Dementia - early stages

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

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

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

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.

This note is really helpful.

Poet – It’s heartwarming to see that you care so much for your wife and her happiness. That’s terrible about her mental health team – medical professionals should always be working for the greater good and not holding any sort of grudge. Its very important that you discuss the situation with your wife openly so as to gradually build comfortability with the subject. If you are looking for a safe, alternative treatment for her cognition, check out Stem Cell of America. They have helped many patients deal with Alzheimers, and even can give treatment to those simply seeking cognitive enhancement. Best of luck and I hope the future holds good things for the both of you.