Uncategorized | Blog | My Mothers' Caregiver
An elder care roadmap & observations from the journey
Blog
Migrated BLOG
Uncategorized

The Launch of the Lived Experience Cafe!

 

The Lived Experience Cafe:  Learning from the experiences of those affected by dementia and other related diagnoses. Come share your suggestions for change.

 


I know it has been awhile since I've shared on here, I've been working on something and it is finally ready! 

 In the past few months have had the privilege of meeting or talking with over 80 persons affected by dementia �" both caregivers, friends/relatives, adult-children, and persons in the early stages of the disease as part of the Lived Experience Network project. So much valuable information for change and passionate stories have been shared.

Thank you!

 I am very pleased to inform you that March 1, 2014, we are launching the "Lived Experience Café€ at www.dementiacrossroads.ca. This online space is for you to leave your advice and suggestions for change on various discussion forums and to participate in Live Chat Events. The date for the first Live Chat event will be announced soon.

 Special thanks to Dr. Dallas Seitz for letting us piggy-back on his project Dementia Crossroads and to share his website. The rest will be coming soon.

Some of you have asked what I am doing with all the information I collect. Firstly, I have been able to be part of Process Planning and Guiding Coalition meetings with Behavioural Support Services of Providence Care, sharing your observations as they relate to the creation and development of new services. I have also served on a review panel for behavioural support plans that are being created across the province. Secondly, I just submitted a preliminary report to our team leaders Kathy Baker and Dr. Ken Le Clair, detailing the reoccurring themes I have gathered in our conversations. A complete report will be submitted to elder health care leaders across the South East region later this Spring.

So far, I have connected through face to face meetings and telephone conversations with people from Brighton, Belleville, Trenton, Frankford, Belleville, Perth, Ganonoque, Kingston, Bancroft and Prince Edward County. In the next two months, I am very excited to be visiting groups in Madoc,Tweed,Smith Falls and Brockville. The phone calls and emails come in every week.

I know how much the support I find here on www.mymotherscaregiver.com means to me. It is my pleasure to be able to come alongside and develop another such community - one designed to help make change for seniors in South Eastern Ontario. How exciting!

I look forward to speaking with you on the Lived Experience Café at www.dementiacrossroads.ca. Please come and join up and start the conversations rolling.


with thanks,

Sharon Osvald, Lived Experience Coordinator





Comments
Login to post comments.
Day by Day

 

Image

It’s funny, but some days I just can’t wait to get to this blog.

Some days I want to reach out and connect to people and walk alongside them. Some days I am fired up about things I think just don’t seem fair or right. Other times, I’ve wanted to let you know what someone else is doing to help caregivers. It is hard to believe I have been documenting my mother and my journey since August 2011. Seinfeld would say it is a blog “about nothing.”

But lately, I feel like I have so little to say that hasn’t already been said.

Most often, I just plug along, day by day, just like you do. I visit my mother. I do most of the talking and try to get the basic sense of what Mom is trying to say. Most often, I just pretend. From what I can tell, just feeling heard and loved is enough for her. I worry when she is sick or falls. I see the residents around her pass away and I grieve – both for them/their loved ones and in advance for Mom, knowing that one day it will be our turn.

Most weeks, I get a phone call from the Nursing Home. Each time I see the name on the display a little shudder goes through me: Did she fall? Is she hurt? Is she sick? Is she acting out? But fortunately, lately, it is fairly ordinary stuff that makes them call and I am thankful.

Next week is Mom’s 84th birthday and soon she’ll pass her two-year mark living at the Nursing Home. It amazes me that her life has improved in many ways from those dark days we first signed the papers and drove away in tears. We felt so desperate we never would have imagined that (despite the fading of her mind and memories) that Mom would live a contented existence for two more years …any perhaps many more to come.

Dementia is a crazy thing. It just hijacks your life and you have to keep going. And so we get up and we go again and thank God for today.

Comments
Login to post comments.
2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here's an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 6,800 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 11 years to get that many views.

Click here to see the complete report.

Comments
Login to post comments.
Ode to the Nursing Home

Ode to the Nursing Home

To be fair I haven’t read the book yet, but the quotes used to promote the book have already made me mad.

The book, written by Dr. Stephen L. Goldstein called When My Mother No Longer Knew My Name, sounds like it offers some great tips for helping caregiver cope. However, it seems to me to be peppered with something family members and caregivers don’t need – a whole lot of shaming.

Goldstein states, “It’s a national disgrace that so many families dump their elderly parents in nursing homes and assisted living facilities. We need to become a nation of family caregivers. Sons and daughters should invite their aging and aged mothers and dads to live with them.” The quote media uses to promote the book says, “Stop Dumping Parents In Nursing Homes!” While I believe his intentions are honourable, encouraging caregivers they do have the skills to care for their parents, these comments are completely and totally unfair.  “I would never let my mother live in a nursing home,” is something he says adamantly.

I take exception to his statements for several reasons. One is I used to feel the same way. When my mom decided to sell her house, we happily welcomed her into our home. We planned ahead for the day, bought a larger place and cleared out a large section so she’d have her own dedicated space with its own bathroom, entrance and exit to the backyard. Four days later, we admitted a delirium-driven, psychotic, frightened and demented woman to the hospital and she never moved back. I was heartbroken, guilt ridden, I believed I had broken my promise to care for my mother and committed the ultimate sin – placing her in a nursing home.

The fact is we were NOT equipped to meet all of my mother’s needs. We could not keep her from running outside, calmed and reassured every other hour all night (since she didn’t believe it was not day time –despite the darkness outside). We couldn’t convince her we were not trying to poison her and that Satan was not lurking behind everything. We could not do this and raise two teenagers – not even after I quit my job.

Once I got over my guilt, my shame and my anxiety about my mother living in a nursing home, I found to my surprise that she was quite content there. As her memory faded and she began living more moment to moment, she settled; she began enjoy the routine of the nursing home. She liked the regular meals, snack time, exercise activities, games and events. Singers came in and she began dancing again. She got haircuts and manicures and enjoyed the company of both the other residents and the staff. She is happier in many ways than she has been in years. I did not DUMP her anywhere.

I believe there are likely some poor nursing homes, but from what I’ve observed over the past year, there are some fantastic ones too. Mom lives close enough that I visit her often – all times of the day and night. She is usually doing something when I arrive like helping bake cookies, playing bingo or enjoying a Bible Study.

When I read the words of Goldstein, I think – how dare you? You don’t know me, my mother or our situation. Perhaps because I know people said the same thing about me. “What if I’d been more patient? What if I’d just tried harder? Then maybe she’d still be living with me?” Perhaps that is true. Perhaps she’d have found her way to the street while I slept, but no one knows. The point is – would she have been happier here? I don’t think so.

So take that caregiver guilt and shame and shake it off. The needs of your spouse, your parent and your needs do not match a formula –  Love your parent, your spouse and do your best and if that involves a nursing home – be thankful one exists to help you give them the care and support they need.

*P.S. Please note I did not post My Mother’s Caregiver Top Weekend Reading List last Friday. My Mom had two falls in less than a week and my schedule sort of got dumped on its head. Her falls demonstrate another example of my appreciation and support for my mother’s long term care facility. As the nursing home helped my Mom during this time the staff were so supportive and helpful. The day after her first fall, the doctor had already been in to see her by 6am. The physiotherapist had been arranged. In fact, if she hadn’t of been being cared for in the nursing home, she might still be in the hospital right now. Sorry Goldstein. Thanks everyone!


 
Comments
Login to post comments.
Weekend Reading Picks

 

My Mother’s Caregiver Weekend Reading Picks

Sorry everyone, I usually post these Friday, still – it’s good stuff. There are articles on caregiving, elder care abuse and something I haven’t shared yet, but should have, caregiving from the perspective of a family struggling with cancer. Take a look:

  • Here is a very informative paper called Baby Boomers Confront the Caregiving Challenge. One of the experts is a friend to My Mother’s Caregiver, Bart Mindszenthy. Take a look:

http://www.retirementhomes.com/library/the-retirementhomes-com-caregivers-summit-2/

  •  Two interesting articles about the elder abuse and the elder abuse hotline- which is in danger of closing due to loss of funding:

http://www.thestar.com/opinion/editorialopinion/article/1122095–ontario-elder-abuse-hotline-in-jeopardy

http://www.yorkregion.com/community/health/article/1284146–taking-advantage-elder-financial-abuse-on-the-rise

  • Good news for seniors. The Ontario government is making it easier for seniors aged 80 and over to renew their health cards from the comfort and privacy of their own homes.

http://www.tillsonburgnews.com/ArticleDisplay.aspx?e=3448862

  • Most of the links and resources given on My Mother’s Caregiver have been for elder care givers. However, any caring for a loved one needs support. This week I got a touching email from a man named Cameron who has been caring for his wife, Heather who has suffered with a cancer called, Mesothelioma. Thankfully, she is cancer-free. We thought their blog/story might be helpful to our readers. Pass it on to someone who needs it.

http://www.mesothelioma.com/blog/authors/heather/

Enjoy!

Comments
Login to post comments.
Knowledge is Power

Eight Signs of Alzheimer’s

January is Alzheimer Awareness Month. If you are a caregiver to an older parent, relative or spouse it is important to know what signs to look for.

Sadly, we often choose to look the other way when it comes to our loved ones developing Alzheimer’s and Dementia’s. Bart Mindszenthy, author of Parenting Your Parents, says that when it comes to issues like Alzheimer’s, parents are “in a state of denial” and their adult children or spouses are “in a state of avoidance”. These are difficult issues to face, but ignoring them just compound them. Knowledge will prepare you to face difficult times.

Do you know the Eight Signs of Alzheimer’s?

If there has been a change in the following areas, you may be dealing with Alzheimer’s or dementia.

  1. Memory Lapses. Do they often forget things, especially things learned recently? Are there repetitive questions and re-telling of stories, sometimes minutes of being mentioned?
  2. Confusion over words. Going blank when speaking occasionally is very normal. If it is increasing or becoming common place that should be a warning sign. Having difficulty saying the “right” word is also common. The word “hairdresser” might be used instead of “hairdryer”. This is very frustrating for the person trying to communicate.
  3. Marked Changes in Mood or Personality. If your normally out-going mother becomes withdrawn or assertive and suddenly has uncharacteristic fears, this could be a sign of Alzheimer’s. Marked mood swings and changes to sleep and appetite should be cause for concern.
  4. Trouble with Abstract Thinking. If your normally competent spouse is now struggling to pay the bills, follow discussions or instructions, see a doctor.
  5. Difficulty Completing Familiar Activities. This was the first thing we noticed with my mother-in-law. An accomplished cook and baker, we arrived for a visit to find she had only boiled carrots for the meal. She also had half- finished knitting projects and only seemed to half-clean her apartment.
  6. Disorientation. Getting disoriented in an area he knows well or getting lost and turned around more easily than normal while driving may be a sign of Alzheimer’s.  People also can lose track of time – not remembering the time of day, month or year.
  7. Misplacing items. Although many of us suffer with losing our keys, glasses or wallets, if there is an increase in this behaviour or things are being found in inappropriate places – be concerned. Finding a wallet in the freezer would be an obvious one. My mother developed this early on. She will “stash” stuff away in random places so no one takes it, only to forget where she put it. Taking it to the next level, then she will believe someone stole it.
  8. Poor or Impaired Judgement. If your loved one is making questionable- out of character – choices, have them assessed. Some of those things might be: poor money decisions, hoarding or purging, can’t seem to make a simple choice, not taking care of themselves properly, their dressing not matching or not weather appropriate and not being able to plan ahead.

The more we know the more prepared we are.

Comments
Login to post comments.
2011 in review
The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog. Here's an excerpt:
A San Francisco cable car holds 60 people. This blog was viewed about 1,500 times in 2011. If it were a cable car, it would take about 25 trips to carry that many people.
Click here to see the complete report.
Comments
Login to post comments.
 
Login
  Categories
  Archives