questions

[Debz5564]

hi, my husband has been diagnosed with mixed demetia but very basic only over the phone. the lady that did the tests is coming to visit us on tuesday to explain in more detail and i have a note pad at the side of me thinking about the questions i want to ask her but i have not wrote anything down.
i feel i have loads of questions but cant put it down on paper.
any advise on what i should be asking would be appreciated, i think i am in shock and a bit overwealmed but really dont want to miss the opportunity to ask .

 

[Sue741215]

Welcome Debz to the club no-one wants to join!
I would ask for:

A clear explanation of what the mixed dementia consists of (I would try and write the answer to this down as it may help if you want to apply for care or benefits.

The likely changes in your husband as a result - I doubt you will get much of an answer to this as everyone varies and I guess it is even more difficult with mixed dementia.

What help is available - my husband was just discharged to the Gp and I was told I could contact the memory clinic if I needed help. I was also contacted by the Alzheimer's society to see what information or help I needed but at that time I did not need anything really as i had previous experience with my mother. However I would advise you to see what they can offer especially if you need help with benefits , care or power of attorney or even just general support for you.

I don't know if your husband drives but for us that was the big one as he was told to stop driving pending an assessment. The previous week he had driven 500 miles on a holiday in Devon so this was a shock to both of us. Despite his driving a lot without incident he did fail the assessment and was unable to drive again. He absolutely loved driving and had always driven a lot so this was a massive blow to him. I only say this to prepare you in case this is a potential issue for you. I would say this was my greatest shorter term concern and after a bit of a fraught time when I had to drive away his car and sell it he has now settled down about it and enjoys going out for a drive even though I am driving.

I hope if I tell you about my situation it may help you a little to see that there is life after a diagnosis.
I don't know how bad your husband is but in out case my husband's decline is gradual and we are still having a good life. He has always been pretty laid back and I'm not sure if because of this or because of the memantine he was prescribed that he seems quite contented with life and thanks to family and friends we still have an active social life and go on holiday 3 years after his diagnosis.

Also please look after yourself as well as him as this will benefit both of you. if you can make room in your life for your own needs - eg time to yourself to be alone or to see friends alone as well as with him. Routines are important to many people with dementia and will become embedded so if you can set routines early on that you spend time apart even when you are at home and have set times when you see friends it may be beneficial later on. Having read about those carers further on in the journey I may be being unduly optimistic about this but let's face it I might as well be optimistic if I can.

My other advice - hard though it is would be to live for the present -you both deserve any treats that are possible - put things in place for the future where you can but don't dwell on the future - face each step as it happens.

I hope your meeting next week goes well and that once the shock has worn off you will both find a way of living with dementia for a few years at least.

 

[Debz5564]

Welcome Debz to the club no-one wants to join!
I would ask for:

A clear explanation of what the mixed dementia consists of (I would try and write the answer to this down as it may help if you want to apply for care or benefits.

The likely changes in your husband as a result - I doubt you will get much of an answer to this as everyone varies and I guess it is even more difficult with mixed dementia.

What help is available - my husband was just discharged to the Gp and I was told I could contact the memory clinic if I needed help. I was also contacted by the Alzheimer's society to see what information or help I needed but at that time I did not need anything really as i had previous experience with my mother. However I would advise you to see what they can offer especially if you need help with benefits , care or power of attorney or even just general support for you.

I don't know if your husband drives but for us that was the big one as he was told to stop driving pending an assessment. The previous week he had driven 500 miles on a holiday in Devon so this was a shock to both of us. Despite his driving a lot without incident he did fail the assessment and was unable to drive again. He absolutely loved driving and had always driven a lot so this was a massive blow to him. I only say this to prepare you in case this is a potential issue for you. I would say this was my greatest shorter term concern and after a bit of a fraught time when I had to drive away his car and sell it he has now settled down about it and enjoys going out for a drive even though I am driving.

I hope if I tell you about my situation it may help you a little to see that there is life after a diagnosis.
I don't know how bad your husband is but in out case my husband's decline is gradual and we are still having a good life. He has always been pretty laid back and I'm not sure if because of this or because of the memantine he was prescribed that he seems quite contented with life and thanks to family and friends we still have an active social life and go on holiday 3 years after his diagnosis.

Also please look after yourself as well as him as this will benefit both of you. if you can make room in your life for your own needs - eg time to yourself to be alone or to see friends alone as well as with him. Routines are important to many people with dementia and will become embedded so if you can set routines early on that you spend time apart even when you are at home and have set times when you see friends it may be beneficial later on. Having read about those carers further on in the journey I may be being unduly optimistic about this but let's face it I might as well be optimistic if I can.

My other advice - hard though it is would be to live for the present -you both deserve any treats that are possible - put things in place for the future where you can but don't dwell on the future - face each step as it happens.

I hope your meeting next week goes well and that once the shock has worn off you will both find a way of living with dementia for a few years at least.

Thank you for taking time to reply, we are really shocked and scared at the moment
things are not too bad at the momen, it’s little changes I’m noticing.
my husband rarely drove and we decided to stop him before we got the diagnosis as his reactions and judgment is not as quick as it was so driving is not really an issue.
at the moment we both work so do get time apart and I want my husband to work for as long as he can until it actually affects his job
i am finding it hard at the moment to live day to day as I have experienced dementia with my aunty and I’m in bits that it is going to happen to my husband.
on a positive point my husband has took the news very well (not sure if he really understands) his mood is very good which is good for him but it’s making me feel very alone about the problem.

 

[Sue741215]

Of course you are shocked and scared - you are obviously a lot younger than me as we are both retired - so it will have been a bigger shock. In other ways your story is similar - I had experience with my mother as you did with your aunty. I too am glad that my husband seems to be happy and accept, not recognise or simply ignore his problem -(I'm not sure which) so I totally understand your sense of being alone with the problem. I hope you are able to share it with friends or family who can support you. Initially I did not tell people about his diagnosis as I felt people would respond differently to him if they knew and I felt he wouldn't want them to know. Since I have started to talk to people about it I have found that nearly everyone has a relative with dementia or similar and so are helpful and supportive.

I wish I could do something to help you but unfortunately there is not anything that can change the diagnosis and that is what we all want really. I found it helpful to read certain books - Contented Dementia by Oliver James and two books by Wendy Mitchell who is living with dementia. I have registered with a research study site in the hope that he could get access to drug trials but he is not suitable so far due to other conditions. Not an easy decision anyway whether to take part so at least I am spared one decision.

The shock will pass to some extent and you will find your new normal - all you can do is make it the best life for both of you that you can. I send my best wishes and sympathy to you both

 

[Debz5564]

Of course you are shocked and scared - you are obviously a lot younger than me as we are both retired - so it will have been a bigger shock. In other ways your story is similar - I had experience with my mother as you did with your aunty. I too am glad that my husband seems to be happy and accept, not recognise or simply ignore his problem -(I'm not sure which) so I totally understand your sense of being alone with the problem. I hope you are able to share it with friends or family who can support you. Initially I did not tell people about his diagnosis as I felt people would respond differently to him if they knew and I felt he wouldn't want them to know. Since I have started to talk to people about it I have found that nearly everyone has a relative with dementia or similar and so are helpful and supportive.

I wish I could do something to help you but unfortunately there is not anything that can change the diagnosis and that is what we all want really. I found it helpful to read certain books - Contented Dementia by Oliver James and two books by Wendy Mitchell who is living with dementia. I have registered with a research study site in the hope that he could get access to drug trials but he is not suitable so far due to other conditions. Not an easy decision anyway whether to take part so at least I am spared one decision.

The shock will pass to some extent and you will find your new normal - all you can do is make it the best life for both of you that you can. I send my best wishes and sympathy to you both

thank you so much for your reply, it is nice to know there are people out there to talk to
sometimes its easier to talk to strangers than family.
our family and friends do know as close family noticed changes in steve the biggest one is he is now very quiet when in company and he seems tired all the time and they have seen the stage where i was getting very frustrated with him as i didnt really know what was going on but i am more patient now as i know he cant help it.
i am 57 and my husband is 66, my husband was very old fashioned and a gentleman and i am missing that side of him.
i am actually going through a cancer scare at the moment and feel more alone as my husband doesnt seem to care but i know deep down he does but he forgets whats going on which i suppose is good for him as it takes the worry away. my husband was quite stressed and short fused before this so i suppose i should be grateful that he has mellowed and seems to be going the opposite of his personalitiy, quieter less argumentative ( i dont mean that any of that was a problem it is just strange how he has changed ) we have been together 35 years and i thought i knew him really well but seeing a side of him that i dont really know.
i know i need to concentrate on now but really struggling as all i think about at the moment is what the future for us is going to be like for us as a couple.
i feel we are a strong couple he beat prostate cancer 5 years ago and i feel its unfair now to go through this and i honestly dont know if i am strong enough to cope.
sorry if i have given you earache but it feels good to get it off my chest.
which demetia does your husband have? what changes did you notice first and how long ago ?

 

[Sue741215]

Hi Debs Glad if I have been of small help. It is good for me also to find someone whose situation is so similar to mine. My husband also has Alzheimers which was diagnosed about 3 years ago. He also has lymphoma which started with a tumour on the spine about 12 years ago and separate tumours on each eye. The brain scan to look at his eye was what revealed his Alzheimers. I remember as the consultant started to tell me I was thinking - please let it be a brain tumour (as that can be cured) but not being surprised at the Alzheimer's. It is difficult to say when I first noticed - it was so gradual - 2-3 years or so before the diagnosis 3 yrs ago. Like you I initially felt annoyed with him - he became grumpy and set in his ways and I told him he was becoming an old man. Now he is so good natured and has gone back to his easygoing self - whether that is the Alzheimers or the Memantine I don't know. I had a theory that people become more like themselves ie if quick tempered to start with they may be more so but your case suggests otherwise so perhaps it is the Memantine. see - I've already learned something from you - so thankyou!

I am 72 and he is 74 so we were both more or less retired - he insisted on working full time in our business - we brought his son into the business and that was very difficult when he refused to retire so we had to push him into it. Being retired meant that at least we have our pensions sorted and are lucky enough to not have to worry about finances whereas with you both working at present that may be an added worry.

None of us know if we are strong enough but really we have no choice - I did allow myself a slight running away fantasy but knew that would not make me happy and there was no way I could do it. I think things will settle down a bit - I tell myself it is a project and I will deal with each problem as it arises. I think I said before I worried for months / years? about how he would cope with giving up work and later driving but when the time came it wasn't as bad as I expected. I know there are massive issues ahead but I can't deal with those until they arise.

I also tell myself:
I have a ready made excuse for getting out of things or leaving early when I've had enough.
I have a happy contented husband who never criticises me and every meal I make him is 'very tasty'. Some of my friends have husbands that seem much more trouble.
I can choose everything I buy for the house and our new car without having to agree it with anyone - the downside is I have no-one to discuss it with of course.
I have someone who asks me every morning if I slept well and each night tells me he hopes I get a good sleep.-
I am finding how kind and helpful people are when you share your situation.

Maybe I'll tell you about the things that really annoy me one day but today I'm hoping to lift you. Of course I could tell you my husband's joke that he tells to all and sundry but I'll spare you that.

More seriously it might be helpful to try and break down your worries and write them down - then look at what you need to deal with now. Dealing with one or two practical things might help you to feel that you can cope.
Power of Attorney is the first step if you haven't already got it - I was lucky that after my mother's dementia I arranged ours early. It is not difficult to do on line.
I think you would also benefit from talking to Dementia support who are used to dealing with the shock and fear stage and will be better able to advise you than me.
I can't decide if it is good to read this forum or not but maybe keep away from the late stage stuff at the moment - you don't need to worry about that until it happens and you have a life to live before then.


I'll keep an eye on your posts and if you have any questions that I can help with I would be more than happy to try and help. I am also more confident than you are at the moment that you can do this.

Hugs and best wishes to you both - if you don't mind me hugging your husband!

 

[Debz5564]

Hi Debs Glad if I have been of small help. It is good for me also to find someone whose situation is so similar to mine. My husband also has Alzheimers which was diagnosed about 3 years ago. He also has lymphoma which started with a tumour on the spine about 12 years ago and separate tumours on each eye. The brain scan to look at his eye was what revealed his Alzheimers. I remember as the consultant started to tell me I was thinking - please let it be a brain tumour (as that can be cured) but not being surprised at the Alzheimer's. It is difficult to say when I first noticed - it was so gradual - 2-3 years or so before the diagnosis 3 yrs ago. Like you I initially felt annoyed with him - he became grumpy and set in his ways and I told him he was becoming an old man. Now he is so good natured and has gone back to his easygoing self - whether that is the Alzheimers or the Memantine I don't know. I had a theory that people become more like themselves ie if quick tempered to start with they may be more so but your case suggests otherwise so perhaps it is the Memantine. see - I've already learned something from you - so thankyou!

I am 72 and he is 74 so we were both more or less retired - he insisted on working full time in our business - we brought his son into the business and that was very difficult when he refused to retire so we had to push him into it. Being retired meant that at least we have our pensions sorted and are lucky enough to not have to worry about finances whereas with you both working at present that may be an added worry.

None of us know if we are strong enough but really we have no choice - I did allow myself a slight running away fantasy but knew that would not make me happy and there was no way I could do it. I think things will settle down a bit - I tell myself it is a project and I will deal with each problem as it arises. I think I said before I worried for months / years? about how he would cope with giving up work and later driving but when the time came it wasn't as bad as I expected. I know there are massive issues ahead but I can't deal with those until they arise.

I also tell myself:
I have a ready made excuse for getting out of things or leaving early when I've had enough.
I have a happy contented husband who never criticises me and every meal I make him is 'very tasty'. Some of my friends have husbands that seem much more trouble.
I can choose everything I buy for the house and our new car without having to agree it with anyone - the downside is I have no-one to discuss it with of course.
I have someone who asks me every morning if I slept well and each night tells me he hopes I get a good sleep.-
I am finding how kind and helpful people are when you share your situation.

Maybe I'll tell you about the things that really annoy me one day but today I'm hoping to lift you. Of course I could tell you my husband's joke that he tells to all and sundry but I'll spare you that.

More seriously it might be helpful to try and break down your worries and write them down - then look at what you need to deal with now. Dealing with one or two practical things might help you to feel that you can cope.
Power of Attorney is the first step if you haven't already got it - I was lucky that after my mother's dementia I arranged ours early. It is not difficult to do on line.
I think you would also benefit from talking to Dementia support who are used to dealing with the shock and fear stage and will be better able to advise you than me.
I can't decide if it is good to read this forum or not but maybe keep away from the late stage stuff at the moment - you don't need to worry about that until it happens and you have a life to live before then.


I'll keep an eye on your posts and if you have any questions that I can help with I would be more than happy to try and help. I am also more confident than you are at the moment that you can do this.

Hugs and best wishes to you both - if you don't mind me hugging your husband!

omg thank you so much, i have already sent power of attorney off and seperated our savings and we have a busy day today.
we have the dementia nurse coming this morning to discuss the diagnosis in more detail and this afternoon we have a financial advisor coming to help with other finances mainly our house.

i know i say i wont cope but i am sure i will, once the scare factor has subsided i am sure i will be ok and do what i need to do as and when it is needed.
i am a worrier and know i need to take things one day at a time and enjoy my husband while he is able to enjoy things.
we went to our sons yesterday , i had a lovely time with our 2 grandaughters (18 months and 4 week old) my hubby spent most of the time sat at the dining table asleep, didnt join in the conversation or interact with the girls.
when we got home he was happy and dancing about.
the day before our 2 gransons was at our house and he was interacting with them so i am thinking he is more comfortable at home at the moment. but i have read that socialising is a good thing so i will continue to nicely force him to visit our sons with me haha.
i really dont mind you telling me the things that annoy you, i am a good listener
sending hugs and best wishes back and thank you so much once again x