If you partner has dementia - how many of us want to walk away?

[Mudgee Joy]

I listened to a long lecture on health issues today - a podcast on our ABC (like BBC) - it covered all types of health conditions and trends - one small point the statisticians have found is that Dementia is less in people with higher education - so in advanced countries, as education has extended in years, there is also a reduction in the percentage of people with D . The suggestion was- it was because we exercise our brain more when we have more education !

 

[Grahamstown]

So many phrases above ring a bell for me. Going for a walk without him because he would moan about all the other people and having to stand in line for a small queue to get into the garden, let alone for lunch, getting tired half way and having to chivy him along to the end; keeping things clean and tidy; keep reversing stuff in the house which has been switched off and shouldn’t be (e.g.freezer) etc etc.

 

[Grahamstown]

I listened to a long lecture on health issues today - a podcast on our ABC (like BBC) - it covered all types of health conditions and trends - one small point the statisticians have found is that Dementia is less in people with higher education - so in advanced countries, as education has extended in years, there is also a reduction in the percentage of people with D . The suggestion was- it was because we exercise our brain more when we have more education !

My husband has been diagnosed with mild AD and the consultant said that it was his higher level of brain function (he is a research scientist) that has kept it at bay for so long, and when I look back I can see that there were indications years ago that I dismissed as one of those things. He has never got to grips with his mobile phone, will not switch it on or if he does it’s on silent, and this has been a source of friction between us for a long time. Now he needs that resource to help him and he still won’t use it even though it is all set up and synchronised with mine. It’s exasperating in the extreme because it actually causes difficulty at times. He has always been health conscious and is in good physical shape, eaten lots of the correct fruits etc. and taken vitamin D for years, which is essential, and still he has succumbed. I guess the key phrase ‘less likely’.

 

[Rosie4u]

I've just read this thread. I really don't know how we do it - no thanks no understanding and not a lot of help. I got a list of all the wonderful things available for caters to do in the post today - it's like showing a child a sweetshop and saying you can't have any!!! I can't leave my OH by himself for longer than 5 mins.
I could never leave him - I don't really want time off to do things without him but I know I have to have a break or I can't cope and it upsets him when we have a carer in so double guilt!!!
I try not to tell his son too much as he shouldn't have to see his dad like this.
I'm dreading the day when I can't manage so for now enjoy the moments we have

 

[Grahamstown]

@Rosie4u having to be with him 24/7 is grim. At the moment I can leave him up to after lunch and then I cannot leave him alone. I am taking my chances while I can because I may lose that eventually too and will have to get some help. At times our home feels like a prison and I have to fight against that feeling. Take care of yourself!

 

[PJ]

Thanks @PJ. Yes, we're good again as Mrs KP doesn't remember anything and my bruised feelings recover quickly! We have children and grandchildren visiting at the moment and that helps as a distraction.

Oh bless you it must be so difficult at times. I hope your family bring lots of smiles & laughs to you both. Keep up the brilliant work you do

 

[john1939]

Hey Ho, another day another scenario. This morning I went into my wife's bedroom to rouse her for breakfast. She pulled the bedclothes over her head and announced that she wanted to die.
The best way of dealing with this, I have found is to humourise it.
Right , dear what's it to be today ? Yesterday it was rat poison, the day before was bridge jumping, so what today then?? she then announced she was going to starve herself.. Ok, I said and left the room. Ten minutes later she arrived in the kitchen demanding her breakfast having forgotten all the previous nonsense.
Before I go I will relate a strange incident.
I decided to take my wife into town for a shopping trip. We went in by bus. During the trip my wife struck up a conversation with another lady sitting nearby.
I overheard the conversation in which my wife was telling the lady about the knife she had bought in order to kill me when I was asleep.
The poor woman jumped up and left the bus at the next stop obviously terrified. When I questioned my wife about the conversation she said it was just a joke.
PS I have put a lock on my bedroom door!.

 

[Malalie]

OH, having to have to spend a night at MILs house due to a 'melt down' day had to hide the kitchen knives in the garage overnight. She was a tiny little 5' 1" lady and he's a fairly tough military chap so I sympathise john......

 

[maryjoan]

I think so many of us have that thing called a conscience - and that is what is stopping us walking away from the terrible situation we find ourselves in.

I increasingly realise that my OH would soon settle down if I wasn't here.

As long as his daily needs were attended to, he would not care - because this vile disease has made him stop caring.

In fact, sometimes he speaks to me in that detached way - as if I was a servant. When I say 'speaks' I mean just that, as there is no conversation - he will request I get something or do something for him.

Last Night's little 'happening' - he has lost his keys, and spend an age turning the place upside down looking for them.
These are the 'keys' that he has carried on his belt loop ( as some men do) every day for the last 50 years. But they are keys he no longer uses for anything, but they are important. So we continue the search today for the keys he can't find, that my head tells me 'So what? they are useless keys' but they must be found....

There is something good in every day - and his daughter took us out to Lyme Regis yesterday ( she is down from the Midlands) I had 20 mins or so sat in lovely sunshine on the Cobb talking to a couple who where thinking of retiring to this wonderful part of the country we live in, and were 'trying out' different towns to see which they liked... it was a super few minutes and I wish them luck!

 

[maryjoan]

Hey Ho, another day another scenario. This morning I went into my wife's bedroom to rouse her for breakfast. She pulled the bedclothes over her head and announced that she wanted to die.
The best way of dealing with this, I have found is to humourise it.
Right , dear what's it to be today ? Yesterday it was rat poison, the day before was bridge jumping, so what today then?? she then announced she was going to starve herself.. Ok, I said and left the room. Ten minutes later she arrived in the kitchen demanding her breakfast having forgotten all the previous nonsense.
Before I go I will relate a strange incident.
I decided to take my wife into town for a shopping trip. We went in by bus. During the trip my wife struck up a conversation with another lady sitting nearby.
I overheard the conversation in which my wife was telling the lady about the knife she had bought in order to kill me when I was asleep.
The poor woman jumped up and left the bus at the next stop obviously terrified. When I questioned my wife about the conversation she said it was just a joke.
PS I have put a lock on my bedroom door!.

If caring for someone with dementia WAS a job - I am sure the job description would require copious amounts of intelligence to deal with all the 'official stuff' but moreso, an abundance of humour! In fact, I will start a new thread along these lines - thank you John !

 

[Mudgee Joy]

Now that I have stopped being sad each day - I often think of the funny side.
Yesterday :
“We took a short bike ride
On our local cycle ways,
I was in my cycle gear
He - in his favourite pjs “

He made he laugh too when he said casually “so what time do you make it?”
He held up his watch for me to see and it was upside down!

 

[john1939]

Hello, today is my wife's day centre day.5 hours of sort of respite (for me, that is ). I spend this time cleaning out her room and unearthing soiled underwear which she hides under the bed mattress.
36 pairs of scissors were found in a drawer. She has a fascination for sharp and bladed objects.
She buys these when we visit shopping malls. I could try and stop her, but that would result in a terrific confrontation, so I find it easier to say nothing and then steal them when the opportunity presents itself.
While I moan about the weird behaviour the doctor said that the drugs she is taking is managing the worst symptoms. Goodness knows what things would be like without them. Probably sectioned.

 

[Agzy]

I am exactly in your place, but we have only been together seven and a half years. Your list is my list - lack of love, conversation, boredom, stress - oh, yes, I emphasise completely with you. I am able to work from home, and it does distract me a little bit, but when I am concentrating on working and he wanders in with a completely aimless (to me) meaningless question that shatters my concentration - then I could scream.

But there is no point - there is no one listening - I keep thinking I am getting my head around the situation - but it is so unnatural isn't it?? The Doppleganger Effect.

Good Luck to you...... and me..... and us all........

And sadly it will continue because the vast majority of us will stay the course, much to the economic relief of Government, even if it bankrupts us of all that has value both emotional and financial, we still will do it x.

 

[Agzy]

Wouldn't it be refreshing if there was a government (UK, Australia, anywhere) that had the guts and ethics to challenge how all this stuff currently works? Same lack of moral fibre over many years, same lack of economic commitment to address the isues, same lack of knowledge and understanding what the issues are in the first place, same old excuses for not dealing with the problems, same old heads in the sand about the increasing number of elderly who will require assistance, same old..................Same old..........

Absolutely but if not a vote winner politicians hearts harden against including it in a manifesto.

 

[Gnasher]

I read some of these threads and think that is me! Yes it is the trivial things that upset: washing the spoon to give the dog pilchards under the cold tap and refusing to put it in the dishwasher, changing his clothes daily but everything goes back in the wardrobe and I am not allowed to wash any, shuffling and following me around, shouting "where are you" when I am just in another room in our bungalow,shoplifting and denying it - oh the list goes on. The worse is the constant phones calls to DVLA, hospital, etc about why he can't drive and I am not helping him. Day in day out. Every hour of the day.
I re entry did a memory matters course for Carers and they told us "you are in control". Rubbish dementia controls our lives.

 

[carolynp]

I read some of these threads and think that is me! Yes it is the trivial things that upset: washing the spoon to give the dog pilchards under the cold tap and refusing to put it in the dishwasher, changing his clothes daily but everything goes back in the wardrobe and I am not allowed to wash any, shuffling and following me around, shouting "where are you" when I am just in another room in our bungalow,shoplifting and denying it - oh the list goes on. The worse is the constant phones calls to DVLA, hospital, etc about why he can't drive and I am not helping him. Day in day out. Every hour of the day.
I re entry did a memory matters course for Carers and they told us "you are in control". Rubbish dementia controls our lives.

Yes Gnasher all so true. When I had toddlers I used to complain about the endless demands: “I’d just like to be able to go to the lavatory by myself!” Famous last words. Now that’s happening again. At least, I suppose, my OH can talk. “Where are you? Are you all right in there?” And I guess his persistent knocking on the bathroom door is better than a toddler’s screaming insistence on coming right in. But not a lot better, I have to say.

 

[karaokePete]

@Rosie4u having to be with him 24/7 is grim. At the moment I can leave him up to after lunch and then I cannot leave him alone. I am taking my chances while I can because I may lose that eventually too and will have to get some help. At times our home feels like a prison and I have to fight against that feeling. Take care of yourself!

Yes, take every chance you can, while you can. Until now I have been taking myself out for long solo walks every day but I'm now sometimes getting phone calls when miles from home that leave me wondering if my wife is OK. This is partly due to the fact that she can't use her phone any more so I'm left to panic about what may be happening while I almost race home. I can feel my world shrinking. A thing that makes me look to the heavens and sigh is how she is always shocked to hear there's a problem as she never remembers what she has done and has zero empathy for anyone else's feelings anyway. Still, there's always a tomorrow and I'll always let myself believe that my solo walks will continue.

 

[karaokePete]

Yes Gnasher all so true. When I had toddlers I used to complain about the endless demands: “I’d just like to be able to go to the lavatory by myself!” Famous last words. Now that’s happening again. At least, I suppose, my OH can talk. “Where are you? Are you all right in there?” And I guess his persistent knocking on the bathroom door is better than a toddler’s screaming insistence on coming right in. But not a lot better, I have to say.

I know I shouldn't, but I had to have a laugh at that.
Due to the way my wife behaves I think that they should add something to the list of symptoms of dementia:-
................................................... 'They become a limpet' ............................................................

It's just as well that I'm head over heels about my wife(most of the time!!) and understand the reason for the behaviour - otherwise it would be hell!

 

[Grahamstown]

Oh dear the phone issue. I think that his seeming inability to use his mobile phone either for phone calls or messages from way back is a sign that there was a glitch in his brain somewhere because it was almost pathological. Now it is a real handicap and it’s only function is for me to trace it when he is out because I know how to do that. He has always looked at his emails and it drives me mad that he will not switch it on to get a message or call from me. I went to my meetings yesterday and today in the mornings and I send him a message and leave a voicemail but know he won’t see it and he doesn’t. It would be so useful if he would. He wanted to go to the pub as usual a bit earlier than normal. He had remembered that he could have a drink of wine tonight but I said that he may prefer to be at home and watch Pointless. Such a good suggestion by someone on the forum and he agreed and really enjoyed it. I don’t know whether he has sneaked some more wine but the relief of not having a lengthy tussle is enough and I am not worrying. He has started taking his one prescribed pill in the morning instead of the evening after several years of routinely taking it at night so has got muddled about that. There seems to be a new task every day.

 

[Grahamstown]

I know I shouldn't, but I had to have a laugh at that.
Due to the way my wife behaves I think that they should add something to the list of symptoms of dementia:-
................................................... 'They become a limpet' ............................................................

It's just as well that I'm head over heels about my wife(most of the time!!) and understand the reason for the behaviour - otherwise it would be hell!

Yes that’s a timely reminder that this is my dearly beloved husband and I must try and remember that when I get stressed by what is his regressive behaviour.