Dementia Posts

A Different Kind of Dementia

A Different Kind of Dementia

When my mother began showing signs of dementia I read up on it as much as possible. Back then, everything I found was about Alzheimer’s. Mom clearly didn’t have that, so I didn’t know where to turn. Today I know that the Alzheimer’s Society supports people with any kind of dementia (of which there are a number), so if the symptoms below ring a bell for yourself or someone you know, contact the Alzheimer’s Society in your area for information and direction.

DEMENTIA WITH LEWY BODIES

Dementia with Lewy Bodies (DLB) accounts for up to 20 per cent of all dementia cases. As well as cognitive symptoms such as memory loss, confusion and changes in alertness, people with DLB also experience some challenging non-cognitive symptoms. These include vivid hallucinations, disturbed sleep, depression and problems with walking. The non-cognitive symptoms are common and can be extremely distressing for people with the condition and those who care for them.

dementia_s9_lewy_bodyCurrent treatments for the non-cognitive symptoms of Dementia with Lew Bodies are extremely limited. Research shows that, on average, people with DLB have a lower quality of life than people with other forms of dementia and are more likely to enter nursing sooner. Health and social care for people with DLB is therefore more expensive, with one study finding care costs to be over twice those for Alzheimer’s disease.

EARLY ONSET DEMENTIA

EOD, also called Younger Onset Dementia, is the term used for individuals who are diagnosed before the age of 65. Studies show that about 1 person in every 1,000 under the age of 65 develops dementia, some as young as 40.

A diagnosis does not mean the end of life as the person knows it. With education for those involved, adjustments in work schedules, and adequate support life can continue to be meaningful.

THE PURPLE ANGELS – AWARENESS

Purple Angel

Norm McNamara was diagnosed with EOD several years ago.Since that time he has spearheaded an awareness campaign called The Purple Angels, which has spread from the UK to other countries. And he does this with EOD.

WHAT DOES THE FUTURE LOOK LIKE?

If dementia has not yet touched your family or someone you know, you can be sure it will, one day. Lets begin with awareness. Lets form the belief that people with dementia can often remain independent and productive for a period after diagnosis. Lets educate ourselves so we can support their caregivers in constructive ways, and build future communities and programs with dementia supports in mind.  Each of us reading this now, may one day need those supports, so lets act today.

The Real Reason Caregivers Burn Out

The Real Reason Caregivers Burn Out

It wasn’t that she didn’t want to care for Charles anymore. The simple fact was that she no longer could. Her mental state, her exhaustion, her ability to think and make decisions was so far gone that she was no longer an effective caregiver and advocate for her husband. If she killed herself, someone would be appointed who could take appropriate care of the man she’d loved for over 50 years. It was the only option she could find.

Diane Akerman makes an interesting point in discussing her work with a suicide hotline.

Choice is a signature of our species. We choose to live, sometimes we choose our own death, but most of the time we make choices just to prove choice is possible. Above all else, we value the right to choose one’s destiny.

I considered this idea in relation to the caregiver-recipient dynamic.

As a caregiver, I tried to do everything my mother requested. Without naming it, I was acting on the belief that it was my responsibility to share with her my mental capacity so she could maintain her right to make choices.

While manageable in the short term, this philosophy wasn’t sustainable over time.

Sacrificial giving is appropriate on an occasional basis. Ongoing giving must be done out of our abundance.

Stress is defined as the state in which demand exceeds resources.

Without support in maintaining a balanced focus, a tipping point will come in the caregiver/recipient relationship where all choice has been given to the recipient, and the caregiver no longer has energy or ability to assess whether ‘no’ is an appropriate response. The caregiver has lost choice in her own life, and now is as vulnerable as the one she cares for, perhaps even more so.

Yes, caregivers need rest, need breaks, need services. But more importantly, they need choice.

Ask a caregiver, “What are your options?” If they cite barriers to every possible change, they’re not being difficult. They’ve lost the ability to choose.  it’s time to step in.
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Caregiver Balance – Is it possible?

Since my book, The Reluctant Caregiver, came out, I’ve been in contact with numerous caregivers. One aspect of their stories continues to trouble me.

Caregiver Balance Self-care

Balance

* BILL: Bill’s wife has quit her job to stay home and care for Bill’s father. Bill works extra hours, but it’s not enough to meet their expenses. Dad’s needs are increasing, and Bill’s wife is finding his care too much for her. Their marriage is in trouble, but Bill can’t bear the thought of putting his father in a home.

* RIANNE: Rianne home-schools her three children. When her widowed mother had a stroke, the family assumed Rianne and her husband would take Mom in. Her brother and two sisters, who work full time, feel Rianne is best situated to provide the care Mom needs. Rianne is adamant that her role as home-schooling mother can’t be stretched to encompass caregiving. Mom is to be discharged in a few weeks. The stalemate continues.

Caregiving, self-care* CLINT & CATHY: Clint and Cathy, brother and sister in their 60’s, found a decent nursing home for their father, and ensure his bills are covered. They are regularly criticized by other relatives because they visit Dad rarely, even though they live in the same town. As a result, their relationship with extended family is rapidly deteriorating. Clint and Cathy have chosen not to share the fact that their father brutalized them as children.

* BARBARA: Barb is reading up on assisted suicide and right-to-die laws as she feels her own terminal illness progress. Beyond her physical suffering is Barb’s fear that her family will be crushed under the burden of her care, but the idea of going into a home sets her into a state of panic.

* ALF: Alf’s children watch their dad’s health deteriorate as he refuses to accept help in caring for his wife who has dementia. Mom’s inability to now manage her diabetes is further escalating her needs, putting even more pressure on Dad.caregiver, balance, self-care

* MICHAEL: Michael’s children can’t believe their dad has taken steps to place Mom in a home. They’re now trying amongst themselves to figure out an alternative plan. Can they share Mom’s care, having her come to their homes on a rotating basis instead? Should they take out a loan and add a room onto one of their homes so she can live there? If they do that, whose home will be renovated? How will they cover the loan?

An Impossible Situation

Those who find themselves in the role of caregiver are often compelled to go to extremes. One denies or ignores the needs of their family member. Some expect another to provide the needed care. One family is torn apart, another is drawn together. Some go to the point of bankrupting themselves emotionally, physically, or financially, and can’t allow a change in the current situation.

Is balance possible?

If you’ve found balance, please share your story. Others need to hear it.

* Names, of course, have been changed.

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Caregiving Terminology – What do you think?

Some in the Health Care profession are working to change the terminology for caregiving. At a recent meeting I learned there was a strong push by some to replace  the term ‘care-giver’ with ‘care-partner’.

caregiving, dementia, alzheimers

In view of two couples who were in attendance, it seemed appropriate. One member of each couple suffered from dementia. The affected individuals spoke well, interacted appropriately, but had some lapses. Their spouses respectfully stepped in and asked permission to add some details. The one with dementia agreed. It was encouraging to watch them interact.

 

caregiver, dementia, alzheimers

I then thought of caregiving with someone who has physical concerns. Yes, care-partner seemed appropriate there as well.

After the meeting, I met with a friend whose husband has dementia. His condition has progressed way beyond that of the individuals who attended the meeting. I asked her what she thought of the term ‘care partner’. She guffawed. “Partner? We’re not partners in this. Everything is a battle. All I do is try to keep him safe and deal with his moods and flare-ups to settle things enough to have some peace. We’re not working together. His dementia makes him fight against everything that would allow me a little quality of life. So then I feel guilty fighting for myself, in view of what he’s dealing with. Partners? Not a chance.”

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Today I read an article, My Lovely Wife in the Psych Ward, written by Mark Lukach, the husband of a woman with mental illness. He put different words to what my friend was expressing.

 To keep myself sane I hurled myself at being an excellent psychotic-person’s spouse. I kept notes on what made things better and what made things worse. I made Giulia take her medicine as prescribed. Sometime this meant watching her swallow, then checking her mouth to confirm that she hadn’t hidden the pills under her tongue. This dynamic led us to become less than equals, which was unsettling. As I did with my students at school, I claimed an authority over Giulia. I told myself that I knew what was better for her than she did. I thought she should bend to my control and act as my well-behaved ward. This didn’t happen, of course. Psychotic people seldom behave. So when I said Take your pills or Go to sleep, she responded badly, often with Shut up or Go away. The conflict between us extended to the doctor’s office. I thought of myself as Giulia’s advocate, but often, with her physicians, I didn’t side with her. I wanted her to follow medical advice that she herself did not want to follow. I’d do anything to assist her doctors with their treatment plan. I was there to help.

This doesn’t sound like a partnership to me.

What do you think? Is care-partner a better term than care-giver? Or might it serve to minimize the reality of the caregiver’s position?

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Caregiving and Parasites

How much care should a Care-Getter get 

‘Til a Care-Giver can’t give care?

Caregiving Burnout

Forgive the offensive analogy that follows, but it’s the only accurate way to describe what I’m trying to get across.

Consider the flower and the bee. They represent a mutualistic or symbiotic relationship where two organisms of different species work together, each benefiting from the relationship.

Now think of a flea and a dog. They represent a parasitic relationship in which one organism lives off of another, harming it and possibly causing death.

Caregiving within a family evolves when a relationship changes from mutualistic to parasitic. Through no fault of their own, one member shifts from contributing to needing. In Alzheimer’s or dementia, the change is gradual. Other conditions, like a stroke, make it sudden and immediate.

In either case, one living being has now become the parasite, and the other the host. (As I said, forgive the harsh terms, but bear with me.)

The difference between the human and the animal world is that regardless of the shift in relationship, the one in need and the one filling that need are equally worthy of help, support and protection.

Our view must be that of two vulnerable individuals. The caregiver is now potentially at risk, just as the receiver is.

Know this. Where chronic conditions exist, the receiver’s condition will not improve. Neither is it stable. Simply put, Grandpa’s dementia, as it was when you visited last summer, is worse 6 months later. Grandma is working harder now to provide for his needs. By next summer, it’s going to be even more intense. What to do?

Caregiver Burnout

Plan.

Be ready to step in and provide hands on help; be it your own time and energy, or arranging for hired help,

Don’t brush aside comments warning that the caregiver/receiver relationship is breaking down. “Sometimes he pushes me.” or, “I get so angry I want to smash things.”

Talk. Come to an understanding before that critical turning point occurs. Formulating a sensitive plan of action can’t be done easily in a moment of crisis.  With the caregiver, or at least with other invested family members, come to a consensus as to what will take place, and what indicators will show that yes, the time is now.

That time may not come at all, but if it comes tomorrow, next week, or next year, you’ll be ready to act rather than react.

What kinds of plans has your family made? What plans do you wish you’d made before it was too late?