News Flash

I awaken to hear that a new report on Dementia says 45% of caregivers experience distress.  My immediate reaction was:  “Tell me something I don’t know.”  My next thought was: “I suppose the other 55% are only prone to the intermittent bouts of depression that does not last long enough to warrant attention.”  I have no doubt that every caregiver has those moments when the weight of care is, for a brief period onerous, too hard to bear.  Then you gird your loins and fueled by love, carry on.

The report was from the Canadian Institute for Health Information and looked at the impact on unpaid caregivers who were looking after their loved ones at home.  It mentions burnout, the emotional toll and the necessary extra daily activities among other factors that result in this distress.  Each situation is different but for me the most relevant is the emotional toll.

When friends inquire how I am doing I say I am fine, just tired.  That is true. Yes, I am physically tired but it is the emotional stress that gives me the moments of greatest distress.  When my husband holds a nightly conversation with his mother’s photograph, I am happy he has found a connection to the past that still resonates.  Yet, that is Alzheimer’s world. When I consider how my Bert and I worked together, planned together and the many chores he did with pleasure which falls on my shoulders now, I curse having to live in Alzheimer’s world

When I have to cajole my Bert to have his bath, or entice him with a sweet dessert for him to eat his salad, that is Alzheimer’s world.  When I have to lay out his outfit for the day, knowing my paragon of sartorial splendour would look like Bozo the clown if left to his own devices, that is Alzheimer’s world.

Two findings from the report were surprising.  It stated that:

In 2016, unpaid caregivers spent an estimated $1.4 billion on out-of-pocket costs. They devoted an average of 26 hours a week to providing care, compared with 17 hours for caregivers of other seniors.

The amount of the out-of-pocket expense was enormous I thought, until I began to add up the extra amounts expended for my Bert.  When multiplied by the number of unpaid caregivers it is a fact.  However, the real surprise was the number of hours of care.

The book, The 36 hour day, is almost required reading for caregivers of persons with dementia.  Some refer to it as the ‘Bible’ of dementia care. When I consider that I live a life for my Bert and also a life for myself, or try to do so, then my day is a 48 hour day.  In my opinion 26 hours a week even as an average, does not come close.

I never knew how much I valued my private time until Alzheimer’s entered my life.  My Bert and I were always together, but that was by choice.  I did not have a shadow permanently attached.  I could go to the bathroom without anyone coming to ‘see where you are’. I could make a shopping or lunch date with a friend.  Heck I could go to the hairdresser, manicurist, medical appointments, a Scandinavian trek with friends by myself.  I could go to Tai Chi or yoga, go on the computer or just get a cup of tea, my current book and curl up in my chosen spot to read without interruption. All that was lost. My shadow went everywhere with me. I have given up those activities that I cannot now fit into the two days Bert attends the Day Programme also known as his club. Every moment, every activity takes into consideration my Bert’s needs, wants, his schedules, his appointments, the state of his mind, his happiness.  Every plan is subject to the whims of the disease.

I applaud the researchers and authors of the report.  It validates what has been empirical knowledge. I hope it may result in some real support for caregivers.  Currently, the focus is on the disease and the patients.  However, Dementia is unique in that it may be the only disease that negatively affects the unpaid caregiver as much as it does their loved one.

The Meander: Perhaps my greatest emotional toll results from the illogical behaviour, the deep memory loss the disease has brought to my Bert.  My heart aches each time I want to say “Remember….”  I catch myself and I am filled with regret because I can no longer reminisce with a husband with whom I have created and shared a lifetime of amazing memories.

 

 

 

How do you do it? Alzheimer’s Society Help.

 

Once the diagnosis of Alzheimer’s disease was confirmed my first reaction was:  Oh my God, what do I do now?   I think this is the usual reaction.  Bashing your head against the nearest wall (bad headache), tearing out your hair (pre-mature baldness), screaming to the high heavens (how uncouth)or jumping off the nearest cliff (splat) may come to mind but none of that will work

So, what do you do?  Find help.  In some cases that may be easier said than done but fortunately in my case, living in Canada and in a City with a high  senior population and services gave me an edge.

Once you have confirmation, if you just go on your computer and start a search for dementia or Alzheimer’s disease you will be able to build that cliff from maybe just one percent of the information you see and it would still take you a while to hit ‘splat’.  Once your eyes uncross and your mind un-boggles find the home page of your national Alzheimer’s society, www.alzheimer.ca in Canada. Help is immediate as you will get direction to your Provincial and Regional and Local offices.  You may be tempted to linger and start reading right away when you see the Quick Links.  Don’t.  Go directly to your local office.  You will thank me when a quick call results in an invitation to visit accompanied by a brief conversation on the kind of services provided.

Why stress ‘local’?  On my very first visit I received information about current programmes, workshops, seminars, activities for both loved one and caregiver, jointly and separately.   First Steps and Next Steps are just two seminar series that help you get a grip on the disease, the impact on both partners and future considerations.   They are exactly as stated.  What to do and expect first, what comes next including making a will, financial issues, medications control, real  estate, funereal funeral considerations,  all done by the appropriate professionals. Your local office is connected to resources and services.  No need to wonder why all this is important.  Let’s be practical, some things had better be done before your loved one has lost too many brain cells to know what is happening.  The legal ramifications alone can be beyond horrendous. Also, as long as your partner can function well,  I know that two heads are better than one.

But, best of all I was connected to a counsellor.  I could call the office ask for a particular person, tell her/him my issue and be guided, helped, and given information so that I could make informed decisions about my Bert. Local also meant that the places I needed to go, the services I needed to access were all within easy reach.  My local office had not just a description of the service and address, they also had a name.  I could ask for a person.  They also made some calls on our behalf.

The people in my local office are extraordinary.  They will help you to curb your attempt to take every brochure available, explaining what should come first.  They are professional, caring, experienced and excellent listeners. They are the biggest boosters of caregivers and remind you to take care of you first, so you are able to take care of your loved one.  This is one of the PhD courses at my Alzheimer’s University.  It is so difficult to do this. Caregivers need to be reminded and your counsellor will do the reminding..

This was my first stop and it is still a most important link.  If I have not connected with my counsellor for a while I will get a call just asking how things are or to give me some relevant information.  She is aware of my Lifeline, the wonderful support group, as all we Lifers are connected to our local Alzheimer’s office. She applauds that.  She knows that the Lifers connection is very important.

The Meander:  Sometimes we find it hard to ask for help.  Being a caregiver will soon cure you of that.  You cannot do it alone.  You cannot do it alone. Ask for and take any help you can get.  We all need it. My Lifeline family and my Alzheimer’s Society local office are two of my companions on this journey.  I am well served and blessed.

 

Adult Day Programmes

It was my local chapter of the Alzheimer’s Society Canada that first introduced me to day programmes.  The brochure was just another among the many I received.  No need to digest it yet.  The Adult Day Programme was for ‘later’ when my Bert was much further along in Alzheimer’s world.  It never occurred to me that I might need it as much as he did.

Carers are like that.  We rarely remember to think of ourselves.  Day Programmes were for the loved ones and for ‘down the road’.  Let’s leave that until they really need it.  At least, I thought so until the day I actually decided to count how many times in one hour I had the following conversation:

“Do you know what? Guess what?”   I smile because I know what is coming but I have to answer: “What?” A laugh and: “I love you.”  I answer: “I love you too.”

That conversation occurred fifteen times in one hour.  I was tired, fed up and the next time the question came, in frustration, I replied: “Ask me that one more time and my answer will be that I hate you!” I was shocked.    In consternation I called my counsellor and blurted:  “Have you heard of anyone being upset at being told that they are loved?”

I felt so very guilty. Even the caregiver’s mantra: “It is not my loved one, it is the disease,” did not work.  This was my Bert really telling me that he loved me.  It was the disease that resulted in the incessant repetition. He really did not remember that he had asked me the question five minutes before.  Coupled with this was the intense ‘shadowing’. I felt claustrophobic. HELP!

Yes, I needed some respite. So I went through the detailed process and registered at the local Day Programme.  The wait list was nine to 18 months!  Could I survive?  I did, and it was worth the wait. Yet, when my sanity saving call came I panicked.  What will Bert do without me for six or seven hours in a day?

This is my paean to the providers and staff of adult day programmes everywhere.  My greatest appreciation is that day programmes are for both patient and caregiver. Two days per week from 9 a.m. to 4 p.m.  my Bert is in a non-judgemental environment of acceptance where he is both mentally and physically stimulated.  He is socially engaged in programmes designed specifically for adults with dementia.

Bert is with professional staff and volunteers of the highest calibre who care with love. He receives a hot, well balanced lunch and snacks.  The staff will tailor the activities to suit the capabilities of the group and at times to the individual.  Music, art, Tai chi, games, crafts and relaxation time, one on one conversation and hugs are all on the agenda. It is a cheerful atmosphere, each one called by name and greeted with genuine warmth.

For the caregiver, in addition to the benefits for your loved ones are the benefits for YOU. As a caregiver I can get to medical appointments, do chores, go to the hairdressers, shop, have a coffee with friends, play Mah jong, read, keep in touch with friends via telephone or email and go the bathroom without worry and without my shadow. I can breathe.  What a luxury to have a little time for self.

Was it easy?  Not at all.  Dementia and separation anxiety go hand in hand. There were many mornings I sat in my car and wept.  “Why are you leaving me here?  Are you coming to pick me up? What time? I want to be with you, I miss you. Why can’t I stay home?”

Now I do not have to fight world war three to get my Bert ready for his ‘club’.  On delivery he gets four kisses that say he will see me at 4 o’clock.  The greeting staff member may count along. Some days he is laughing when I pick him up.  Some days the anxiety is there.  He loves his club but he loves me more.  He is so happy when he sees me.  Thanks to the day programme I am happy to see him too.

The Meander:  Many times you will get the question: “How do you do it?”  Best answer: “With a lot of help”.  Getting your loved one into an Adult Day Programme is among the best help you can get.  A good adult day programme is an environment of acceptance providing care and support for both patient and carers.  For a little while you can get away from living in Alzheimer’s world.

“You know what?” “Guess what?”  Yes, still it comes, but I no longer count!

For Caregivers: All Mothers!

Happy Mother’s Day to all mothers!

To those who never gave birth but are mothers of the heart

To those who are mothers on the second shift

To caregiver mothers who are mothers to husbands, mothers, fathers, aunts, uncles, siblings, friends grandparents, partners

To men who are caregiver mothers to wives, mothers, fathers, siblings, grandparents, friends, partners.

 

 

Today, I want to be mother to all caregiver mothers, to embrace you, to give you hugs, to let you know that as a caregiver mother I do know the sorrow, the joy and love of being a caregiver mother.

Here’s to another perfect day of doing and an infinitesimal token of appreciation for all we do.

 

 

Happy Mother’s Day!

The Meander:  Every week I look forward to receiving the Alzheimer’s Weekly & Dementia Weekly Newsletter.  It is filled with information on the many forms of dementia, new research, caregiver support and ideas to ease our special journey.  It links to other publications and organizations. Each issue begins with a Thought for the Week similar to the one reprinted above.   I must confess that in addition to the articles I do look forward to these gems with  anticipation.

Thank you John Wooden.

 

Now we are nine

It is a universal truth that we will die, but as a caregiver that reality takes on an immediacy that is incomprehensible to those who do not travel this journey.  Yet it is still shrouded in mystery.   It is a wallpaper always in the background of every new observance of slow deterioration. Yes, we will die and yes, we are caring for someone who is slowly dying.  There is a reason that Alzheimer’s disease is referred to as a ‘Slow death’.  Yet, like all of us we do not know when or how or even where.

Current statistics state that 80 percent of caregiver’s will suffer from depression. Not documented is the percentage of caregivers who die before the one with dementia.  That happens and I would hazard a guess it occurs more frequently than reported.  My Lifeline Group often voice the sentiment that they do not want to die before their spouses.  We all want to care for our loved ones until the end.  Yet we know we have no control over that.  This fear is just one of the rungs on the ladder of depression.

The fact is that Alzheimer’s disease leads to death.  We acknowledge that but when it happens it is no less traumatic than any other passing of a loved one. So we experienced a deep sadness when our Lifeline Group of five couples was reduced to nine. One in the family had died.  We mourned together.  We could not help but wonder who would be next.

When I got the news a year ago today, it hurt.  I had to mark the moment somehow so I sat and wrote:

Now we are 9                                                                                

We met by chance but perhaps not

We ten self-selected from a disparate group

United by the ever mutating forgetfulness

Of partners here but not here; changed yet unchanging

Living in two worlds; alternate realities.

We ten bonded deciding to share, to care, to laugh, to love, to live.

There is just one escape, we know it

It is the same for all – the ultimate equalizer.

We refused to speculate or predict

How could we?

Each day, learning, all effort focussed on doing, doing, doing.

Each day new, unexpected, mysterious, unknown, surprising,

Each day its own journey within the journey

Now the news – one is gone.

We contemplate the expected unexpected and wonder

We are sad for the death and sadder for the living.

We mourn the loss

We – the Ten that are now

The 9.

The Meander: It is good we do not know the future and it does no good to speculate.  One day at a time is the way we must live as each one is new, different and unique to each of us.  We carry on, we share and we continue to care for each other.  Today my heart sighs for the two who is now the one.

Alzheimer’s University

 

Alzheimer’s University

My Lifeline Group is very well educated.  We are all geniuses.  It is a requirement if we are to be successful at Alzheimer’s University. The tagline for my blog is Standing Still is not an Option.  At Alzheimer’s University failure is not an option.

Truth be told I think we are still at the first year level, so arduous and complex is this University.  At this university first year may span one year or four years or more.  An Alzheimer’s degree is a multi-disciplinary degree with many courses.  No specialization offered as we have to do every course no matter how arcane it seems or whether we have an interest in the subject or not.  We must slog through the many topics. So with tongue firmly in cheek, here are a few of the courses:

Mastering questions – the same ones at least five times in thirty minutes in year one.  By year three it may be ten in ten minutes.

Seeking Logic in the illogical -Advanced Seminar that may have you being five persons, literally.

Confronting stigma – this is a much needed course to face the world and explain: “It’s a disease”.

Comedy unCentral – seeing the ridiculous in clearly highly emotional and terrifying moments.

Continuous patience module – you are required to show more and more patience in increasingly  stultifying and incrementally frustrating moments and which will include seeking divine intervention!

Living in two worlds – a core subject in which you learn to identify the real and Alzheimer’s world and find the ability to move between the two seamlessly.

Therapeutic lying, master’s level– a practicum

Creative thinking and solutions to banal issues like hiding the tooth cup or spraying the alligator away.

Accepting the abnormal as normal as in looking for the bread basket in the laundry room, in the washer.

Putting yourself first – a required course for caregivers. Success in this gives you a Ph.D degree.  This one is taught every semester for as long as the journey lasts and is almost unattainable. As I write this I can imagine fellow caregivers proclaiming sarcastically: “As if’!

Eliminating Tiredness – a professor is still being sought to teach this course. Qualified applicants may apply here!

The Meander: As the journey unfolds each of these ‘subjects’ will have a post or two.  Each day brings new insights.  I will share them willingly in the hope it brings a smile or some new understanding of this special path we caregivers travel together. (Illustration courtesy of Pixaby)

 

Be Careful What You Wish For

The day started out as usual.  It was a WWWW (Wonderful Wild and Wacky Wednesday) and Minds in Motion was not in session so that meant the Lifeline group (See previous post: My Lifeline) would be meeting at Artisano Bakery Cafe.  It is always a positive day.  Bert was happy when I told him where we were going. He does not remember the ‘friends’ from one week to the next though he recognizes them when he sees them and he knows they are ‘nice people’. He says he likes that I laugh and talk with the ‘girls’. I asked about his time and he says the ‘fellows’ are nice too and they like to tease each other.

Let me explain about the seating arrangements when we go to Artisano.  Caregivers sit together on one end of the table and our spouses sit together at the other end.  Just one slight aberration in that there are five couples four of whom comprise a female caregiver and male spouse. That means the male caregiver is sitting with the men while his wife sits with the women. We try to engage and involve the female patient in the conversation and most times it works but we do feel some sympathy for her husband who must stick handle through stories that are the same week after week. He has become most adept at doing that and succeeds in bringing a bit of variety to the proceedings.

This day we had finished our updates.  Everyone was upbeat. We had all had a few nights of uninterrupted sleep.  Always welcomed. One had a recommendation for a resource and, we reminded each other to register for the next Minds in Motion session as they get filled up fast. The conversation turned to things we wished could be.  We talked about plans that are now on hold, dreams that would remain unfulfilled.

Our male caregiver and I had just gone through a scheduled assessment with our spouses and the results turned out the same.  Our respective spouses were now 4-5 years old, mentally. I spontaneously and in frustration said: “Be careful what you wish for.  I have been wishing and hoping for years for a grandchild but I never expected it to be my husband”. There was a pregnant pause and then the laughter broke out.  I roared and all the others joined in.

We were all in tears as we laughed uncontrollably.  We could not look at each other.  Our female patient looked totally at a loss even as she laughed along.  Her husband, who had heard the remark, was shaking with laughter.  Then Bert looked over at us and said: “Well, they are having a good time”.  O, my aching stomach!  That set us off even more.  Then I wondered out loud if that would make him his own grandpa like that old ditty. More stitches. Stop.  Please stop.  That was the day we were certain the next day’s headline would read: ‘Noisy seniors evicted from coffee shop.’

The meander: We all know that laughter is the best medicine.  We prove it among ourselves and make sure we laugh at least once a day.  No, we were not booted out. Thank goodness.

My Lifeline

My lifeline

Why is my WWWW (wonderful wild and wacky Wednesday) group so important to me? Let me count the ways:

They are the people, a special group of friends with whom I can talk about anything  Alzheimer’s  and not start from the beginning each time.  The conversation is continuous.

They understand at the most profound level what the journey entails.

They make things seem normal, whatever that means for that moment.

No self-censorship is necessary; no massaging of the message or making things look pretty.  Instead we share to learn more.

When one says: “Last night we had a big flare up” a fire does not come to mind but we ask instead: “Did you have to go to the Emergency?”

If I say that a couple more cells died yesterday. No-one looks quizzical or thinks I am ill but will instead ask: “New behaviour?  What did you notice?”

If we ask another if he is the husband today and he answers that he thinks he was number four earlier but could be number two at the moment, we know exactly what he is saying and nod sagely.

We throw around words like, Fronto-temporal dementia or Pick’s disease, Lewy body, vascular dementia, plaques and tangles and many other convoluted and quasi-medical profundities that we are just beginning to decipher and that are specific to dementia. It has its own unique jargon and we are so adept at it.

We sigh at shadowing, anxiety attacks, hallucinations, sundowner syndrome.

We are multilingual or at the least bilingual. So proficient are we at Alzheimer Speak.

We hug and can feel the comfort pass from one to the other.  I believe in the magic of hugs.  It works.

We also live in two worlds. Not an imaginary world or a fantasy world. Those worlds you conjure up and are able to control.  No.  We live in two complete, separate worlds. The real world and that alternate reality which is Alzheimer’s world.  We are true geniuses.

The Meander:  The company of friends, of people in the same boat who can laugh with you and lighten the darkness, who walk the road with you, who care and share is the caregiver’s lifeline.

WWWW means Wonderful, Wild and Wacky Wednesdays

WWWW means Wonderful, Wild and Wacky Wednesdays

Wednesday mornings are wonderful. We laugh. It is one big inside joke for ten people.

In 2014 my husband was diagnosed with Dementia. I was given a host of print resources, contact information for various support agencies and groups.  I contacted the local chapter of the Alzheimer’s Society. I got more information and schedules for upcoming seminars that could prove useful. It all seemed overwhelming but I knew this disease was not to be taken lightly, so I just decided to take things slowly as I learned and raged against the unfairness of it all.

We were told of a new programme called Minds in Motion.  Funding had been secured for an eight week session every Wednesday morning from 10 a.m. to 12 noon.  The first hour would consist of gentle exercise, mostly while seated and the second hour was for socializing.  There would be games, puzzles, talking, telling our own stories.  Minds in Motion is a direct response to the proven scientific fact that social interaction and exercise is vital for dementia patients to help them to keep their brains and bodies functioning for as long as possible. In fact that is a requirement for everyone. Minds in Motion is a programme for both caregivers and patients. Perfect.

I signed on, and so did 12 other couples. Minds in Motion was such a success, the only negative feedback was that we needed more sessions.

Minds in Motion created a community.  As another series drew to a close we wanted some continuity.  We had found a common ground and wanted to stay in touch. One suggested we all go to lunch after the last session.  We did and at lunch we spoke about how valuable the sessions were and hoped they would continue.  Another wondered if we could meet for coffee on Wednesday mornings since we already had that time reserved for Alzheimer’s activities. There was general agreement.  It would be purely voluntary. Anyone who wanted to would meet at a nearby coffee shop on Wednesday mornings.

Five couples showed up.  Thus was born WWWW Wonderful, Wild and Wacky Wednesdays.  This day is sacrosanct. Wednesday is reserved for our couples activity, either Minds in Motion or coffee time and only missed for priorities such as illness, medical appointments and laboratory tests.  It is a lifeline in a world turned upside down, a bridge between our two worlds,  the real and the one known as Alzheimer’s world. It is my lifeline. Wednesday mornings make the insane, sane.

The Meander: Five couples showed up. Five couples, nearly strangers now best friends. Five couples connected by a dread disease. Five couples who together try to outwrestle dementia. Five couples who support each other and have magically found solace and laughter. Every caregiver needs a lifeline like this.