Sorry - another question!

[jackie1]

Kate, You ask how people with young children cope. An honest answer is we just do. It is by no means easy and most days I seem to have to come up with new ways of managing things. As our boys are 7 & 9 they are aware of dangers. I can only suggest that you never leave your daugther alone with your mum. That does not mean you stop visits, you just stay in the same room.
Jackie
x

 

[gerrie ley]

hazel janetruth

Hi Hazel we reoprted to the DVLA and they gave Mollie twelve months which our doctor said was irresponcible so we handed in her licence.

Janetruth I think it depends how much they care for their mother as to how much they get involved.

regards gerrie

 

[Westie]

Hi Kate,

I care for my husband who is 52 and have 2 children, aged 10 & 14. In my experience, children are very good at adapting to different situations and also very forgiving when things go wrong. But I would be wary of leaving your very young children alone with your mother. It sounds awful but you just can't be sure what may happen and your mother is no longer able to make sound judgements about safety issues.

I know my husband will one day need to go into a home, but no idea how far off that day is. I dread it - just thinking about it brings such horrendous guilt feelings. But I will have to put my children first and when we get to a stage that we can no longer cope as a family or I feel my children are being too badly affected or, god forbid, in any actual danger from their Dad, then I know I will make that terrible decision. I will have done my best and that is all any of us can do.

The driving issue is a very difficult one and very topical to me this afternoon. Peter hasn't driven since last summer but last week took keys and tried to drive. Luckily crashed into our garage door (no damage done) and I retrieved the keys. Today he was in an absolute rage because I couldn't take him out as due to collect from school. Whilst I was in bathroom he found car keys I had hidden and drove off. I had to inform the Police to get him stopped and I was so fearful for his, and others, safety. He returned home safely before the Police had managed to find him and although he says he won't go again, I know from the way he says it that he has every intention of doing just that. He had such 'fun' and is delighted with himself that he managed to outrun the Police. So what to do? I have no idea but am sitting here with dread in the pit of my stomach and shaking.

Please try to stop your Mother driving but be prepared for a battle. For someone who loves driving and their independance it is such a loss.

Take care of yourself and stay strong.

 

[jenniferpa]

Oh my goodness, how worrying for you. It sounds as if you're going to have to get some sort of lock box for the keys.

 

[connie]

For Kate:

Hi Kate: our journey.

Lionel was diagnosed early onset in January 2002.......awaiting diagnosis for about 4 years before.

I am/was his sole carer. He went into respite (self funding) regularly. He always said "he did it for me". This did enable me to care for him, at home, until November 2006.

At this stage , although I had a carer in 7 days a week to help me wash and dress Lionel, it was not enough. He went to day centre 4 times a week, but MOBILITY was our problem.........as this deteriated, so did my ability to cope single handed.

Found a super 'care home' for Lionel........and until March 2007 he was indistingishable from any one else. Now, well he 'exists' being slung between bed and chair, although his appetite is good (this week).

Is there ever a right or wrong time.......the key is finding the "right" home.

The one thing I don't have.....is a guilt complex........I know I have done, and still do, is my best.

Hope this helps.......

 

[Nell]

For Kate

Dear Kate,
Wow! I bet you never expected such a barrage in response to your perfectly reasonable post!

I am 55. My Mum is in care. This is my story. I'm sure some would feel I have "failed" in my duty but I know most TPers are very tolerant of the individual nature of this disease and of the way in which each Carer copes.

When my Mum and Dad were forced to leave their country of origin in the early 80s, they came to live with me and my 2 children. They were a wonderful help to me (and I hope I was to them - I was the only one working). However even then (my parents were in their early 60s) we all experienced tensions - my parents had a traumatic time adapting to a new culture (fortunately not a new language) and to being out of work. (They had both been farmers all their lives.)

For me and my children (aged 7 and 8 when M&D first came to live with us) there were many challenges as to whose rules were to be obeyed, etc. My parents sent me and my siblings to boarding school so they were not used to caring for children. They came from a country where they had servants so my mother found housework demeaning and child care a huge challenge. As the only income in the family, I HAD to keep working. This situation continued for nearly 4 years.

Why do I tell you this LONG story!!?? Because I feel NO ONE has the right to judge without knowing the original circumstances of each situation.

My Mum wanted to keep living with me. I was engaged to be (re-)married and I did not think I could possibly expect my new husband to take on 2 step children AND his in-laws!! Fortunately my Dad agreed and other arrangements fell into place which allowed them to have 20 years in a cottage on their own in peaceful retirement. (And my "new" husband and I are celebrating our anniversary today!!)

As my parents grew older I firmly informed them I was not going to have them live with me again. I made it clear that this was not BECAUSE of them, simply that circumstances could not permit it. Yes, I felt very guilty. Yes, I thought I was a "bad daughter" - but NO, I have never regretted my decision!

When the time came, my parents fortunately made their own decision to move into care together (Mum had early dementia and Dad was severely disabled). Fifteen months later Dad died, so now it is just Mum in care.

My sisters and I care and support her in every way. We make every effort to meet her needs and provide her with the love and company she needs and wants.

But we could NOT care for her at ANY of our homes. Mum is physically frail - all of us live in homes with stairs. Mum needs 24 hour care - one sister and I work (albeit part time in my case) and the other sister spends part of her life here in Australia and part overseas where her husband is based.

My daughter is older than you but I would say to her, DO NOT ever think about having me to live with you!! If a parent needs care, it is wonderful if the family provide all the loving, caring and supporting - but I believe NO ONE should be expected to care for their parent 24/7.

I know many people on TP do, and many are happy to do so. I am in awe of them and have HUGE admiration for them. I know that I couldn't do it. For those who can, and who want to, it is a wonderful and special thing to do.

However I am no less of a loving daughter and caring person because I cannot do it.

Only you can decide how to handle the situation with your Dad. Obviously you are already giving him a great deal of help. This is wonderful of you. I suspect your Dad would have had a very different outlook on "responsibilities" if HE had been expected to care full time for a parent with dementia when aged 29!!

Please remember that loving and caring is NOT dependent on whether you are prepared to care for your Mum 24/7 when the time comes. It is up to each one of us to decide what we can do and what we want to do. Of course there is guilt, and pain, and confusion - love brings all these things sadly. But the sort of self sacrifice that caring 24/7 brings (especially when it impacts on others such as your partner and children) is NOT (IMHO) something that love requires of us.

I hope you can find a solution that meets your needs and is loving and supportive of your parents. I'm sure you will! We at TP are a diverse bunch but we can be relied on to give you food for thought and (hopefully!) support!!

 

[Grannie G]

Dear Nell.

Thank you for your story. You have the courage of your convictions and I hope Kate takes comfort from your words.

Happy Anniversary to you and your husband.

Love xx

 

[Skye]

Happy anniversary, Nell.

Thank you for sharing your story. I'm sure it will be helpful to others who are struggling to come to a decision regarding the care of elderly parents.

Please remember that loving and caring is NOT dependent on whether you are prepared to care for your Mum 24/7 when the time comes. It is up to each one of us to decide what we can do and what we want to do. Of course there is guilt, and pain, and confusion - love brings all these things sadly. But the sort of self sacrifice that caring 24/7 brings (especially when it impacts on others such as your partner and children) is NOT (IMHO) something that love requires of us.

This is such a significant statement, one which everyone should consider when making that decision. Not everyone will agree, but that's what TP is about. Helping people make up their own minds.

Love,

 

[jackie1]

I'm sorry but what choice do partners have? We married for better or worse. And even though the marriage may have been significantly damaged prior to the diagnosis we are still "expected" to care as it's our "responsibility" This is irrespective of our circumstances.
We have 2 young children, the nearest family is 80 miles away (and they have their own troubles) so everything falls to me. I have NO choice. I thank God every day that enough love survived from prior to the diagnosis to get me though but it isn't easy and I know it is only going to get worse.

 

[Skye]

Jackie,

Believe me, I know how hard it is. I care for my husband 24/7, and am constantly exhausted. For those of you having to cope with young onset dementia, young families, jobs, etc., it must be so much harder.

No, we don't have a choice, (would you want one?), and my reply to Nell was specifically about those caring for parents.

I'm sorry if my post upset you. Believe me, I do sympathise.

Love,

 

[jackie1]

Oh Hazel you didn't upset me. Maybe I'm having a bad morning, but reading through all of the posts again, I just felt like crying. It was all this talk of choice. As wives/husbands we really don't have any (whether we would want it or not). I think an earlier post said it was our responsibility and maybe it is, but it just felt such cold a statement.
Off to kick a ball round the garden with the boys, that's sure to blow away this mood.

 

[Skye]

I think an earlier post said it was our responsibility and maybe it is, but it just felt such cold a statement.

Yes, it does sound cold, doesn't it? I think 'responsibility' is a wrong choice of word. We don't do it out of responsibility, we do it out of love.

And that love doesn't mean we have to drive ourselves into the ground. Sometimes it means that we have to give ourselves a break, spend some quality time with the kids, have a holiday. And if that means respite care, or even permanent NH care, that doesn't mean we love them any the less.

Be good to yourself, Jackie. You're doing a very difficult job, and you're doing it well. And we care for you too.

Love,

 

[Westie]

Jackie, I think Hazel has summed it up very well with "sometimes we need to give ourselves a break, spend some quality time with the kids, have a holiday" (sorry don't know how to do the clever quotes!!)

I too care for my youngish (52) husband and have 2 children and I find I'm constantly torn between Peter and my children. Who to spend time with, who should 'miss out' this time?

I agree I have a responsibility to my husbands and am not the sort of person to want out as soon as the going got tough, but - and it's a BIG but - I believe I have a greater responsibility for my children. They need me as well, need to feel loved and protected. Their lives have been shattered together with Peter and myself and they need to know I am there 100% for them.

Unfortunately, Peter is starting to show aggressive tendancies, both verbally and physically. At the moment it is all directed at me but it will only need one incident involving our children and I will be forced to make a very, very painful decision. Doesn't mean I love him any less but I can't let this illness destroy any more lives.

Sorry to go on but this is a very emotive subject for me.

Enjoy the sunshine with your boys.

x

 

[SHANDY]

dear kate

I really feel and understand what you are going through, my mom has been in a nursing home for 6 months now. her father also was in a home, but years ago no one had really heard of dementia, it was thought of as gone mad, so my mother always made me promise that i would never put her into a home. i am the only daughter and i have 2 brothers, my mother has always been my best friend, it broke my heart to do this, but my brothers and i watched as my dad coped , carers and all.
however, we noticed that my dad was starting to loose his temper with her, and mt brothers and i had to fight dad to put her into a nursing home - for her own safety! mt dad ran out of patients. Anyhow, she is now in a nursing home and our family is doing all we can to help her, we have a rosta so that we all know who's going and when. i must stress though, now we are having a terrible time with dad whos seems to be complaining at every opportunity about her care. she has recently broken her hip and is out of the hospital after having 2 screws in her hip, and yes my dad is creating holy hell. When you father gets to the end of his tether
and it will happen, this is the time to consider care for your parents sake and yours, don't feel guilty , as i did, we know my mom is being cared for without being shouted at all the time by my father.

good luck

shandy

 

[Skye]

Unfortunately, Peter is starting to show aggressive tendancies, both verbally and physically. At the moment it is all directed at me but it will only need one incident involving our children and I will be forced to make a very, very painful decision. Doesn't mean I love him any less but I can't let this illness destroy any more lives.

Sorry to go on but this is a very emotive subject for me.

Westie, you're absolutely right. It's a hard decision, but you and your kids have so much life in front of you. You mustn't allow them to be scarred by living with abuse.

It's an awful position to be in.

my mother always made me promise that i would never put her into a home. i am the only daughter and i have 2 brothers, my mother has always been my best friend, it broke my heart to do this, but my brothers and i watched as my dad coped , carers and all.

Shandy, that's an unfair promise to ask anyone to make. We none of us know what the future holds.

You made the promise in one set of circumstances, but those circumstances have changed. All anyone can really promise is to do their best to make sure the loved one is safe, cared for and as comfortable as possible.

You've done all that, and have no reason to feel guilty. You have also shown concern for your father's well-being, whether he appreciates it or not.

Love,

 

[Margarita]

When I was living in Gibraltar I had a friend who father had AZ , her mother was telling me one day her daughter left her 2 year with her , while the child was playing in the same room as her grandchild was making a lot of nose .

The grandfather went to the child and gave the child a slap across the face , she pick her grandchild up asking her husband why he done that , but his reaction was just to go into the toilet after 10 min he came out , she ask him again she said it was like nothing had happen, he had forgotten all about it

She told me no to tell anyone, but learn never to leave the child near her husband .

when she told me this . It was at the beginning of me caring for my mother and my youngest was 15 so it was not to bad , but I learn never to leave mum alone with them , mostly in the kitchen with them , as if she got angry with them or anything , all things could go flying at them .

my point is I don't thing that his behavior is seen as abuse , his not abusing that child or is anyone that has AZ/ dementia abusing they children / grandchildren as her husband has AZ , he can't help his reaction to a situation , I don't feel he has responsibility over his action, its not they felt .

In Gibraltar / spain they have a lot of expended family so they is not a lot of care home for them out they , so they look after the person with AZ at home , someone said about a rota . My friend use to do that as they was 5 daughters .

One daughter would look after the children , while the other daughter went around to they mother house , to look after they father while they mother went out half of the day , the daughters also all work so that why they set up a rota .

 

[Margarita]

and before someone take my words out of context .

I do agree totally when Westie says this

At the moment it is all directed at me but it will only need one incident involving our children and I will be forced to make a very, very painful decision.

Sadly yes it would be the right thing , because the responsibility lie with us not the person with AZ, to keep them safe avoiding then getting hurt .

 

[jackie1]

Westie, I really hope this aggressive period quickly passes, it must be so worrying for you.

John went through a phase of being very angry verbally towards me, then it was like he suddenly realised that if he lost me he'd be stuffed, so it was then directed at our eldest (9) (I think because he does so much for him and it was resentment and frustration coming out). Thank goodness that has passed, although he still can't stand any level of noise, which is a bit of a challenge with 2 full on boys .

I do agree with you if it were ever to become physical I will have to really review the situation.

 

[Nell]

Just wanted to say how deeply I feel about those of you who are partners and spouses of sufferers, and most especially those of you like Westie and Jackie with children.

I realise my answer to Kate may well have been upsetting to you and I am SO sorry. I was talking about caring for parents - and, in particular, young people caring for parents - especially those with children.

I am incredibly touched by the wonderful people on TP who DO care for parents (or in laws) - my admiration knows no bounds.

For those of you with partners / spouses, I can only ask your forgiveness for any hurt caused. The lack of choices - or the horrendous nature of those choices available - makes your situation even more difficult and stressful than for others.
Added to which you have been cheated of time together; your children are cheated by this disease, and you have the added responsibilities of caring for a partner AS WELL AS your children. You are AWESOME people - I hope you never lose sight of this fact.

I guess my original response was fuelled by annoyance / anger at those people who thrust the caring role onto someone else as "your responsibility". I just do not accept that. As Hazel says:
All anyone can really promise is to do their best to make sure the loved one is safe, cared for and as comfortable as possible.

 

[Westie]

Nell,

I didn't find your post upsetting at all. I think you have a marvellous way with words and manage to say just the right things!

Certainly don't think of myself as awesome either and neither would you if you had seen the shaking, quivering mess I was in on Friday. We all just do our best, day by day, and I think it is obvious that every person caring for a friend or relative has their own special set of circumstances to take into consideration.

Peter's dramatic action with the car has now resulted with emergency appointment tomorrow with the consultant's registrar. They are considering re-admitting him to an assessment hospital to stabilise new anti-psychotic medication he only started a few days ago.

Part of me is relieved but I also know Peter will be very unhappy to go so that will be hard. I'll wait and see what tomorrow brings.

x