[This is the sixth (and last) in a series of articles from Guest Writer Catherine Mossop narrating her husband, Brian’s, journey with the dispiriting effects of dementia, likely Alzheimer’s Disease. In our last installment – Musical Mind – we read of the relief Catherine, and Brian’s friend Jeff, felt when Brian, despite being in late stages of his affliction, picked up his harmonica and played, and relaxed into the music. 

[We also learned through this series, often only hinted at, of the tremendous strain Catherine was under to care for Brian, deal with others’ misunderstanding the situation, live in fear for her own safety, and grieve for the gradual loss of her husband. This is her story.]

I wrote this series about our – Brian’s and my – Alzheimer’s Dementia journey to share some of the insights I gained about this dreadful disease, and in addition the experience of those care-giving partners out there who are as bewildered as I was. I am a strong and resilient professional woman, resourceful, and a fierce advocate, but this journey has been the most challenging – emotionally and intellectually – of anything I’ve had to deal with in my life. What ought to have been the least of my difficulties, navigating the health system in Ontario was tremendously frustrating. I began to wonder how care-giving partners without the knowledge and toughness I have, cope on their journeys with their loved-one. This article is for them. 

Petro-Canada CareMakers Foundation has produced a 1 minute commercial that effectively captures the plight of the Care-giver of an Alzheimer’s patient:

https://www.facebook.com/share/r/1G4WnqkFj1/xxx

Everybody ‘knows’ about Dementia, and Alzheimer’s, but beyond general awareness, I’ve discovered there is very little pragmatic support for the afflicted and their caregivers. Dementia doesn’t have cachet – it is seen as ‘normal’, or worse, an embarrassment. And so, appreciation of the heavy burden on the primary caregiver is lacking. Some in Brian’s family didn’t want anyone to know he was on the Dementia journey! When I organized a 70^th – and likely last – birthday party for him, I invited family and friends to bring favourite photos and a story that could go into creating a memory book; some of Brian’s closest family not only refused to contribute, they were reluctant to even show up. They were aghast I would do such an event – I guess they thought it was like a wake. I have no regrets. His memory book became a staple in his care program – his care team tell me it is one of the best they have ever had and use it daily.

My care goals for Brian, and me, in his dementia journey, fall into three simple categories: 

1. To have no regrets
2. To be safe and assure all who support his journey, are safe
3. For him to feel loved and be at peace.

To do this, the care partner needs support; and there is a shocking dearth of support systems out there. Dementia may manifest differently from one person to the next, and from stage to stage, but every care partner begins this journey bewildered and ends in exhaustion. The Dementia Journey is a ‘living grief’. The primary caregiver supports the patient, but who supports the caregiver? 

Here are things you can do to support a care partner^[1]:

Paperwork 

Canadians are reticent and don’t like to interfere in things they regard as ‘personal’. Get over yourself. The caregiver needs help. Even if they say they can manage, help. Ask the questions, especially of the ‘awkward kind’ – legal stuff, and the money. This is of ‘Do Not Pass Go’ importance. Asking good questions helps steer people toward good decisions. If you are the care giver, take this advice, and ignore, politely, the people with empty advice and ‘you shoulds’.

Here are the critical administrative things that must be taken care of.  The caregiver may have little capacity in this area so what can you do to help? Ask questions about:

• Wills: Inquire that they are in place, reviewed and adjusted as needed. This ought to have been done long before moving from Mild Cognitive Impairment to a more acute disease state but the anxious caregiver may procrastinate. Ask. Help them find a lawyer.
• Power of Attorney for Financial: as for Wills, you need to ask the caregiver if a POA is in place and is the best person identified as POA. This is essential as banks need a copy of the POA and at some point a Medical Letter will be required indicating the patient is no longer capable of making financial decisions. Timing is important. The POA is best done before any illness or disability is indicated.
  • The POA should be ready before it is needed. Ours were in place when we bought our first house, 10 years before Brian showed any sign of disability. I already paid all bills; I cancelled his credit card, had a restriction placed on his debit card and gave him cash (he liked having cash in his wallet – today he keeps old Canadian Tire bills). The need of a Medical Letter was only required for the Bank and when he was admitted to Long Term Care.
• Permanent Disability designation: for tax purposes and Long Term Care benefits. The Family Doctor completes the form online for the Canada Revenue Agency. Paper forms are no longer available. 
• Power of Attorney for Medical: Caring for the care-giver includes asking difficult sensitive questions. This is one. As Alzheimer’s is a terminal disease, the POA Medical must be in place and might need an adjustment to include a DNR – this is a deeply personal decision and needs thinking through.
  • The POA Medical is done at the same time as the Will and POA Financial. Implementing it is complex and filled with grey zones. Discuss with a lawyer and your social worker. The person who holds the POA needs to have this on file with the Doctor so that you can attend medical appointments otherwise the privacy and confidentiality requirement remains in place. Complications can arise if the Caregiver and the POA is not the same person. The carer of the Care giver – you – can assist in this delicate area. 
• Care Planning: This is much more detailed than the POA, and includes thinking about care from now to end of life and should clearly outline what the loved-one wants: any advanced funeral planning, ‘what happens if’ scenarios, and what instructions are to be given to the health team? what conditions apply in DNR (Do Not Resuscitate); what is ‘no tubes’?; what is ‘Comfort Care’? Who pays for what? These are emotional conversations and top the list of important – the social worker assigned to your case is a key resource. As a carer for the caregiver, what you can do to help is to make sure they access these resources.
• Estate Planning – this covers everything under the sun and more. I constructed a binder with sleeves for original documents, lists and instructions. There are resources such as: I’m Dead, Now What?;  Sorry, It’s Your Problem Now, Because I’m Dead; and F*CK I’m Dead, Now What? – all on Amazon. Estate Planning also includes what to do in the event the care provider gets hit by the proverbial bus. Unfortunately, I know of several incidents where the care provider died before the afflicted Loved One; the planning documents become crucial to whoever steps in in place of the original care partner. People close to the care giver should be fully briefed on what is going on; if you’re one of those people, ask. 
• Call an ALL-Family meeting. All the family members who have any connection to the patient should be informed of what is happening and what is planned. It can be a difficult meeting. The Alzheimer’s Society will facilitate this meeting if requested. Review the entire Estate Plan with them. Surface all the issues and be clear on what is what: ‘there is no money flowing to you’, ‘I will look after all financial and medical expenses’, that sort of stuff. As a friend of the caregiver you may be able to give support.

Peace of Mind. 

All these formal processes are tremendously draining and doubly so for the inexperienced. When these things are resolved the stress on the Caregiver is lessened. Don’t assume she’s coping – she’s not. Give her a hand.

Ongoing Support

Once Peace of Mind is sorted out, ongoing support is all about keeping the care partner alive and healthy. I’m not being dramatic.

Friends or family members of a care partner mean well but often have no idea what the caregiver is actually going through.

Brian experienced tremendous fear and reacted strongly to situations he didn’t expect – this is called ‘responsive behaviour’ in the medical word (I know, peculiar use of the term). Not all Dementia patients become aggressive. Some are 90-year-old smiling sweeties, others 60-year-old confused puppies, some are shockingly violent – and everything in-between. The disease can be unpredictable and changeable. Consequently, the care-giver must be constantly vigilant and appropriately responsive. It’s exhausting. You as the outside party might not see it; the care-giver has to live with it.

Living in a heightened state of self-preservation day in and day out was all-consuming and the effects touched everything: how I responded to sudden movement, how new information was presented, and received, how I communicated generally, how I made decisions. Unrelenting anxiety creates constant tension. ‘Focus and Stay Alive!’ became my mantra. 

Providing meaningful support is the hard part of caring for the Caregiver. My world shrank to being a prisoner in my own home. My reprieve was my two sisters who visited every three weeks or so, and my husband’s son, who gave me 3-hours off once a month. I needed more than that but that’s all they could provide – keep in mind, Brian wouldn’t allow anyone else into the house; after an hour he would become agitated, and my sisters would need to leave. 

The Alzheimer’s Society does a brilliant job providing help and information to the Caregiver^[2]. But they have very limited resources – and getting tighter with increasing numbers of cases over the next 10 years. This support is incredibly valuable – much more is needed.

The Alzheimer’s Society has an outstanding library online, learning and support programs for care givers, and programs for the loved one (group programs, volunteer visitors), but I was very restricted as I couldn’t be away from Brian and he wouldn’t allow ‘strangers’ into our house. Nor could I access any other community programs because of his unpredictable ‘responsive behaviours’. I was isolated. If you are known and have the capacity to sit with the loved one, this can allow the Caregiver some respite.

My best resources support have been other caregivers who share their experiences and tidbits of advice that help make this difficult journey just a tiny bit easier. Some people may choose not to access the Alzheimer’s Society programs, but everyone has access to the library, and all caregivers need to know they are not alone. I am thinking of you.

Things you can do to help a care provider:

• Instead of saying “let me know if there is anything I can do to help” – in extreme stress, people simply can’t answer that question – try: 
  • Would it be helpful for me to cook and drop off a meal for you
  • I can stay with your person for an hour or a few hours so you can go out/take a break/visit a friend/go shopping/go to counselling or support group – lets set a schedule
  • Let’s schedule some time for me to do an activity with your person/play music/read-to/watch a movie, to give you a break
  • Shall I create a play-list for your person
  • May I take your person out to lunch (probably not possible in advanced stages), for a walk, for an activity (find a Christmas tree, garden centre, apple picking, etc.) so you can have time just for you?
  • Please let me … help with the garden, shovel snow, trim trees – fill in the blank
  • May I help you find respite care/community resources/a volunteer visitor/a hand and foot nurse to come do their nails for you
  • I could collect stories and photos for an album-based memory book (make 2 copies so you don’t panic when one disappears)
  • I could create a folding story-board for you with maps of places you have travelled
  • Let me help put together a set of memory cards 
    • I created a deck of 40 cards wherein each card is photo of an item, memory, person, activity that he enjoyed in the past – gardens, cycling, musical instruments, people photos. (I had them cut and laminated at Staples/Business Depot. Brian sorts the cards with his activities therapist.)
  • May I drive you to appointments/outings/lunch/shopping?
  • I could knit/crochet/quilt a lap blanket for your person. (Use acrylic yarns, not good wool!  When the item goes to LTC later-on it is boiled to prevent disease transmission.) 
  • Let me organize a contractor to install safety changes.

• Instead of saying “you need to look after yourself” (not surprising, this statement is one of the least helpful things others say to a care partner) – try:
  • I could go through your home to identify the things that might be dangerous (knives, hunting/fishing gear, machetes, chemicals, chain saws (all are weapons); I’ll sneak them out of the house and keep them at my place for the time being 
  • I’ll look into getting access to support programs for you from the community/Alzheimer’s Society 
  • what is the safety plan for you. Do you know where to go? How can I be part of your plan; can I provide an overnight hotel stay as part of your safety plan
  • Can I help find a visiting support service for you/your person
  • I’ll call you 1X per week as your personal check-in
  • May I teach you how to knit – knitting and crochet are meditative arts that are known to reduce stress; or maybe do jigsaw puzzles together
  • Can I bring all or part of a special occasion meal, help you celebrate your birthday
  • I can be your ‘make a call to distract and diffuse’ 
  • I can get special dementia door locks and have them installed for you 

Spouses live the paradox. I am Brian’s wife – this is the person I love – but I no longer have a life-sharing partner – I became the primary care provider. Yet, the precarious life I lived was not fully appreciated by others. Family members of an Alzheimer’s patient often only see and experience moderate manifestations of the disease, not the reality the primary caregiver lives.

A known quality of the early-stage Alzheimer’s persons is their ability to rally for a few hours, appearing quite normal. But this is not sustainable. For example, at a special event – Thanksgiving say – visitors may see the rally, and only occasional memory lapses; they do not experience the confusion, frustration, fear, do-overs, sudden outbursts, the anguish that is the reality of the disease. And as the disease progresses the reality the care giver lives becomes more and more precarious until finally, the patient – the Loved One – is confined to a Long Term Care institution.

Secondary carers (family and friends) may not appreciate that the spouse-of does not have options that are normally assumed. In caring for the caregiver, being patient and understanding is paramount – even in your own frustration with the situation, this is not the time to discount, deny, falsely accuse, or harangue health care workers, personalize, ignore, hide, ghost, build an alternate reality, gaslight the care giver ….

It takes courage for a primary care provider to say, “I need help, even for just an hour, please come.” As a carer of a caregiver, good intentions are not enough. When a primary care provider says they need your help, please take this ask seriously – you could be saving the caregiver’s life.

Catherine Mossop, reporting to you from Cobourg, Ontario

(With contributions from Doug Jordan, Kanata, Ontario.)

© Catherine Mossop & AFS Publishing

All rights reserved. No part of these blogs and newsletters may be reproduced without the express permission of the author and/or the publisher, except upon payment of a small royalty, 5¢. 

---

^[1] Care-givers support family members with other afflictions besides Alzheimer’s/ Dementia: people and kids with disabilities, physical and mental; cerebral palsy; Parkinsons, multiple sclerosis and ALS, terminal diseases, cancer. They are all struggling to care for their loved-ones and don’t get much care themselves.

^[2] There are a number of Associations providing support to care-givers, e.g., Carers Canada, Ontario Care giver, Petro-Canada Caremakers, but for care-givers of dementia sufferers, The Alzheimer’s Society is most comprehensive.