Begging to GO HOME.

[Padraig]

Ann, you make a good point. Some people like to be looked after whilst others are natural providers/protectors. The latter take control and would be at a total loss should they be struck with Dementia. In my case it was fortunate that I was a natural 'guard dog' when it came to protecting my wife. Just as well the rolls were not reversed. If I were to suffer with Dementia, I think I'd like to run away and lose myself in a woodland.

One lesson I learned early on was, when a new change in my wife's Dementia appeared, it was sudden and unexpected. For a while the change would vanish, till the it returned in fits and starts, then it became permanent. Such changes were loss of speech and spacial awareness. With reference to the latter it manifested with sudden falls. She would hold my hand while we were out walking. The first indication was when she would lean for support. The first time she slid to the ground was a warning not to stop our walks.

Sadly I learned too late it was futile to tell her to stay indoors while I took a short outside. It had been raining. Suddenly I heard a cry, she had followed me, fallen and broke her arm. From then on there was a rapid deterioration in her condition.

 

[Rageddy Anne]

I think we're nearly there, Padraig, so thanks for your warning. I'd been wondering why he's been so keen to hold my hand; thought it was to avoid losing sight of me in a crowd, but yes, it could be that he feels wobbly. He certainly drags his feet more and more, which I thought showed a need to stay in contact with the ground. Perhaps he's losing the ability to understand what's beneath his feet.

 

[Padraig]

The best analogy I concluded, when it came to loss of spacial awareness in my wife, was that of a child learning to walk, only in reverse. Distances, heights and sizes are difficult to judge and like a child result in falls. A small puddle in the road may appear larger due to loss of spacial awareness.

This was just my take on the subject. Like most things in my life I learned to manage on my own. Though I'm sure my wife no longer me as her husband, that man was much younger.
The main point was she sensed I was there to protect and provide for her. One can communicate on so many ways. When one is angry, upset or stressed the loved one is aware. Dogs are good communicators. A smell, sound, taste, touch or sight can stir warm early memories. True love penetrates boundaries its in the air.

Don't know if this is of use, just 'My Way' as told in my story.

 

[Rageddy Anne]

So true about dogs.a golden retriever that visits us seems to take responsibility for my husband, stays close to him all the time, and he loves to chat to her.

 

[Tin]

Ann, you make a good point. Some people like to be looked after whilst others are natural providers/protectors. The latter take control and would be at a total loss should they be struck with Dementia. In my case it was fortunate that I was a natural 'guard dog' when it came to protecting my wife. Just as well the rolls were not reversed. If I were to suffer with Dementia, I think I'd like to run away and lose myself in a woodland.

One lesson I learned early on was, when a new change in my wife's Dementia appeared, it was sudden and unexpected. For a while the change would vanish, till the it returned in fits and starts, then it became permanent. Such changes were loss of speech and spacial awareness. With reference to the latter it manifested with sudden falls. She would hold my hand while we were out walking. The first indication was when she would lean for support. The first time she slid to the ground was a warning not to stop our walks.

Sadly I learned too late it was futile to tell her to stay indoors while I took a short outside. It had been raining. Suddenly I heard a cry, she had followed me, fallen and broke her arm. From then on there was a rapid deterioration in her condition.

Sorry Padraig, I can't highlight the bit that interests me. Its the first part of your second paragraph. I was going to post a question but no need as you have answered it. I am finding this more and more with mum, at moment she is taking a lot of cat naps during the day, started suddenly a couple of days ago and it is not affecting her nigh time sleep. I suspect this will disappear for a while but return as a permanent thing very soon. The leaning to one side has been on and off, but again fully expect this to return. Your description just so much more understandable and to the point.

 

[Padraig]

Thank you I'm pleased to be of help. There are times I feel of little help to others as my approach to every day affairs differs other people.
From the start of life I learned not to place trust in anyone. That is not surprising in view of the fact I was abandoned at age two. At sixteen I was released into the outside world where I made my way alone. Too scared to make friends for fear of showing my ignorance I was of everyday life. A lack of education and being emotionally barren left me a social misfit and little option but to discover the wonders of freedom.
I've never accept advice without question nor give and chose to live life my way. Its proved to be a very exciting life. Sorry I don't accept 'impossible' till I try for myself. The Psychologist involved with my wife's Alzheimer's visited me and asked me to sign a book. He described my approach to that of a surgeon when it came to looking after my wife, 'I did not allow emotions to become involved'. I guess my approach was the same as it still is to this day, life's a long learning process.

I don't go along with the view that those from a poor background and lack of education have no chance in life. The experts in many fields work and think with-in their boxes, those that think outside of the box gain a wider experience of life.

In the final weeks of my wife's life she slept more often, even when I still took her shopping for the groceries. The final photo of us is at the supermarket as I pushed her about in the wheelchair, just day before she passed away. My philosophy was to maintain life as normal as possible, and not to be cooped up at home.

 

[Catherine.]

My dad often asks to go home when he is having a bad night, during other times he can't understand how this place he is living in has exactly the same furniture etc as he has in his house!! Amazing

 

[Rageddy Anne]

The need to be taken home has got worse and worse over the last week or more, and is urgent to the point of frantic! Walking round the garden worked fairly well when the weather was mild, but is not so practical now.

Last night we were watching the rugby, and my husband was worrying about how he was going to get home after he'd looked after all the players, and said he needed to be on standby to play as a substitute if he was needed, and was worried that he wouldn't know where to go in the crowd after the game. I told him I would drive him home, which helped a bit, but moments later it all started again. It went on for ages, although ?Strictly calmed him a bit.

This morning it's all started again..... Perhaps he'll feel less stressed after he's showered and dressed.

IF ONLY THERE WAS A TABLET I COULD GIVE HIM, TO CALM HIS FEARS AND WORRIES.

 

[Ann Mac]

The need to be taken home has got worse and worse over the last week or more, and is urgent to the point of frantic! Walking round the garden worked fairly well when the weather was mild, but is not so practical now.

Last night we were watching the rugby, and my husband was worrying about how he was going to get home after he'd looked after all the players, and said he needed to be on standby to play as a substitute if he was needed, and was worried that he wouldn't know where to go in the crowd after the game. I told him I would drive him home, which helped a bit, but moments later it all started again. It went on for ages, although ?Strictly calmed him a bit.

This morning it's all started again..... Perhaps he'll feel less stressed after he's showered and dressed.

IF ONLY THERE WAS A TABLET I COULD GIVE HIM, TO CALM HIS FEARS AND WORRIES.

I too wish for a 'magic' tablet, Anne - yesterday, even whilst saying repeatedly that she knew her Mother had passed away, Mil asked and asked and asked to phone her Mum. I got to the stage where I could neither answer nor even attempt to reassure her, just ran out of words and the mental stamina to say anthing xxxxx

 

[Rageddy Anne]

Did MIL forget the urgent phone call, Ann? I find sometimes that the bedtime routine breaks the pattern.

Showered, shaved, dressed, all treasures deposited in the right pockets, and now having breakfast. I'm shattered after it all began at four o'clock, but he's so fit that he'll be looking for the day's entertainment soon! Life is a Cabaret old chum! But please, let it be entertainment he's looking for, and not the old Going Home theme.

An understanding friend is popping in later( her husband is in his second Care Home, having been too much for the first, and couldn't remain in Assesssment indefinitely.) Between us, maybe we can have a conversation. He'll probably be wonderful.

 

[Ann Mac]

Did MIL forget the urgent phone call, Ann? I find sometimes that the bedtime routine breaks the pattern.

Showered, shaved, dressed, all treasures deposited in the right pockets, and now having breakfast. I'm shattered after it all began at four o'clock, but he's so fit that he'll be looking for the day's entertainment soon! Life is a Cabaret old chum! But please, let it be entertainment he's looking for, and not the old Going Home theme.

An understanding friend is popping in later( her husband is in his second Care Home, having been too much for the first, and couldn't remain in Assesssment indefinitely.) Between us, maybe we can have a conversation. He'll probably be wonderful.

Phone call forgotten - so far - this morning. Instead she is asking and searching for the 'black and white dog', asking me what I've done with it, whats happened to it? Neither of the 2 dogs that OH and I have had are black and white, and as she is insisting that this dog was here 'just a few minutes ago' I can't get away with claiming that this ficticious dog passed away years ago - or that he's even gone out for a walk as she is also sure that he can't be outside because of his bad leg. She has no idea why I'm lying to her about where he is, or why I'm so reluctant to call him so she can see that he is all right

Like you, I'm expecting Mil to have a spell of 'wonderful' a bit later on as she has an appointment with the district nurse, to check a nasty cut she managed to get on her leg last week. We didn't see it happen, and within moments she had given us 2 different versions of what she had done. She told the DN on Thursday that she had fallen out of bed - definitely not true - this morning, she is adamant that she did it when she was in Ireland last week. Be interesting to see what tale the DN gets this time

Hope your DH is free from the anxiety and the desire for home for today for you - sounds like you could do with a rest from it, hun xxxxx

 

[Rageddy Anne]

...and now, something new...

"Going home" has continued, but the time of day that it starts varies a lot. A few times it hasn't happened at all, and instead we've had other strange delusions. They are a fierce and urgent conviction that he is responsible for getting some task done, and that I'm hindering him by not co operating. "All those other people" have been here to discuss things, but they're very disorganised and muddled, and my husband has the job of organising everything, if only I would help him instead of making things impossible.

There's often a definite link between things seen on television and the tasks he thinks he's responsible for, so much so that I now have to carefully monitor what we watch. Jeremy Kyle was banished long ago, because seeing people shouting at each other resulted in similar uninhibited outbursts here. Watching the News is perilous, resulting in fear of violent attacks here in our peaceful village, a need to save all those people caught up in some disaster, ( I was letting him down by refusing to rally the neighbours to open their homes to the needy refugees), and dreadful fears about our financial situation.

The GP has agreed on a regime of one low dose Respiradone on alternate days. It's not a magic bullet, the delusions arent diminished, and now we're getting some upsetting double incontinence issues. I'm telling myself it may be a tummy bug....

 

[Grannie G]

When managing these behaviours is your 24/7 responsibility , it`s such a strain Anne. It takes me back and I really wouldn`t want to be there again.

 

[Ann Mac]

The GP has agreed on a regime of one low dose Respiradone on alternate days. It's not a magic bullet, the delusions arent diminished, and now we're getting some upsetting double incontinence issues. I'm telling myself it may be a tummy bug....

Talking to the Nurse at the incontinence clinic, Anne, she felt that respiradone is often responsible for incontince in dementia patients - or at the very least makes it much worse! Mil has been taken off respiradone since her diagnosis has been changed, and there has been a massive lessening of day time bowel incontinence (though the wetness at night continues, thankfully at the moment contained by pull ups - IF she keeps them on!) - is it worth asking if there is an alternative for your OH? Especially as it doesn't seem to be easing the delusions for him? xxxxx

 

[Rageddy Anne]

Thankyou Ann, that's kind. Thankfully, and with my fingers crossed, the various incontinence episodes seem to have stopped. But the agitation and anxiety have continued, possibly even worse. We're down to approx three questions a minute, mostly the same one...." When can we go home?"

This evening I asked him what home was like, and he came up with quite a detailed description that could have been the house he lived in as a child. But describing it calmed him a little.

I've just been invited to pop in for a coffee any time I'm passing, as Anne would love to see me! As he said,Anne sits at home a lot with little to do!

And now for the road to bed, via the planning to go home route! He's waiting for his transport apparently.

 

[usedup]

Where is home?

The desire to "Go Home" is a big worry for me. I am grateful for any day when it does not come up. My best guess is that "home" was a place of emotional security, as suggested in some of these posts. But "Home" is also "anywhere but here" because this is the place where dementia got worse. (Retirement village to which we moved 1 year + ago.) The strategy I am trying right now is to provide present security by exhibiting loving behaviour. (Not easy for an unemotional man with all the hang-ups of a public school education, I am not naturally huggable.)

 

[canary]

So difficult, usedup. FWIW, I think you are using the right stratagy. Sometimes getting them to talk about "home" helps too.
If it is any comfort I think that even if you moved she would still be asking to go home, because "here" is where the dementia is - where ever you are.

 

[Rageddy Anne]

" Home" is becoming such an illusory matter that I had a quick look at a care home last week, with respite in mind. Going home, and broken nights are getting to me, and I can see that I need a rest.
The first room I was shown was so dark and gloomy that I wouldn't shut a dog in there. The second overlooked the car park, all asphalt and concrete, soul destroying. Very kind staff, but NO WAY..
I was hoping to find somewhere a little like a hotel, with a few days respite in mind, possibly longer later on if needed. DO SUCH PLACES EXIST?

Meanwhile thank heavens for a kind, imaginative young man who keeps my husband company several hours a week, taking him out, or staying in with him while I go out. I would go under without him, but worry that our needs will make us too demanding.

 

[Grannie G]

Good homes do exist Anne, they need searching for. Sadly because of our caring responsibilities most of us neither have the time or the energy to search every home in our area in order to find a good one.

My CPN helped me. He drove me round all the homes in the 2 hours my husband was with his agency carer. Is there anyone you know who can help you by recommendation ? Do you attend a carers` support group? Have you searched on line and looked at CQC reports?

It`s a nightmare of a task.

 

[Ellaroo]

My mum has lived with me for 6 yrs and have regular periods of sundowning , wanting to walk home. I try making excuses and finally she says its been nice knowing you but ive got to go home. She walks same route to bottom of road , waits for 5 mins and walks back, saying am too tired is it ok if I go tomorrow. It does settle her, perhaps it tires her out and she has made decision herself . Shes nearly 90 so has slowed down , thank goodness .