annoying - sometimes.

Its about re-learning about someone you've loved for years and years.

No-one knows how it is for you, your Mum, your Dad, your family, my Mum, my Dad, me or my family. Try and be patient with yourself and your family. You're all doing your best. It is the hardest thing I've had to face so far in my life.

Good luck and try to grab and keep hold of the smiles and laughter.

Hilary

 

[Amber 5]

Good words of advice there. I know from trying to look after my mum from 2 hrs drive away how hard it is and there seems to be something new every day to worry me. When I'm not there I feel bad about that, but my family need me too. Then when I am with my mum, we usually have appointments to go to, or something to sort out. Anyway, I have noticed that my brother who lives five minutes drive away is finding it much more difficult to accept and be helpful (at the moment). It affects everyone differently in how they learn to accept and cope with the progression. We have been through quite a few moments of thinking we've got a good plan set up which will make her life easier, only to realise that either it actually isn't going to make a scrap of difference, or that she isn't ready to accept such an idea/help right now. It can be frustrating, irritating, disappointing, upsetting, exhausting, depressing etc. etc. but I try to enjoy what we have now without too much negativity getting in the way, because I know it is only going to get worse in the future! Sometimes its hard to be jolly, but there is still a lot of enjoyment to be had - on a good day!

I hope it helps to read the posts on here. I'm quite new to this and it is such a fantastic support when you realise that people are going through virtually identical situations in some cases.
Best of Luck, Gill x

 

[jimbo 111]

Family Conflicts.

In the short time that I have been a member I really do appreciate the value of reading other peoples experiences.

Ihave thankfully not had any conflict with my sons., but I do really understand the frustration, as an only carer, when my wife suddenly ' gets better ' when they visit , or when the doctor or district nurse talks to her.
I often feel that they must think I exaggerate her condition
It is comforting to to understand that it is a common situation