Unconfirmed type of Dementia

[John Mcfarlan]

I wonder if any members can recognise my wife's symptoms. She refused to go to the doctor's for years and eventually.

I didn't force it as I don't see the point in making her confront it head on. I got her diagnosed with dementia of an indeterminate type by our Mental Health Nurse under cover of a regular domicile visit to check on us at age 68 a year back.

She seems to have lost all her nouns and can't describe what she wants or what she is looking for. Has several totems she needs to know the whereabouts of...purse, Colm, glasses. Worries about money. I keep £100 in small notes in her purse as reassurance for her. If she tries to tell me something, she often loses track of what she is saying inside 20 seconds. Refuses to bathe or change clothes without much cajoling. A shower once a week is about it and we rotate three or four tops and sets of leggings at best. Seems to have lost affection for me and family. Doesn't want to visit daughter and grandkids. Mood swings leading to unpleasantness towards me in public. Usual inability to know where she is, the day, where we are going etc.
Starting to have problems in eating meals..knowing which cutlery to use, dissection of food on plate and how to eat it.

It appears to me to be Alzheimer's with a advanced loss of communication skills.

Jus wondering if anyone else has seen similar and what the progressio was.... forewarned being forearmed

Thanks for any replies.

 

[lollyc]

My mother had some similar symptoms, and had been diagnosed with a "non specific" dementia - which I understood as "she has dementia but we don't know why". Scans etc were unremarkable, but didn't point to vascular or AZ. Mum lived for 5 years. Her mobility gradually decreased, then she had a fall and broke her leg that left her almost totally immobile.

I think one of the most difficult things to cope with as a carer, is the simply not knowing how long this will go on, or what will happen next. Even with a specific diagnosis, dementia, of all types, seems to march to its own tune.

 

[Sad_Eric]

I wonder if any members can recognise my wife's symptoms. She refused to go to the doctor's for years and eventually.

I didn't force it as I don't see the point in making her confront it head on. I got her diagnosed with dementia of an indeterminate type by our Mental Health Nurse under cover of a regular domicile visit to check on us at age 68 a year back.

She seems to have lost all her nouns and can't describe what she wants or what she is looking for. Has several totems she needs to know the whereabouts of...purse, Colm, glasses. Worries about money. I keep £100 in small notes in her purse as reassurance for her. If she tries to tell me something, she often loses track of what she is saying inside 20 seconds. Refuses to bathe or change clothes without much cajoling. A shower once a week is about it and we rotate three or four tops and sets of leggings at best. Seems to have lost affection for me and family. Doesn't want to visit daughter and grandkids. Mood swings leading to unpleasantness towards me in public. Usual inability to know where she is, the day, where we are going etc.
Starting to have problems in eating meals..knowing which cutlery to use, dissection of food on plate and how to eat it.

It appears to me to be Alzheimer's with a advanced loss of communication skills.

Jus wondering if anyone else has seen similar and what the progressio was.... forewarned being forearmed

Thanks for any replies.

Hi John

I am in a similar position as you, there are differences with my wife but the general progress is the same. I too have no idea what is going to happen next, I just try to make each day as interesting for my wife as possible (each day now is important).
I think the issue for you is losing someone to talk with. Maybe this site will help.

 

[maggie6445]

Hu

I wonder if any members can recognise my wife's symptoms. She refused to go to the doctor's for years and eventually.

I didn't force it as I don't see the point in making her confront it head on. I got her diagnosed with dementia of an indeterminate type by our Mental Health Nurse under cover of a regular domicile visit to check on us at age 68 a year back.

She seems to have lost all her nouns and can't describe what she wants or what she is looking for. Has several totems she needs to know the whereabouts of...purse, Colm, glasses. Worries about money. I keep £100 in small notes in her purse as reassurance for her. If she tries to tell me something, she often loses track of what she is saying inside 20 seconds. Refuses to bathe or change clothes without much cajoling. A shower once a week is about it and we rotate three or four tops and sets of leggings at best. Seems to have lost affection for me and family. Doesn't want to visit daughter and grandkids. Mood swings leading to unpleasantness towards me in public. Usual inability to know where she is, the day, where we are going etc.
Starting to have problems in eating meals..knowing which cutlery to use, dissection of food on plate and how to eat it.

It appears to me to be Alzheimer's with a advanced loss of communication skills.

Jus wondering if anyone else has seen similar and what the progressio was.... forewarned being forearmed

Thanks for any replies.

Hi @John Mcfarlan , your description of your wife is almost identical to my OH . We don't have mood swings and I'm able to shower him every day but it takes a lot of cajoling and I think a lot of people would settle for weekly!

You ask about progression. My OH is just starting with toileting difficulty. Now using pull ups at night as he doesn't always get to the toilet on time. If you haven't already I'd get a waterproof mattress protector. In fact, I have two on the bed at the same,plus a Kylie bed pad, so I can remove one with sheet if wet and put a dry sheet on. Much quicker in the night if 'pull up' leaks. Cleaning after bowel movement needs checking as he doesn't always do a good job .
I'd read about the above on this forum sometime ago I'm so glad I was prepared!
I also use' no rinse, no water' wash products as he doesn't like go under the water in the shower. He was getting out covered in soap bubbles.! Use Omnitex/ Senset/Nilaqua depending on cheapest. All do a similar job

Not everyone progresses the same, not everyone will have same issues. My OH was diagnosed Alzheimer's with possible Lewy Body.
Best wishes to you as you go on this journey

 

[Chizz]

Yes @John Mcfarlan your description of your wife's decline is pretty standard, I'm sorry to say.
Each PWD's decline is slightly different, some with up and downs, some losing skills in different order, different levels of frustration and how it's shown, different levels of talking or not talking (ie with non words and sounds) and repetitions, etc, etc plus lack of co-ordination, difficulty with balance, then walking, knocking their confidence, etc etc Can't follow instructions. Then lack of interest in doing things, can't process things quick enough, so can't follow conversations, tv programmes, etc. Seems music is one of the last things to be lost.
Lots of details you can look up on the Alz's Soc website, plus, of course, Dr Google - some set out stages of the illness, but times for degeneration vary.
The brain malfunctions and mixed or non messaging gradually spreads through the brain and affects incontinence, appetite, etc.
Then there's how everybody else sees it - so friends lose interest, making isolation and loneliness for both of you, who can't even talk with each other. It's also common for a PWD to lose empathy - they concentrate on what they are trying to do, or want to do or what's around them, and don't even think how you are or how anything else is or what else may be happening - beyond their limited circle and shrunken world.

Best wishes. An arm around your shoulder, mate. May sure you look after yourself, both physically (do some exercise/walking/etc) and mentally (do arrange some short breaks even if 30 minutes reading, or in the garden where your mind can be absorbed by something other than caring/washing/cleaning/cooking etc)

Sorry for pointing out what you already know.

 

[maggie6445]

Hi John

I am in a similar position as you, there are differences with my wife but the general progress is the same. I too have no idea what is going to happen next, I just try to make each day as interesting for my wife as possible (each day now is important).
I think the issue for you is losing someone to talk with. Maybe this site will help.

Hi @Sad_Eric , sorry to hear about your wife. My OH is very similar. Losing your confidante and companion is difficult. My OH talks nonsense for the most part but I also find some of his comments amusing as he confuses nouns. I suppose it's the humour that keeps me going and I know he would find it amusing too if he knew! He was a funny and witty man , kind and compassionate .
We go to singing, dementia games sessions and dementia coffee clubs. They are my lifeline as I meet other carers. Never dreamt that retirement would be like this!
Best wishes

 

[John Mcfarlan]

Thanks for the support to everyone. In particular the practical tips on managing hygiene. Come summer I'll just take her into the garden and hose her down! Kidding😊But maybe a hot tub? Or a massage shower might encourage use?

Ps Funny thing is, although she can't follow TV dramas, she'll watch Traitors for two hours which I would have thought difficult to follow...leastways it is for me. Maybe she just likes Claudia's wardrobe 🤠

 

[maggie6445]

Thanks for the support to everyone. In particular the practical tips on managing hygiene. Come summer I'll just take her into the garden and hose her down! Kidding😊But maybe a hot tub? Or a massage shower might encourage use?

Ps Funny thing is, although she can't follow TV dramas, she'll watch Traitors for two hours which I would have thought difficult to follow...leastways it is for me. Maybe she just likes Claudia's wardrobe 🤠

Hi, I suppose it depends why she doesn't want to wash. My OH no longer likes water on his head or , I guess, the sensation of the shower water on the body. He'll hold a sponge under and use it on himself but quite a lot of water drains before it gets to him 😂

 

[Harky]

@John Mcfarlan I have some similar problems with my wife although symptoms differ widely from person to person. Haven't got an official diagnosis as the scan didn't show anything significant and the memory test eventually was OK according to the person checking her although I wasn't happy with the memory test. I didn't take it any further as I didn't want her to go through the stress again and anyway, I thought as there's no actual cure, does it really matter. Our doctor diagnosed her as he could see the symptoms (he had a family member with it) and it let us get some of the benefits.
Have the same problems washing etc. so have vastly reduced it. As to feeding, for ease I cut up everything and give her a spoon, much easier for her.
She really can't communicate and just rants on about anything and everything.. I deal with it by appearing very interested and joining in the conversation, it appears to work as you get into HER WORLD and she appears very relaxed. Think the main thing is to get into her world as that's her reality. She also hallucinates quite badly as well.
Fortunately for me, she doesn't have mood swings and is still the great natured person she always was but who knows, that could be one of the next stages.
Other problems are multilayering but I've managed to overcome that along with childproof locks and kitchen cupboards with anything important in them like medicine etc.

 

[John Mcfarlan]

@John Mcfarlan I have some similar problems with my wife although symptoms differ widely from person to person. Haven't got an official diagnosis as the scan didn't show anything significant and the memory test eventually was OK according to the person checking her although I wasn't happy with the memory test. I didn't take it any further as I didn't want her to go through the stress again and anyway, I thought as there's no actual cure, does it really matter. Our doctor diagnosed her as he could see the symptoms (he had a family member with it) and it let us get some of the benefits.
Have the same problems washing etc. so have vastly reduced it. As to feeding, for ease I cut up everything and give her a spoon, much easier for her.
She really can't communicate and just rants on about anything and everything.. I deal with it by appearing very interested and joining in the conversation, it appears to work as you get into HER WORLD and she appears very relaxed. Think the main thing is to get into her world as that's her reality. She also hallucinates quite badly as well.
Fortunately for me, she doesn't have mood swings and is still the great natured person she always was but who knows, that could be one of the next stages.
Other problems are multilayering but I've managed to overcome that along with childproof locks and kitchen cupboards with anything important in them like medicine etc.

 

[John Mcfarlan]

That's helpful...how you deal with it as I often feel I just withdraw from further interaction.

 

[Harky]

@John Mcfarlan , probably just the mind set. I know it has difficult times but I treat it as the new normal and get on with it knowing she'd do the same for me and more.
Don't be afraid to post for more information, we've all had difficult times and different ways of dealing with it. As I said, I've managed to overcome multilayering etc etc etc.
The only thing that keeps me sane (as we were both very active) is my laptop with puzzles etc.

 

[maggie6445]

That's helpful...how you deal with it as I often feel I just withdraw from further interaction.

I agree with @Harky , it's the mindset that helps me cope. I learnt acceptance, look for the humour, it's there and the knowledge he would do it for me if things were reversed. X