Alzheimer's and Asperger syndrome

[Everton Annie]

Hi this is my first post. My husband was diagnosed earlier this year with early onset Alzheimer's at the age of just 65. I believe he has had this for the past three years at least. Two of my four sons have a diagnosis of Asperger syndrome/ADHD. The eldest moved out just about two years ago and the youngest (aged 24) still lives at home. As he doesn't receive a lot of outreach support he is often at home. The relationship between him and his dad can reach crisis point and ends in nose to nose screaming at each other. My husband then goes on a run of finding fault with him over the smallest thing and sometimes it is about a toilet not being flushed whereas in fact it is my husband who has forgotten to flush. It is like living on a knife edge trying to keep things balanced between them. We have begun to have a few days away from home on our own as we have found someone who can support my son with cooking a meal. Being away from home though can lead to tiredness and confusion for my husband.

Does anyone else have similar experiences? My son's lack of empathy because of his autism doesn't help and I do sometimes have to remind my husband that our son is autistic then I am accused of taking his side and so it goes on and on and .....

Any tips/advice or just some understanding would be really helpful. Thanks.

 

[Jessbow]

has you son considered supported living away from you and his dad?

 

[Beate]

It sounds like a toxic combination, as neither of them can help their behaviour and can't be expected to either. I agree that the solution probably lies in separating the two when it comes to living space.

 

[tryingmybest]

I feel for you, I really do and know exactly what you are saying. Dealing with both here too except its my mum with memory problems (as yet not formally diagnosed) and my fiancé with ADHD/Aspergers (still awaiting a formal diagnosis. When he gets stressed he is extremely difficult to live with but its constantly me he has a go at. I sometimes just want to run away and leave them both!! Hugs to you. I know I'm not much help! Xx

 

[Everton Annie]

Thanks for the responses. We are looking at supported living for my son but there isn't much in the way of services. Just getting him on our local housing list and then I have to apply for PIP as his DLA is coming to an end. On one hand my husband is supportive and then forgets what I am doing and resents the time not being given to him. Like you, trying my best, I sometimes would like to walk away and then I know because I love them both I can't. It can feel very lonely at times and I feel like when I get the chance to download I feel as if I am just moaning. Worse when family members think my husband is ok because we all forget things don't we?

 

[Danby Vermont]

Thanks for the responses. We are looking at supported living for my son but there isn't much in the way of services. Just getting him on our local housing list and then I have to apply for PIP as his DLA is coming to an end. On one hand my husband is supportive and then forgets what I am doing and resents the time not being given to him. Like you, trying my best, I sometimes would like to walk away and then I know because I love them both I can't. It can feel very lonely at times and I feel like when I get the chance to download I feel as if I am just moaning. Worse when family members think my husband is ok because we all forget things don't we?

Hi Everton Annie, I know exactly what you are going through. Similar circumstances, we have a daughter living at home and many times I am caught in the middle of face to face screaming. Very stressful. My husband has never been diagnosed but all the behaviors and characteristics of Asperger's Syndrome have always been there. Now the mental decline, confusion, makes things worse. Don't ever think you are moaning, just unloading some of the stress, loneliness, and fatigue that these kinds of relationships fill us with. I wish I could give you some tips, but I don't have any myself other than to encourage you to take care of yourself and make some time everyday to nurture something that you like, so you can feel better and have the strength to continue being a caretaker.

 

[Cat27]

Hi Everton Annie, I know exactly what you are going through. Similar circumstances, we have a daughter living at home and many times I am caught in the middle of face to face screaming. Very stressful. My husband has never been diagnosed but all the behaviors and characteristics of Asperger's Syndrome have always been there. Now the mental decline, confusion, makes things worse. Don't ever think you are moaning, just unloading some of the stress, loneliness, and fatigue that these kinds of relationships fill us with. I wish I could give you some tips, but I don't have any myself other than to encourage you to take care of yourself and make some time everyday to nurture something that you like, so you can feel better and have the strength to continue being a caretaker.

Welcome to TP

 

[tryingmybest]

How are things Everton Annie? X

 

[Everton Annie]

How are things Everton Annie? X

It's a while since I have looked at Talking Point. My son tries to keep out of the way most of the time and I try to predict outcomes, not always successfully. Husband seems to get fixed ideas about our son still. Hoping our son can move out soon for his own sake no young person should have to live as he does. Thank you for the support and Happy New Year

 

[Jonny1]

My dad had Parkinson's disease which became dementia. My mum has Alzheimer's. Both of my sons are autistic. I feel for you - any of these conditions are so difficult - together the combination is verging on the impossible. I will have a think tonight about some of the coping mechanisms we have used and will post back

 

[fizzie]

Annie it would be worth you looking at Carers cafes - they are excellent in our area (same county as you ) and have loads of info and friendships.
Have you had a carers assessment so that you get a break too?

This sounds so difficult - it is hard enough coping with one difficulty but to have two such different ones must feel like you are being pulled around all the time and of course any rows and arguements just add to dementia confusion because it is on overload!

If I can think of anything else locally I'll pm you
Take care

 

[Everton Annie]

Hi Everton Annie, I know exactly what you are going through. Similar circumstances, we have a daughter living at home and many times I am caught in the middle of face to face screaming. Very stressful. My husband has never been diagnosed but all the behaviors and characteristics of Asperger's Syndrome have always been there. Now the mental decline, confusion, makes things worse. Don't ever think you are moaning, just unloading some of the stress, loneliness, and fatigue that these kinds of relationships fill us with. I wish I could give you some tips, but I don't have any myself other than to encourage you to take care of yourself and make some time everyday to nurture something that you like, so you can feel better and have the strength to continue being a caretaker.

Thanks for responding Danby. I also think my husband is undiagnosed Asperger syndrome and yes it does make things like the inflexibility much worse. Interesting how many people say I can talk to them but actually I want to talk about things other than Autism and Alzheimer's and I don't mean to be ungrateful but I live with it as you do every day. Hopefully we will find ways forward and I will know I am not alone and that makes a difference x

 

[Everton Annie]

Annie it would be worth you looking at Carers cafes - they are excellent in our area (same county as you ) and have loads of info and friendships.
Have you had a carers assessment so that you get a break too?

This sounds so difficult - it is hard enough coping with one difficulty but to have two such different ones must feel like you are being pulled around all the time and of course any rows and arguements just add to dementia confusion because it is on overload!

If I can think of anything else locally I'll pm you
Take care

Hi Fizzie yes we do go to an art class (Turning Point) and Singing for the Brain and an EOAD support group. Haven't done the cafe yet but may do next month. Keep being asked if I want a CA but really best thing is to sort my son out. Thanks for the support.

 

[Everton Annie]

My dad had Parkinson's disease which became dementia. My mum has Alzheimer's. Both of my sons are autistic. I feel for you - any of these conditions are so difficult - together the combination is verging on the impossible. I will have a think tonight about some of the coping mechanisms we have used and will post back

Thanks Jonny all these comments show I'm not alone. Also highlights what we have said for years about caring for our autistic children, I also have 2, that no-one thinks about what happens when we get older and get all the problems age brings and find it difficult to care for our children and parents and partners.