All posts by It's My Time Now

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About It's My Time Now

I am a retired adult educator. My wife had a stroke in February 2014 and developed mixed dementia. I was her Care Partner until she passed in October 2025. This Blog has told the story of life as a Care Partner and now focuses on the aftermath of dementia.

Dementia: ‘You’re Doing A Great Job’

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I get a little tired of people telling me ‘I’m doing a great job’ as a Maureen’s Care Partner. The following post from the Alzheimers’ Reading Room points out that words are cheap:

‘It is not unusual for caregivers to tell me that as time goes on, and as Alzheimer’s worsens, one by one their family and friends fade away.

One issue that really frustrates me is the treatment of Alzheimer’s caregivers.

Most Alzheimer’s caregivers hear people tell them how wonderful they are for taking care of their loved one.

As a caregiver, I learned to appreciate these compliments. They help, they really do.

However, if you have a loved one, family member, or friend that is an Alzheimer’s caregiver and all you do is tell them what a great job they are doing — it is not enough.

Many Alzheimer’s caregivers are forgotten by family and friends.

This is a sad truth that is rarely discussed.

This is understandable — Alzheimer’s is scary and disconcerting. It is hard to accept, hard to understand, and hard to watch as it progresses.

It is not unusual for the friends and family to continue to call and give the caregiver the old “rah rah sis boom bah”,and then they get back to their own life.

The caregiver puts their life on hold — or worse they have no life — while caring for a person living with Alzheimer’s. Calling and letting the caregiver “vent” is helpful, very helpful, but it is not enough.

Like it or not, if you are a family member or friend of an Alzheimer’s caregiver and you are not helping them — you have abandoned them. I am sure this sounds harsh. But, it’s not even close to the harshness of your own behavior.
Caregivers need help. A few hours here and there to get away from it all is an important step in improving their lives. Some time to enjoy the world outside their home: time to re-attach with others.

Why am I so passionate and adamant about this?

Forty percent of Alzheimer’s caregivers end up suffering from depression — four out of ten. Do you want to see this happen to a loved one or friend?
Alzheimer’s is a sinister disease–it kills the brain of the person suffering from Alzheimer’s.

And, it will try to kill the brain of the Alzheimer’s caregiver.

I really don’t believe this problem is well understood.

Here are my immediate suggestions.

  • If you know an Alzheimer’s caregiver, find a way to organize the troops– family and friends — and get involved. Somebody has to take the initiative and if you are reading this article — take charge now.
  • If you know a family that is dealing with Alzheimer’s send them the link to this article and encourage them to organize up their own troops and do something.
  • Nothing works better than a small team of caregiverhelpers. The key words here are team and team work.

Here are some actions that will improve the life of the caregiver and help them avoid depression.

  • The Alzheimer’s caregiver needs to get away from it all. They need a respiteevery few days. This means someone must take over while they go do something they enjoy. You might find this difficult to believe, but when I get to go to the store, take my time, and look around at the surroundings — it is a treat. I bet you take this for granted.
  • Invite your Alzheimer’s caregiver and their loved one over for lunch or dinner. Most Alzheimer’s caregivers tell me that one of the biggest problems they face is socialization. If you don’t believe me — ask them. Both the caregiver and patient need to talk and interact with other human beings. Don’t you?
    Socializing really benefits the Alzheimer’s sufferer (see:A Wonderful Moment). What is not as apparent is how much it benefits theAlzheimer’s caregiver.
  • This one is tough to do but could very well keep the caregiver from becoming depressed. Many sufferers of Alzheimer’s get up in the middle of the night. This means the caregiver needs to get up with them. Sleep deprivation often leads to depression and it can cause erratic behavior. Imagine going night after night without sleeping well. If this is happening to someone you know, you need to help design a plan that allows them to get the sleep they need.
  • Do you know an Alzheimer’s caregiver? Ask them when was the last time they went to a movie? You might be surprised when you hear the answer (that is went to a movie thereafter, not watched a movie on television).You can solve this problem through team work: one person looks after the patient, and the other one takes the caregiver to the movie.This is a “get away from it all experience” that is really beneficial to the mental health of the Alzheimer’s caregiver’.

Bob’s suggestions are particularly relevant here as contact has dried up from some quarters and this is a great disappointment to Maureen.  It must be dreadful to hear that your own family are too busy to see you at a time when you need to see them more than ever.  It is also disappointing that their support to me as her Care Partner is equally lacking.  I have made noises but my pleas are leading to excuses rather than genuine reasons for inexplicable behaviour by Maureen’s nearest and dearest.

Dementia: Looking Back: Looking Ahead (Week 24)

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Carers Assessment Needed

Maureen’s presentation continues to become increasingly challenging. She is now very distressed if I am out of sight; often believing that she has been locked in the house and left alone.  On occasions she will forget where I am and leave the house in a bid to find me. She has been extremely tired in the last few days and spends a lot of her time sleeping on the sofa.  Tests results should be back today and reveal if an infection is making life even more challenging for her.

I had given up trying to persuade Maureen to move from the sofa to the bedroom at night.   After last night’s performance I doubt I will try to move her again. When she is sleeping on the sofa the Baby Monitor usually wakes me well after midnight and with luck I manage to encourage her to join me in the marital bed.  However when my deep sleep is interrupted I find it difficult to nod off again and exhaustion follows.

Maureen is really struggling to know how to pass time; she has no hobbies and restricts her activities to minor household duties.  She can no longer read and gets little enjoyment from watching T V.  On some days she will respond well to my performance as a DJ and spend a considerable amount of time singing along to her favourite music.

Despite the warmer weather it is not easy to persuade Maureen to take exercise.  She often complains that her leg hurts, she has no suitable clothing or is simply too tired to go out.

 A Carers Assessment is needed to take account of changes in Maureen’s presentation and Luton have helpfully summarised the key issues:

Dementia : Thank Goodness For Geoff Lynne

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Geoff Lynne’s ELO just lifted me after a difficult start to the evening.  Seeing them at Glastonbury helped me to remember some good times in my life at a time when I needed an escape from the difficulties here.

As I was finalising our Sunday evening meal Maureen decided to take exercise in the garden.  She failed to heed my warning that her shoes were in a dangerous state with the sole falling off.  I found her some safer shoes but she refused to change into them.  As I stepped back outside from checking how things were simmering I noticed that the back gate was open.

I hurried into the front drive and watched her from a distance as she ambled down the road.  She then disappeared into the garden of some neighbours who we hardly know.  As I peered through their gate I could see her moving things about in their garden.

I called on Kevin our next door neighbour to help entice her out of the garden.  He stuck to the plan and told her I was looking for her.  When she saw me she wanted to know why I was looking for her ‘as she wasn’t looking for me’.

Maureen played with one of her favourite meals spitting most of it out claiming it was undercooked or cold.  She encouraged me to keep it so she could show her son the kind of rubbish that is being served up here.  Unfortunately, his phone call from Durham came when she was fast asleep.

I had a chat with Jessica from the Home Treatment Team who said she is having a bad day.  As always she offered support in terms of sending someone out if things escalated.  ‘Lynnie’, as Rob my brother in law calls him, was all I needed.  Rob remembers backing him when he was part of the Idle Race as he has backed many more.

Sleeping Beauty is in the land of the nod again now: once again it was a shame she wasn’t able to have contact with a family member at a time when those opportunities are diminishing.

 

Dementia: The Red Arrows Save The Day

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I realised that any attempt to attend the Armed Services Weekend in Cleethorpes would be futile.  The resort was expected to be very busy with large crowds expected: the opposite of what you need when you have dementia.  Maureen had walked out in the morning looking for me rather than Dodgy Dave as she had forgotten I was next door talking to a neighbour.  Fortunately I hopped on my bike and found her a few streets away and eased her back home.

I managed to wake Maureen from one of her many dozes just as the Red Arrows were in town.  Our vantage point from the greens Cleethorpes Golf Course at the rear of our house gave us an excellent view of their performance:

I managed to catch a glimpse of other aircraft from our garden as Maureen stayed asleep on the sofa.  Once again the Lancaster didn’t make it due to ongoing repairs to fuel tanks so I didn’t get chance to hear the ‘tum tum’ of those four Merlin engines as My Rear Gunner dad used to tell me about.

During the evening Maureen became distressed as she thought she had been left alone and locked in the house.  As I returned downstairs following a shower I found her very upset as she tried to make sense of ‘where the others had gone’. 

My attempts to encourage a walk late evening failed.  Maureen spent half an hour trying to find comfortable socks and shoes then retired to the sofa.  I tried everything I could think of to help her without success and eventually went out for a walk by myself always keeping our house in view.

It’s not looking good this morning as I bring up Maureen’s cup of tea: she is too hot and all clothing is too tight.  I’m wondering if this is one of those issues that you just can’t fix as Susan Macaulay alluded to in a recent comment.

 

Telegraphing their lack of understanding

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George never gives up trying improve how those with dementia are treated

georgerook51's avatargeorge rook

So GPs have finally said there’s no point in a person knowing what’s wrong with them.

Oh, yeah, I know you’ve got cancer but it’s a type we can’t cure, you’ll die in three months, so I won’t tell you. Then you won’t worry, your family will live in happy ignorance, and it’ll be a much better way to end your life.

Absolutely reasonable. Just flicking a switch.

image

Click.

There. Goodbye. It’s over.

I know I’ll miss out on £50 for referring you for a full diagnosis. But it’ll save you loads of pointless visits to doctors, scans, chemo, counsellors, Macmillan nurses, our practice.

And we’ve got too much work now anyway.

No. Just go home as if nothing has happened.

Ignore your pain and discomfort.

Ignore your family, children, friends…just go on as usual.

And one day, well, you just won’t wake up.
….

Does this happen?

Of course…

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Dementia: Looking For Dodgy Dave

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I have just found Maureen on an early morning walk a few streets away.  I have a sneaky feeling she was trying to set up a photo opportunity with Dodgy Dave.  The Prime Minister is due in Cleethorpes shortly as part of the Armed Services week-end.

As Maureen’s long term memory is intact she remembers being close to Prince Charles when her came here and I think she wanted another scalp in the scrap book.

I don’t think she realises her time is running out with Dodgy Dave now Brexit has won the day.

 

Dementia: What A Clanger!

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I was rather tired yesterday after being woken at 2 am and not being able to get back to sleep.  This led me to try to catch up on sleep with an afternoon siesta.  Unfortunately I was woken an hour later by Maureen shouting: ‘this place is like a scrap yard’.  She was right – in every room and the garden I had left evidence of my half-finished endeavours.  I soon got my deserved reward with clothing and insults hurled in my direction.  The irony of all this is that I had been chatting to Chloe in the morning and she had reminded me how important it was not to add to Maureen’s levels of confusion: I would have got a University First in return for my efforts yesterday.

I have great respect for Chloe’s understanding of Maureen’s dementia.  She has had years of experience of working with clients who have the condition and  personalises her approach to Maureen’s care.   I have learned a lot about how to be an effective Care Partner by ‘Sitting next to Chloe’: yesterday I failed to heed her message and created confusion.

I hope I have got the message now and will consider whether my behaviour is likely to add to Maureen’s confusion.  Lying in bed with clothing hurled in your direction certainly gives you food for thought.   I’m not sure I dare mention this to Chloe or she might think there is little hope for her apprentice!

Dementia:Being Positive and Using Distraction

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 Maureen’s presentation is continuing to fluctuate and it is often difficult to know how to respond to the daily challenges.  Maureen was escorted back home twice by neighbours yesterday.  We laughed about their interventions and I offered to make Maureen a badge to indicate that she was a Big Girl now and safe to be out by herself.  I have also been advised to be positive and use distraction to relieve Maureen’s concerns about her poor memory.

I became very concerned yesterday about Maureen’s distress about not being able to remember where she was and who I am.  As Maureen became increasingly distressed  I sought advice from Isobel’s in the Home Treatment Team.  Her advice was helpful but it remains taxing when Maureen doesn’t know who I am and is ill at ease with my presence.

One matter I need to resolve as soon as possible is to create opportunities for the three people who are working with Maureen (Chloe Gail, and me) to get together on regular basis.  We need to discuss how things are going and keep our interventions with Maureen under review.   That is an issue that will not be helped by being positive and using distraction techniques.

One strategy that is working is highlighted today on my Good Music page: hope it continues to work in the coming week.

Dementia: It’s Good To Be Back Home

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Maureen is in hysterics after being brought back home by Pat this morning.  Our 85 year old neighbour caught her as she was out for her stroll; grabbed her by the arm and marched her back to me.  Pat isn’t supposed to go out on her own as she has dementia. Thankfully Maureen has seen the funny side of her adventure: it’s good to be safely back home in Cleethorpes after our day trip to Coventry  yesterday.

Dementia: Going Back Home

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We went back ‘home’ to Coventry for a day yesterday.  As we were both up early and the sun was shining we decided on a day out so that we could see my mother and brother.  When we arrived at mum’s Care Home she was having her weekly shampoo and set.  We didn’t have to wait long before she arrived in the visiting area but as it was close to her mid-day meal we agreed to pop back later to take her out for a short drive in the countryside.

John was being fed as we arrived at his Nursing Home.  He looked clean and tidy as he enjoyed being spoon fed his lunch.  Several of the other residents tried to interact with us in one way or another as we waited for him to finish his meal.  John didn’t give any indication that he knew who we were: rightly concentrating on one of the ‘lovely ladies’, as he used to call them, who look after him.

We drove around some familiar territory while we waited for my Mum’s Care Home to be open for visitors at 2.30 pm.  Maureen wasn’t sure if we were in Nottingham or Coventry some of the time.  I returned to the Close where we used to live a second time and Maureen had forgotten we had been there half an hour earlier.  On our second visit we called on some neighbours and spent a pleasant half an hour catching up.

Mum was sitting by herself when we arrived back at her Care home at 3pm.  We took her out for a short ride in the countryside calling in at Coombe Park for the traditional ’99’.  It was almost closing time for visitors when we got her back Home and we had to rush our farewells to avoid a reprimand.

Maureen had been in great form at both Homes interacting with residents and staff.  I thought she had rumbled my fraternisation with a 100 year old beauty at mum’s Care Home but Mrs A as she likes to be called was very discrete.  Mrs A tell me she will be 200 on her next birthday and I hope she will now invite us both to the party to cover out tracks.

The journey to and from Coventry was hard work.  On the way down Maureen moved from being hostile with all sorts of recriminations to hysteria: laughing from Leicester to Coventry.  On our return journey she was catatonic.  In retrospect I shouldn’t have taken advantage of her compassion: it was cruel to subject her to such an arduous day.  She paid a heavy price for her generosity at 2 am this morning.

‘Spark-out’ I had obviously not heard the Baby Monitor as she lay on the sofa.  When I made it downstairs she was cowering in the utility room saying: ‘you locked me in’.   She stood shaking for a while before I eased her back onto the sofa with the promise of a cup of tea.  My tiredness had left her exposed in return for her compassion: this must not happen again.  I think it is time to accept that travelling 250 miles in a day, with one driver, is no longer a sensible road for us to take on this journey.