Children and AD effects ont hier daily lives

[scared daughter]

Hi

I can see everyone seems to be having it really bad at the moment, I just wanted to ask for anyone elses experiences with how this effects your children?

I visited my mum on saturday and sepnt sunday with my own children, we had decided as my mother wouldn't know sat wasn't mothers day and as she has told everyone she hassn't seen me for years - that it wasn't worth ruining everyone elses day.

And there in lies the problem "ruin everyone elses day" this is now having a serious effect on my family life, we are already under more than enough pressure and financially witht he ever increasing cost of petrol and time being taken out of looking after my still quite young children - well at what point do you stop and think I can't do any more?

I can't take mum in she is unpredicatable and agressive, and I can't keep up what I have been doing without it having a massive effect on my children. Noone in my family would ever voice this to me - but my inner voice is saying who do you put first.

Has anyone else faced the guilt that is stepping back and sorting out your own children and family first tot he cost of your parent - grandparent? I can't afford to keep doing what I am doing on so many levels, my children need me and they cant keep being bundled in cars for four hours every round trip. It is a complete nightmare =o(

 

[Helen33]

I don't know whether this helps or not but I do remember facing and thinking something similar to you along the care route with my late husband.

I have a daughter and I always felt it important to make sure that the care needs didn't squeeze her out completely. I always felt it was important for her to have special times with her mum where I was concentrating just on her and not on Alan or dementia. I think it was easier for me because my daughter lives in a different city and this was not something I needed to do every week. I managed this until the care needs overtook everything and then my daughter put all her needs to one side and stood by my side until my husband died.

I do hope that you find a way Scared Daughter that is right for you. I will look forward to hearing about how you deal with it and I will be wishing you all the best.

Love

 

[Greensleeves]

Hello there, and sorry to hear of your problems. It is so difficult when children are involved. My husband's health has been deteriorating since our daughter was 12 - she is now 20 and at uni and my husband has recently entered a care home. The intervening seven years have been a nightmare for all of us.

It is unfortunate for me and my daughter that my husband's health started to deteriorate when he was in his 50s, which has totally blighted my daughter's teenage years. It was so difficult having friends round because of his unpredictable behaviour so she tended to shy away from close relationships with her peers; she cringed with embarrassment when we took him out and he caused a scene; she blamed him for his illness and I felt like piggy in the middle, trying to reconcile the two of them and failing miserably.

There is no easy answer.... it is just impossible to reach a compromise which suits both the ill person and the children. I found in the end that I veered towards protecting my daughter and trying to make her life more bearable. But I was really anxious that she should remember her 'real' father - the one who was there before dementia took him away. So I used to show her photos of the two of them together when she was little.... and she would just turn away and walk out the room, and refuse to talk about him.

But the other day out of the blue she just said how much she missed her dad and how much she had loved him. I can't tell you how happy that made me feel, and for the first time since she was 12, we were both able to discuss the situation and she was able to express grief rather than anger.

So as I said, there is no easy way - but trying to think along the lines of what your mum would have wanted for your children - were she able to express a lucid opinion - might help. Certainly I know my husband would have done absolutely anything for my daughter when he was well so I have tried to follow what he would have wanted for her. Whatever we do in these situations, we seem to drag along with us a huge burden of guilt; but we are all human and trying our best in awful situations. Don't keep beating yourself up about things - put your children first, as she would have done in other circumstances!

 

[Mameeskye]

Hi

My Mum was undiagnosed albeit in the early stages of something we were to learn was vascular dementia at the time I had infertility treatment and became pregnant with twins. By the time the boys were born, she was strange, but we thought that it was partly depression, as she felt "left out" having always had me to look after her.

Strange and angry phone calls followed the boys' birth and I was dealing with exhaustion, two babies and a Mum who seemed to completely lack empathy or understanding. My Health Visitor arrived through all this and told me, quite categorically that my babies had to come first, as they were the future and what happened to them now would impact on the rest of their lives.

We finally got a diagnosis for mum when the boys were 18 months. However, it doesn't lessen the guilt about not being able to be all things to all people. You find that you have to strike a balance. It is terrible to be so split, and, at a hard time in your life with young children needing a Mum and not having one.

You have to put your children first, in my experience. Then you slot what you can do for your Mum into that mix. You cannot be relied upon to be there when there are youngb children in the mix. For me, life improved when Mum was admitted to hopsital and discharged to a NH shortly after the boys 2nd birthday. She lived there until she passed away when the boys were about 6.5 years old. We tried to involve the boys in visits and were successful for a couple of years, but then Mum became too frail to handle them for more than a couple of minutes. So I would visit when they were at school, or early evening when Dad was home.

((((hugs)))))) it is an awful experience trying to juggle childcare, deal with the mental abuse you can get in the early days and doing it with the exhaustion that comes as a mother.

Love

Mameeskye

PS as a plus point the boys longer term (they are now 9.5) do not seem to have had any bad lasting effects from it...in fact it might have even made them more resilient at coping with what life throws at them!

 

[JoshuaTree]

I'm dealing with this right now. My two are still young at 8 yrs and 6yrs. Mum is only two mins down the road so it is easier for us in that way. You can't be expected to travel all that time with your children on a regular basis and like others said you do have to put them first.

 

[Missy]

I think the Health Visitor's advice to the poster of young children was spot on - the children have to come first. However, when it is your partner, rather than parent that has AD, this must be almost impossible to reconcile, so my heart goes out to all of you in this dilemma. I am in awe of how unselfish you all are - truly amazing individuals. Would that I had half you courage and compassion

 

[scared daughter]

thanks for the insights guys xx It is reassuring that other peoples children are not effected long term, I guess it is just so hard to know what is best to do.

I had thought I needed to try and slow down my visits and try and make the visits i do make much better.

I am clinging to the fact mum is less agressive to me now, she hasn't accused me of much ina a while, I'm still a bit edgy but she does seem to be calming, she is however alot less aware on a day to day basis.

It is so sad that our children loose their parents and grandparents in such cruel circumstances =o( My eldest child will remember granmmdma properly but i have shielded them so much of late. I hope they aren't too aware of whats going on at the moment =o(

 

[sistermillicent]

I believe completely that it is the children who come first. Having said this I was in a position last year when I had to walk out and leave my very distressed 18yr old son to go and help my parents with their house move 150 miles away. I had to be away a week looking after mum 24 hours a day.
It was hard, and my son is 18. It was the only time I had to leave when things were not okay at home, had they not been moving house I would not have gone.

As a child who was never a priority over anything my mother wanted to do I still sometimes feel as if I don't even exist as a real person. Don't do this to your children.

Pippa

 

[scared daughter]

Thanks Pippa,

I think the question is coming to a head as mums team are talking about letting her go home rather than put her in a home and see how she does - we (as in me my sister and all of mums pals) are seriosuly worried how can she go home when last week we were being told the only home that would have her is an EMI one =o(

I see a crisis on the horison and i know where my priorities lie, just wracked with guilt as usual xxx

 

[sistermillicent]

It isn't your fault that she has dementia. If the only home that will have her is an EMI one then so be it. My mum goes to one for respite and she likes it as well as she likes anywhere these days.

My doctor says nothing seems to happen with dementia until it gets to a crisis, and I have had a couple, my Dr has been marvellous and is very supportive of me, are you in touch with yours?
P x