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Guide to In-Home Medical Care Options for Our Loved Ones Suffering from Alzheimer’s Disease and Dementias

This post discusses home health care, palliative care, and hospice care options. Included in the video below are descriptions of each of these options and recommendations and advice, from my personal experience as a loving caregiver for my mom, about each one.

To begin the video, simply click on the “Play” arrow and the video will play (there is no sound).

Please continue to give me feedback on topics you’d like to see discussed here. This is our blog and, while I’ve got content that I’ve prepared and am preparing, I would also like to address any topics, concerns, and questions you have about providing loving caregiving to our loved ones with Alzheimer’s Disease and dementias. 

Same Day-Different Name

Excellent post on the benefits of being a caregiver. I know I’m thankful for the opportunity I had to be Mama’s primary caregiver and I’m grateful for the time we had together. I learned a lot of valuable lessons and I learned a lot about myself in ways that would have been impossible in any other situation.

It was a gift from her to me, although neither of us realized it at the time. The day is coming when we’ll both be able to look back and I’ll be able to thank her. Soon I hope.

Ray Burow's avatarNavigating Alzheimer's Disease

“For everything there is a season.” From the book of Ecclesiastes, there is “…a time for every activity under heaven“. This is true, but for caregivers, time seems to stand still. Day after day, month after month, season after season nothing much changes. Our lives seem to drift slowly away, dissipating with the time we spend caring for those we love. The tasks are heavy and each twenty-four hours is, the same day with a different name. Our experience is similar to those of actor Bill Murray’s character in the movie, “Groundhog Day”?  Murray was doomed to live the same predictable day, over and over again until he got it right. He was stuck for days in the same town, doing the same thing day after, livelong day. It made for a humorous movie, but for caregivers of Alzheimer’s patients, perpetual, predictable days are the norm…

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Mama: March 2, 1929 – August 14, 2012

“Life and Death in Assisted Living” – PBS Frontline Documentary

I watched Life and Death in Assisted Living on PBS’s Frontline program earlier this week, and I highly recommend this for all family members with parents with dementia and Alzheimer’s Disease in assisted living facilities with “memory care” units or who are considering placing their loved ones in this kind of facility.

Let me say at the outset that they’re not all awful. However, let me also say that they will never take care of our loved ones as well as we can and would. I understand that some people, because of distance or a myriad of other reasons, believe they have no other option. If that’s the case, it is our responsibility to be (or designate a family member who is there to be) all over that facility and our loved ones 24/7.

Sadly, the mistreatment, the mistakes, the lack of care shown in this series are more likely to occur. Again, I’m not trying to make generalizations here, but I’ve seen some of this firsthand with people whose family members were absent most of the time or couldn’t be bothered even when serious matters arise.

These elderly people tend to get treated differently – worse – by some staff members when family and loved ones are not involved. My first-hand observation of this – and my Mom’s when she was an ombudsman at a facility in northeast Tennessee after my dad’s death – made me (and my mom) want to lower the hammer, rescue the elders, and shake some sense, compassion, and love into their families and loved ones.

We have a responsibility to our parents and our elderly folks to ensure that they have the best care possible as they end life. We cannot do that if we’re not involved day in and day out, even if we can’t care for them at home, with assisted living or nursing home care.

The more we are present – and I mean every day, different times of the day, for chunks of time each day – the less likely our loved ones and parents will suffer the mistakes, negligence, and deaths because of lack of care or failure to do the job that this series talks about.

Mom was in an assisted living facility with a memory care unit until I knew she was as stabilized mentally as she could be. It was not the first choice she and I had made, but the first choice turned out to be a “let’s-get-you-in-bind, put-the-screws-to-you, then-make-you-hand-every-bit-of-cash-you-(or-your-children)-have-over-to-us-up-front.”

And that’s not uncommon, based on what I’ve found in my research since then. I can’t think of too many times in my life when I’ve been angrier than I was when this materialized, but I discovered that this company was fairly representative of how assisted living and nursing home facilities, especially those that offer memory care, work.

As appalled as I was to discover this, I was even more appalled to discover that this is business as usual for most of these places. 

Fortunately, the place that I found for Mom wasn’t like this, but it had its own unique set of issues. The reality is that nobody else is ever going to, or in fact can, care for our parents and loved ones the way we will and are able to.

The bottom line for us is whether we’re willing (and able, because some people are not) to make the sacrifice to do for our parents and our loved ones what they were willing to do for us when we were babies, helpless, and completely dependent on them. 

assisted living memory care dementia Alzheimer's diseaseFor the last several weeks she was her assisted living facility, I was living there because she’d fallen and had a bad ankle sprain and I needed to be there. Within a short time,we made the decision that she would move back in with me and we’d be together at home until the end.

And I’m grateful we had that time together, although I know at times it was hard for my mom and at times it was hard for me. In the end, that didn’t matter, because I knew…and Mom knew…that we were both doing the best we could and there was unconditional love and care behind that.

“Don’t Stop Asking About My Mom” – Poignant Dementia/Alzheimer’s Disease Post

Poignant post from a daughter who’s mom is suffering from dementia/Azheimer’s Disease: http://mydementedmom.com/2013/07/30/dont-stop-asking-about-my-mom/

I identified with this post in a way that I can’t really put into words, but I know two things specifically echoed my own experiences.

One was how our loved ones seem to become invisible as they lose their ability to recognize, communicate, and respond in tangible ways with most people. Touch, as the author points out, is huge. Hugs, kisses, putting my arms around her shoulders, and holding her hands a lot were how my mom and I stayed connected, more so after the dementias and Alzheimer’s Disease, than before.

And the other is one that has long been a principle for me. Quantity (of life) doesn’t matter if there is no quality. It’s why I’ve had a no-extraordinatry-measures living will and DNR since I was in my early 20’s and why Mama did the same for herself after Daddy died.

Medicine can give us time, but it will never be able to give you the intangibles of “good,” “healthy,” “sound,” or “well.”

And, without those, time is useless.

New Facebook Group for Caregivers

I’ve created the Caregivers – Alzheimer’s Disease, Dementia, and Other Age-Related Illnesses Facebook group. The group offers practical and informative support for caregivers of loved ones suffering from Alzheimer’s Disease, dementia, and other age-related illnesses. Please feel free to ask questions and seek support and we will be happy to help. If we don’t know the answer, we will do our best to find resources to help you.

It’s an open group, so anyone can join. Please consider joining and spreading the word so others know this resource is available.

You are not alone.

“Fields of Gold: A Love Story” Published and Available for Purchase

My memoir about my parents – who were both orphaned at very young ages – and their life together, which included adopting my sisters and me, and then Mama’s journey to the end last August, Fields of Gold: A Love Story, has been published and is now available for purchase.

Watch the publication announcement video to put some faces with the posts I write here, including that of my beautiful Mama.

I wrote this memoir in about six weeks just after Mama died, first to preserve our family stories for my sisters and me and her grandchildren, but then it evolved into a full-length book that chronicled our lives from beginning to end – at least for my parents – and I hope will live on as a tribute to their legacy and a reminder to each of us of the legacy we are now responsible for carrying on and passing on to the next generations.