Category Archives: General

Dementia: Help Needed

General

At 3 am this morning I contacted Single Point of Access (our 24 hour Help Line) to inform them that I was unwell and would not be able to keep Maureen safe.  They have agreed to alert Rapid Response who will contact us after 7 am to arrange an assessment of our situation.

Maureen says ‘she needs someone to look after her and feels unable to tend to my needs’ as my nose drips like a tap, my head aches and I am unsteady on my feet.  Her confusion is paramount as she tries to make sense of the situation: ‘in a place that she doesn’t know with no staff on duty’.

 My suggestion is she is supported to do what any wife would do when her husband is unwell: ‘help the old man to get back on his feet’.  This would avoid a repetition of the distress that was caused on a previous occasion when she was dropped off at a Day Centre when I was unwell.

I am posting a little earlier than normal this morning as I await from contact from Rapid Responders.

Dementia: Trying To Avoid Carer Burnout

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I am beginning to feel that I’m on ‘Mission Impossible’ here: facing Carer Burnout. Yesterday I managed to have half an hour with Karen from the Home Treatment Team.  I have further meetings planned next week as I try to figure out a practical way forward on this journey that ensures my own well-being.

I will not be posting on any other pages on this blog for a while.

Dementia: I’m Totally Exhausted

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I am totally exhausted after another night of sleep deprivation.  Our day had been relatively good with a positive visit from ‘Flexible Sue’ our social worker.  We chatted openly and honestly and Maureen told me afterwards she ‘liked that lady’.  Sue contacted me later in the day to confirm our meeting to review my Carers Assessment towards the end of July.

It is difficult for me to remember all of the events of the night, and early this morning:  there were so many twists and turns and my recollection of what happened when is hazy.  Once again Maureen decided to stay on the sofa as I retired to bed.  She eventually came upstairs and wanted the marital bedroom to herself.  Her behaviour towards me being in ‘her bed’ was hostile so I retreated to the spare bedroom.  Later in the night she joined me in the spare room.  Then she had periods of restlessness before she returned to bed.

Her attitude this morning has ranged from cool to unpleasant.   It is likely that she is as worn out as me by ‘Musical Beds’ and needs to catch up on sleep.

There is no carer sit this morning.  With Chloe our regular being on holiday the Agency had planned to send someone who was totally unsuitable to our needs.  I will contact ‘Flexible Sue’ as soon as the lines open to see if a sit can be arranged later in the day. It is not going to be possible for me to get through today without a carer sit at some time in the day: I need some time out.

Fortunately I will get some real respite from the challenges that I’m facing here over the weekend.  Jill my sister, and her husband Rob, will be here with lunch on Saturday. Rob has built up a unique business: if he can’t fix a hydraulics problem no-one can.  He has a canny ability to see the wood from the trees.  It will be good to be in the company of kindred spirits who despite considerable challenges within their own lives are never too busy to offer real support to a very tired 70 year old Care Partner.

One positive that has emerged from a difficult night is the thought of moving our bedroom.  The prospect from the spare bedroom is very soothing on the eye: we overlook a golf course and the windows are not leaded.  I think it is worth considering moving so we no longer wake up to the sadness of bungalows across the road where widows have a lonely old life: food for thought on a dismal morning here in Cleethorpes.

Edit at 8.30 am:

Thank goodness for BBC News to remind me of 100 years on from the Somme and here I was wallowing in my own trivial battles: hope I have put that right on my Good Music page.

Dementia: Excellent Support

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I could not have asked for more appropriate support than I received yesterday.  When Gail, our carer, arrived she was so shocked by Maureen’s presentation that she advised me to get her ‘checked out’.  She hadn’t seen Maureen for a couple of weeks and was rather taken aback by this confused woman wandering around our front drive incoherent and looking lost.

My early morning phone call to the Home Treatment Team led to Karen a Mental Health Nurse arriving late afternoon.  Maureen was asleep when Karen arrived and we had a helpful chat until Maureen wandered into the kitchen half-awake from dozing on the sofa.  It was reassuring to hear Karen say that ‘we wouldn’t advise doing anything different’.  She also gave me some helpful coaching on how to deal with some of the issues that Maureen was raising: advising that distraction has its limitations and can lead to frustration when the issues that are raised are not adequately addressed.

Maureen clearly enjoyed Karen being here and once she had woken up was in good form. I listened intently as Karen confirmed her role not shirking the need to deal with sensitive issues of mental health and memory issues.  I’m confident that ‘Sitting next to Karen’ will increase my effectiveness as a Care Partner.

Flexible Sue, our social worker, is due mid-morning for one of her regular visits.  We caught up on Tuesday and she is scheduling a further Cares Assessment as soon as she finds space in her diary.

Maureen is singing this morning and there is no doubt that phone contact with one of her sons yesterday has really helped her mood.  The sun is shining here this morning so on we go with another lovely day pending in Costa del Cleethorpes.  

Dementia: Respecting Maureen’s Reality

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The phone lines were hot yesterday as I kept in touch with professional staff providing ongoing support.   I eventually decided not to seek additional ‘Boots On The Ground’ as Maureen’s focus was changing as the day progressed.  It was helpful that ‘Flexible Sue’ our social worker was back in work and she is making a scheduled home visit tomorrow.

Maureen is now articulating what I had suspected for some time: she is frightened when I am out of sight and doesn’t know where she is anymore.  I realise that this could be a dip in her presentation or a plateau; I’m hoping it is the former.  As my prime focus remains ‘minimising distress’ I have adopted the following ‘Working Position’, which I Emailed to family members and professional staff:

‘We will remain in Cleethorpes from now on.

There will be no more trips to Coventry or elsewhere.

Telephone calls need to be short and sweet: her reluctance to take calls is likely to continue.

Visits need to be in very small numbers for short periods of time.

My Blog details how things are going on a daily basis’.

I’m very grateful to Bill Malley one of my Line Managers when I worked at Coventry City Council for introducing me to the concept of ‘Working Positions’.  They are statements of intent sharing practical solutions to dynamic situations: ideal for dealing with dementia

Dementia: Caregiver’s 10 Commandments

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When you are as tired it is helpful to see a reminder of the basics of being a Care Partner.  I am very grateful to Daz Smith for sharing this on LinkedIn:

 

Dementia: Seeking Boots On The Ground

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Yesterday I received excellent support  from Social Services, Admiral Nursing and the Home Treatment Team.  Today I will be taking up the offer of the HTT to put ‘boots on the ground’.  When lines open I will be asking them to send someone out.  A short while afterwards I will be confirming that our Key Worker is back on duty and will be able to keep to her appointment here on Thursday morning.  Around 11am I will update Peter from Admiral Nursing as we arranged yesterday.

Maureen is in emotional turmoil this morning: it’s just another focus today.  She started off being very upset about her car being used without her permission.  She suggested giving it to her children so they would find it easier to visit Cleethorpes: she has forgotten they are all members of two car families.  I have told her I have removed the rotor arm to make sure no-one can use it – hope she doesn’t twig I haven’t a clue where it is on modern cars.  From now on it will remain on the drive unless she is in the passenger seat.

For the last hour or so she has been on the socks and shoes issue: nothing fits or is comfortable.  Last night she had the same complaint about underwear but my offer to take her to Marks and Sparks this morning has been long forgotten.

Maureen broke down in floods of tears yesterday evening when she declined taking a phone call from her son.  She told me later she daren’t stop what she was doing or she would forget how to bring the washing in and then there would be nothing she could do.  I couldn’t think of a response apart from holding her tight.

I have had a few hours’ sleep in between visits to the loo and Maureen waking for various reasons.  At 3.30 am she talked for some time about her father and what a wonderful man he was.  When this conversation was over I got up to sort more paperwork.  It’s a shame I never got to meet ‘Union Jack’ as we would have had a lot in common.

It looks like being another lovely day here in Cleethorpes and a bit of sunshine always helps us on our journey.

Edit: My mechanic has just told me rotor arms were phazed out in the 90’s: apparently there is no distributor now it’s a coil pack.   I’d better get myself a spark plug lead from somewhere just in case Maureen twigs I’m trying to pull a fast-one.

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: 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.