'Cognitive Impairment' and onwards

[AbbyGee]

My OH was diagnosed with CI last year after I'd finally managed to get him to speak to our GP. This CI diagnosis seems rather tame and his cognition is slipping into something darker. He's continually confused, scared, forgetful, distant et al and I find myself getting snappier when I have to answer the same question several times in the space of a few minutes. (BAD WIFE!)
I keep a calendar to let him know what's happening and when, I've stuck labels up in the kitchen to show what's in the cupboards, bought a rather nice clock that says what day / date / year it is, make sure he's taking enough fluids during the days, don't do the womanly change of mind thing at a moment's notice, ensure his meds are followed, try and maintain some sort of regime or regularity, do the decent diet with lots of fresh and no junk but right now ... pah..... I'm so TIRED I just want to scream. It's like having a truculent 4 year old following me around.
OK - I *know* it's not him but the fault of the nasty butterfly that flits off with his thoughts but how the heck do I remain calm? This is really creasing me up and I'm at a total loss.
Sorry, I just needed to unload.

 

[margherita]

Hi @AbbyGee ,
I am in the same situation as yours.
My husband is in the early stages of Alzheimer's, even though I do not know how early they actually are.
His memory is very poor. He doesn't understand what I tell him eight out of ten times, so I have to repeat once.. twice or more.
We have been living in the country since he retired, we are isolated, the two of us most of the time. He is also clinging, wherever I go, he wants to go with me.
He can still wash and dress himself, he can drive locally ( only God knows how he can).
He is often confused over very simple tasks and seems not to be able to process elementary information.
I can't contradict him because he gets angry, besides being a waste of time and energy.
I am snappy , just like you.
I can't remember I have deal with an eighty year old whose brain is that of a four year old child.
I know it is not his fault. But it is neither mine.
I'm sorry I am not helpful, I can only tell you you are not alone when you enter here.

 

[PalSal]

Hi @AbbyGee ,
I am in the same situation as yours.
My husband is in the early stages of Alzheimer's, even though I do not know how early they actually are.
His memory is very poor. He doesn't understand what I tell him eight out of ten times, so I have to repeat once.. twice or more.
We have been living in the country since he retired, we are isolated, the two of us most of the time. He is also clinging, wherever I go, he wants to go with me.
He can still wash and dress himself, he can drive locally ( only God knows how he can).
He is often confused over very simple tasks and seems not to be able to process elementary information.
I can't contradict him because he gets angry, besides being a waste of time and energy.
I am snappy , just like you.
I can't remember I have deal with an eighty year old whose brain is that of a four year old child.
I know it is not his fault. But it is neither mine.
I'm sorry I am not helpful, I can only tell you you are not alone when you enter here.

Hi girls, at the moment I am using this prayer.
God be in my head
and in my understanding;
God be in my eyes
and in my looking;
God be in my mouth
and in my speaking;
God be in my heart
and in my thinking;
God be at my end
and in my departing
Trying to stay focused on the God be in my mouth...part...please God give me kind words.
Thanks for sharing honestly your experience....we are not alone.

 

[Grannie G]

Hello @AbbyGee. Welcome to Talking Point. I`m glad you`ve found us and hope the support here will help you feel less isolated in your caring.

Unload as often as you like if it helps. I found the early years the hardest, most difficult and most upsetting and offloading on Talking Point helped me more than I can say.

Something else which helped me was the following;

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

I hope it helps you.

Hi girls, at the moment I am using this prayer.
God be in my head
and in my understanding;
God be in my eyes
and in my looking;
God be in my mouth
and in my speaking;
God be in my heart
and in my thinking;
God be at my end
and in my departing
Trying to stay focused on the God be in my mouth...part...please God give me kind words.
.

I love this @PalSal. We could all apply this to ourselves whatever we see our G-d to be.

 

[AbbyGee]

Hi @AbbyGee ,
I am in the same situation as yours.

Thank you margherita.
I find it so frustrating knowing what a bright spark he was 'back in the day'. This is certainly not what I imagined our sunset years would be like but hey-ho .... onwards and upwards.

 

[AbbyGee]

Hello @AbbyGee. Welcome to Talking Point. I`m glad you`ve found us and hope the support here will help you feel less isolated in your caring.

I do miss adult conversation and simply chatting about the ridiculous, the mundane, the sometimes contentious. I'm sure this forum will be a regular stopping place for me.

edit: I've just looked at the link you kindly provided. WOW! I didn't realise just how many of the do's and don'ts I've already adopted. Maybe I'm coping better than I thought.

 

[karaokePete]

Hello @AbbyGee, welcome to the forum.

You have been advised of most that I wanted to say already. One thing I would add is that you should keep pressure on for follow up testing as MCI develops into dementia in some 50% of cases and if you notice a continued decline this may be happening - it happened to my wife within a year. When my wife was diagnosed with Alzheimer's she was prescribed 2 meds that have slowed(not stopped) the rate of decline. A diagnosis can be important.

You may find some value in the following links

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

 

[Grannie G]

I do miss adult conversation and simply chatting about the ridiculous, the mundane, the sometimes contentious. I'm sure this forum will be a regular stopping place for me.

I hope so.

It was the sharing I missed the most with my husband. Not necessarily sharing of responsibility, I was OK with that. It was the sharing of interests, titbits from the news and discussions about events which held both our interests.

So many times even now, I`ve seen or heard something and wished I could share it with my husband, knowing only he would have been able to appreciate how I feel.

 

[Manc70]

My OH was diagnosed with CI last year after I'd finally managed to get him to speak to our GP. This CI diagnosis seems rather tame and his cognition is slipping into something darker. He's continually confused, scared, forgetful, distant et al and I find myself getting snappier when I have to answer the same question several times in the space of a few minutes. (BAD WIFE!)
I keep a calendar to let him know what's happening and when, I've stuck labels up in the kitchen to show what's in the cupboards, bought a rather nice clock that says what day / date / year it is, make sure he's taking enough fluids during the days, don't do the womanly change of mind thing at a moment's notice, ensure his meds are followed, try and maintain some sort of regime or regularity, do the decent diet with lots of fresh and no junk but right now ... pah..... I'm so TIRED I just want to scream. It's like having a truculent 4 year old following me around.
OK - I *know* it's not him but the fault of the nasty butterfly that flits off with his thoughts but how the heck do I remain calm? This is really creasing me up and I'm at a total loss.
Sorry, I just needed to unload.

Hello @AbbyGee, welcome to TP, this such a good place when you want to unload, makes life a bit more bearable when you realise there are others going through the same or just understand what it is like for you.
Some of what you say is so familiar to what it was like for me a couple of years ago. The calendar, him staring at it and still asking me “so what does today bring?” what seemed like every five minutes. Making sure he drank enough in case it was just confusion through dehydration. Then realising his spelling, his excellent sense of direction, telling the time, reading and just working things out, was getting harder for him, my intelligent strong husband. Not being snappy is so hard and of course you are not a bad wife, just human and in very different, difficult circumstances. There are lots of things I have now let go that I would normally have had something to say about. I think tiredness and eventually realising it got me nowhere except very frustrated and upset. Of course it does still happen and I definitely don’t always stay calm and feel it’s my right to have my say, as much as you tell yourself “it’s not really him”.
Wishing you all the best S x