Dementia - early stages

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I find that I can get no help, advice or training on how best to support my wife with the early stages of Alzheimers. So far the most stressful period was when I believed she was suffering from dementia - there were indications in 8 of the common symptoms.

For months our GP and my wife's mental health team refused to speak to me. It was only when I attended the same Pdsychiatrist for severe depression that he told me my wife had dementia - Alzheimers - that this stress was eased. My wife has not yet been told of the diagnosis and believes my concern is just a sympton of my Anxiety and Depression (now well controlled with medication and therapy).

At present I just make my wife as happy as possible, never argue with her, follow her somewhat chaotic decisions and over-rule where the result would be unacceptable. I have no idea if such a policy is the best or not.

A further problem is that we are not preparing ourselves for the future. Downward progress is slow but noticeable to me.

I should be grateful to learn of others' experiences and wisdom on this early stage. On the whole the house works tollerably well and we remain a happy couple.

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  • Posted

    Hi Poet,

    My Mum (of 80) has it too. She now lives with us. It became apparent a couple of years ago that she wasnt coping with cooking etc any more so we had been feeding her supper for a couple of years before she moved in 9 months ago. Conversations can be tricky so I keep them short and simple. Smiling lots seems to help. Things get lost a lot so I try and keep them in a regular place. (I keep the tracker on her iphone on so I can locate her if she has disappeared for hours too) Technology is particularly frustrating for her, so be prepared to go over it again and again every day. Not much is retained and what is retained is often confused. Food is still very enjoyable for her though, so I try and make everything really home cooked and very nutritious. Lots of smoothies and soups done in the blender are tasty and easy to eat and very nourishing. I have given her supplements to keep her in the best possible health as long as possible. She is not taking any meds from the doctor other than for blood pressure. She seems particularly confused in the evening and so she likes to just get showered and go to bed after supper, which is probably because her brain is exhausted and she needs to rest. I rarely bother to counter her views as I have heard it distresses them to do so. She is very resistant/stubborn and easily gets depressed about all sorts so I figure it's just better for her to believe whatever she believes. Thats fine, it doesnt affect anything. She likes to feel productive/useful and she still remembers how to iron, so seems to do a bit of folding clean laundry and ironing most days......this is a bonus for me as ironing is definitely not high on my list of enjoyable activities!

    I feel with good nutrition, daily walking and key supplements she has not got too much worse....... the deterioration is not rapid. Clearly there will come a stage when we will need some help, but for now things are ok.

    We had a stair lift put in when she first moved in because she had a lot of pain moving, having had a bad fall again. But she rarely uses it as she is now in good shape physically again. We just have to keep her in the best possible health and as happy as possible for however long she may live. If we need to adapt the house a bit with a wet room etc we can deal with that when the problem arises.(She doesnt like to face the fact currently, that she will deteriorate - so we just don't go there.)

    Hope this helps , WhiteCliffs x

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    • Posted

      Thank you WhiteCliffs, your note is very supportive and helpful. I recognise many aspects in common and we seem to deal with the symptoms in much the same way. Your mother is a little ahead of my wife in deterioration; I am glad she can still be happy and that encourages me.
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    • Posted

      One thing that I forgot to say and I believe it's probably linked to happiness, is that I try and encourage her to maintian her friendships as much as possible. She tends to forget to contact people under her own steam, so a gentle nudge to get them together for a cuppa helps. 

      You may have some kind of lunch club or similar facility you could dip into as  another way of keeping  socially involved. You may need to be prepared to go too though as social situations seem to create anxiety in my Mum.

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    • Posted

      Thank you. My wife is still managing to attend groups of friends but she is finding it increasingly difficult. Special groups for dementia she refuses as she does not accept that she has dementia. That adds to my difficulties and prevents me attending groups at which I might meet other carers.

      An added problem is that I am rather deaf and sensitive to loud noise.

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    • Posted

      I recognise everything you say, the only differance is that I'm a sufferer. I don't look forward to the future but try to stay positive. I've told my consultant I'm prepared to try anything. I hate the person inside my head and get down in the dumps often. I'm on meds in the hope that they'll make life easier, hopefully they wil come up with something, who knows??

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  • Posted

    Thank you WhiteCliffs. Your note is very helpful. There are many common factors.
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    • Posted

      You're most welcome. I haven't tried to access any official assistance yet as everything is currently being managed ok, but I guess provision will vary from area to area. I really do hope there is some help available for folks who need it. Both the condition itself and caring for someone with it can be a pretty isolating experience, so I think reaching out (and also using the internet) has to be the best way forward.

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  • Posted

    Dear Poet

    I’m so sorry that you’re having to go through this [SD1] alone. I can really empathise because my mother is now in the end stages of Alzheimer’s after a 12 year battle with his terrible disease.

    I don’t know where you live but in Australia we have a national help an information service called Alzheimer’s Australia (fightingdementia).

    The website alone might be worth a visit if you live overseas from me. And it’s likely that you have a similar organisation in your country – Google it. They are extraordinarily helpful from the beginning to the end and everything in between.

    What you’re doing is the right thing at this early stage but you are going to want to be prepared for what is to come, which varies enormously between sufferers. For example we were advised to get the legalities done ASAP – that is a legal will for each of you and Powers of Attorney Medical and Legal (these are usually two separate documents). You will need probably legal assistance to do these. The reason for taking care of these legalities early is that your wife needs to legally competent to sign them.

    As the disease progresses your wife is likely to start to exhibit some very challenging behaviours, unpredictable because of the individuality of the disease. But for example my mother cried an awful lot, was terribly disoriented and wouldn’t settle and also wandered off a lot. All of this was difficult to manage at home and it got a lot worse until eventually she had to be placed in a specialised nursing home. Respite care for carers is also available through local councils here.

    I’d urge you to really make some enquiries about what help is out there and start planning and getting some supports in place.

    All the best. You are not alone.

    Sarah

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    • Posted

      Dear Sarah, 

      Thank you for your kind and helpful reply. I missed seeing your reply some five months ago. I have been struggling with severe depression; at last I am becoming a little more active. Your advice is helpful. There is an Alzheimers website in UK. I am rather restricted in gaining none website help. My wife knows she has been diagnosed with MCI; actually, she has been diagnosed with Alzheimers but will not be told until she asks her GP or psychiatrist "Do I have dementia". I have attended one group session for carers; I passed it off as treatment for my Anxiety/Depression. I find the odd quirks in her behaviour and thinking stressful; most stressful is the first time a new quirk appears. 

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  • Posted

    Hi poet,  it is so hard isn't it? I find that everyone is talking about dementia, but it's all about the 'big picture'. My Dad saw several specialists but because he did not fit the particular criteria for the kinds of research they were doing they were not that interested in him and was pretty much left to flounder.  He hasn't seen a specialist since being diagnosed with FTP four years ago. There definitely needs to be more support. Websites of Alzheimer's organisations have some helpful articles. I hope they at least took the time to diagnose her properly, taking into account any medications etc she may be on that could affect her etc..  She is fortunate to have you to look after her.

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    • Posted

      Dear Deborah,

      I am sorry I missed your kind note some five months ago. I have been struggling with severe depression and managing to do very little day by day. My wife was properly diagnosed. She tried Donepezil but the disagreed with her. No other drugs were tried and she was discharged from the clinic with a diagnosis of MCI. However a few months later her psychiatrist, who was treating me for depression, told me that she has Alzheimers. I learned later that she will not be told that she has Alzheimers unless she asks the psychiatrist or GP  "Do I have dementia?"

      So she looks after me and I look after her. Her abilities are declining with noticeable changes month after month; happily I am able to take on more. We still do quite well together.

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