Tag Archives: Alzheimer’s

Glen Campbell’s Alzheimer’s song: I’m Not Gonna Miss You

As a caregiver of a family member with Alzheimer’s disease, when I heard this song by Glen Campbell it really moved me. (Well, okay, I cried a little.) This talented singer songwriter has had the terrible disease for several years and is in the last stage of it now. While he was still able to function well enough he wrote and recorded this ballad called I’m Not Gonna Miss You.  It could be considered funny, but – if you really listen to the words – the irony of it is so real, so painful. Glen Campbell expressed in the words of his song something most people may not even consider about Alzheimer’s – that it does not just make one’s brain forget, it destroys the brain so that memories are completely removed as if they never existed in the first place, as if there’s nothing to remember. The patient eventually gets to the place where there is no loss, there is simply a ‘not knowing,’ of anything.

I want you to hear this beautiful ballad. Please listen and tell me what your thoughts are about it. I hope you can take the time to play it a couple of times.   I’m Not Gonna Miss You – by Glen Campbell

Thanks for reading, and … Creative Musings!  :)

 

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Important info about Alzheimer’s research! My rant

I’m on a rant! Please indulge me.

As you know, Alzheimer’s disease (one high-profile aspect of dementia) has invaded my family and taken over a major part of my life. Today I have very important information to share with you.

Before you read further, I would like it if you would take this Alzheimer’s quizRight click on the link so you don’t lose your place here.

Much research is being conducted to learn how to prevent, slow, predict Alzheimer’s disease, but study of the actual brain of Alzheimer’s patients cannot be done until after death. I recently learned that the main focus of study is of the male brain because it is easier to work with due to the female brain being more complicated due to hormonal changes and differences. This means that drugs formulated to help Alzheimer’s patients are geared more to the male brain! This is shocking since more women are afflicted by Alzheimer’s disease than are men! Now, does that make sense to you?

I don’t know about you, but that does not sit well with me. Alzheimer’s is following the generations in my family and I for one do not want to have to rely on ill-targeted studies and drugs should it come to that for myself or any other woman in my family.

There are not many causes I believe in enough to commit to support, but Alzheimer’s research is one in which definite strides are being made and support is not misused. In fact, Nova Scotia is a leading force in research and progressive work in learning about this disease. I’m proud of that fact. I also see the huge and urgent need of continued research for breakthroughs. I truly believe that for the generation of my own offspring there will be discoveries made to determine very early if an individual has the actual disease and then stop it from progressing further, thus saving the individual from the horrible regression due to a deteriorating brain. Although now there is a blood test that can reveal if a person has the gene, at present the drugs we have, at best, sometimes slow the progression but cannot stop it. 

I wish I were a scientific genius who could come up with the answers to save so many lives from the agonies of Alzheimer’s disease. There is so very much we don’t know about it … what causes it, what triggers it to start, how to stop it, how to prevent it, how to cure it. There are guesses, lots of those, and there are studies which have found diet has a lot to do with trying to fend it off – foods that make a positive difference for the brain (coconut oil being emphasized now) – but when one is in a family stalked and oppressed by Alzheimer’s that is not enough.  Answers, helps, a cure, PLEASE!

I found a website I would like you to visit. It is called Hope Knot. The name comes from the Hope-Knot project – to combat women’s brain aging disorders. A beautiful design was created by a renowned jewellery designer whose family has experienced the devastating effects of dementia. He explains the inspiration for the design, which I hope you will go HERE to check out for yourself.  Here is what is said on the site: The Women’s Brain Health Initiative wanted an icon to raise awareness and escalate concern over the unchecked growth of dementia and other aging brain diseases in women.

Here is additional good information about Alzheimer’s.

There is more I could say but for now I will simply thank you for permitting me this rant. You can see it is a cause I believe in. I urge you to please visit the website, and if so inclined, make a purchase of that beautiful jewellery to support the effort and honour the many women afflicted – or who will be afflicted – with brain disease. I did.

If you took the Alzheimer’s quiz what were your results? I missed one.

There is talk of a blood test now that will reveal if someone has the Alzheimer’s gene. If given the chance, would you want to know ahead or would you prefer to wait (if you have it) until it is obvious? If you knew ahead, would it change your life?

Thanks for reading, and … Creative Musings!  :)

PS:  From the Hope-Knot website:  Almost 70% of new Alzheimer’s sufferers will be women. What makes this fact even more alarming is that there is little understanding of why this is the case, and there are no studies currently being undertaken to explore the discrepancy. We at the Women’s Brain Health Initiative intend to change that.

 

 

Book Review: Adventures in Mother-Sitting – by Doreen Cox

Adventures in Mother-Sitting by Doreen CoxBook: Adventures in Mother Sitting
Author: Doreen Cox
Publisher: Olmstead Publishing
Date: January 1, 2010
Genre: Memoir (adult reading)
Pages: 266
Price: $18.00; Kindle under $6.00
My Rating:  A good book for anyone caring for a loved one with dementia

* from the book blurb: ADVENTURES IN MOTHER-SITTING is a memoir that speaks to a journey through grief, through losses of many kinds.

I read this book with the intention of reviewing it, especially since I also am a caregiver of a loved one.

Adventures in Mother Sitting is a book written by the daughter of a woman with Alzheimer’s disease. Doreen Cox wrote from raw and real emotions and experiences. She took the reader through her journey, preserved in journals, in a way that draws the reader into her life, and into her home which she shared with her mother for whom she became a “care bear”.

Three things that stood out to me in a less positive way are:  1. I have never read anything where the author used quotation marks as freely as in this book.  2. It felt as if chapters 11 and 12 yanked me right out of the story and were not necessary.  3. Some repetition seemed unneeded as the reader can understand what was said and will likely remember most of it from before when encountering things that relate back.

Now, that out of the way, the great things about this book are the honesty with which the author wrote and her willingness to share it all. She told in great detail, some parts difficult to read because of the exposed reality of the disease, about how Alzheimer’s (dementia) steals from its victim. Not only are memories stolen, but the memory of how to do even the simplest things disappears. The brain is confused and damaged by the disease, affected in such a way so as to make it stop relaying the usual messages we all take for granted, such as how to eat, dress, carry on a conversation. There is so much to learn about Alzheimer’s, so much to understand in caring for someone afflicted. Doreen opens a window into seeing what it is like living with that horrible disease, and how acutely needed are love, compassion, patience, understanding.  She also bravely shared how it sometimes became too much for her when she was sleep deprived and exhausted, and how she coped – or failed to cope – with the demands on her.

Adventures in Mother Sitting is told with humour, love, and tenderness, but also with a sometimes shocking truth. It is raw, revealing, and perhaps awkward for some people to read, but it should be read anyway.

Two years ago I wrote a review of Still Alice  – a fiction novel about a woman who learned she had Alzheimer’s, and covers two years of her life as the disease gradually takes over her brain’s ability to function. It is a book highly recommended among caregivers of Alzheimer’s patients, and during our Alzheimer Caregiver Support Group meeting this month I recommended Adventures in Mother Sitting by Doreen Cox.

If you are facing dementia in any way, particularly as a caregiver of someone so afflicted, I suggest you read this book. It will help you to understand more from the viewpoint of the caregiver, enabling you to see from the author’s experience how the disease changes a person’s abilities and mind to that of total dependence.

You can find Adventures in Mother Sitting listed on my BUY THE BOOK! page.

Thanks for reading, and … Creative Musings!  :)

 

 

A B C’s: Alzheimer’s, Blogging, Cancer?

I have been missing in action again. Well, not really missing, but absent from blogging. It was not intentional. I just need sleep, I think.

Since NaNoWriMo ended I have been trying to do a little catch up on other things. This is my week home from caregiving (Alzheimer’s) and even though I have had some time, I’m finding it hard to accomplish much extra. My blogging has suffered (again!), and for that I apologize to you, my readers.  My stress level is climbing and I’m quite tired, but Christmas is coming and I have to get busy!

2160578-tired-santa-claus

The added stress is that recently my dear husband was diagnosed with level 2 melanoma, skin cancer. (I had to pause before typing out that hated word.) My husband told me he doesn’t care if I talk about it here; he says many people know anyway, and it is what it is and will likely become obvious. I am sharing this information in the hope that Believers will pray for him. He has had one minor surgery, and on December 18 he will be undergoing a more involved one. After that one and before doing reconstructive surgery the surgeon will be searching for lymph nodes in order to remove some for testing. This all will happen within six hours on the same day. Test results are to come back four weeks later.

That happens to be my week at Dad’s, so I am working out details to have someone there in my place while I am with my husband for two days. Once he is doing okay then I’m back to Dad’s for the rest of the week. Plus, it’s going to be crazy trying to get everything ready for Christmas during all this. We have been attempting to get our shopping completed in preparation, and I got my ‘away’ gifts all mailed yesterday.

A fun thing for me is that on Saturday I met a new author who is a bit of a celebrity. She signed her book for me and after I finish reading it I will be doing a review here .. after the others I have lined up.

** If I told you I would read and review your book, please send me a quick email and remind me. I must have misplaced my list (can’t imagine how!) and really have to get a better system together. I hope you understand it’s been difficult to get into reading and reviewing lately. There are some exciting books lined up for me to review, though, and a couple of giveaways are included. Please stay tuned! :)

I cannot end this post without saying that in the long line of people waiting for the signing of books on Saturday, three people behind me was none other than the lovely and talented author Laura Best! Remember my review of her book Bitter, Sweet and our interview? We had a chance to chat a little which was enjoyable for me, with comedy added since her husband was her “professional photographer” and quite a kidder.

I suppose most of this reads like a “woe is me” post. Admittedly, I’m feeling rather blue right now, but after a good sleep things should look a little better. Truly, I rely on the Lord although it may not seem like it right now. My human nature is to look at the situation and then have to remind myself to look to the One who knows all. One of my life verses is Romans 2:28: And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

I hope you are not stressing, but if you find life to be overwhelming … look to the One who knows all. :)

Thanks for reading, and … Creative Musings!  :)

 

 

 

 

When is a writer not a writer? (pity party alert)

My apologies right off the top for a dreary post.

My question is: When is a writer not a writer?  No, this is not a riddle. Then maybe again it is … but I have no real answer for it. Maybe you do?

I’m tired. No, let me say that again … I’m so tired.

And I don’t feel particularly creative. My well is low – on motivation, energy, inspiration, ideas, stamina. Maybe it’s because I’m tired. And a little discouraged. And feeling a bit forgotten. Now, is that a great menu for a pity party, or what!

My creative well is rather plugged up with stuff, such as – lack of quality sleep (aware all the time while “on duty”, then at home it’s hard to relax from that), caregiving concerns (situation is getting more involved as Alzheimer’s gets worse), always trying to balance two households (but not knowing enough about my own anymore)

physical pain (more since I had a fall a week ago, so add to the list an x-ray tomorrow AM), seeming to be invisible when it comes to the fellowship I was part of (probably “out of sight out of mind” because I seldom get there now), not having much interaction with writers (really need an ‘anytime chat’ place), needing a vacation (every second week at my own home is not a vacation), missing the ocean (my healing place), I have books to read and reviews to write (love doing both, time is a factor), I’m WAY behind in my emails and blog (many other demands and concerns),

and –

I hate that I sound like such a whiner!

Of course, my sister also has her own set of life stuff going on along with our caregiving commitment. It’s always interesting!

Okay, I need a hug. Where is my grandson when I need him?

There must be an up side to all this. Yes, of course there is.

  • 1. Our loved one gets to stay in his own home for as long as we can help him.
  • 2. We get the privilege of honouring him through giving of our time for him.
  • 3. My sister and I are learning as we go while also learning to work together to make a stressful situation workable.
  • 4.  We have fibre optics here! ;)
  • 5. …  hmm     5. … ?

I’m sure there’s more to add but right now I can’t think of it. (Was that you I heard say, “Good!”) This has been a writing exercise for me if nothing else, and hopefully my next post will be more upbeat after the tropical storm and hurricane pass tonight and tomorrow.

By the way, I don’t believe it’s writer’s block that’s got me in this place, it’s weariness and life stuff. Otherwise I could take some tips from my own Writer’s Helps page. :)

In the meantime, can you answer my question? When is a writer not a writer? What do you do when you not only can’t come up with ideas but you hardly are interested in trying?

Thanks for reading, and … Creative Musings!  :)

 

When Sorrow Weighs You Down (warning: deals with death)

Warning: this is a sad post and deals with death. It is not the post I had in mind for today.

Please .. no more bad, sad news. Enough.

It seems every time someone calls with news this year it is sad.

Actually it started in November of last year when a wonderful friend, Linda, passed away quietly in her sleep. She was in a nursing home for the care needed because of her illnesses. She was only 60.

On the very first day of January this year, Cynthia, an elderly friend, passed away. She had Alzheimer’s, was in hospital after suffering a broken hip, and did not recover. Added to her husband’s pain, near the end of that month, their son James contracted Meningitis. All efforts failed to save him and he passed away in hospital.

News of two other deaths came this week. The husband of an acquaintance was found, having died suddenly, the cause yet to be determined. Then on February 1, the best friend of the boyfriend of one of my daughters came home and found his young wife had passed away unexpectedly due to a medical problem. He is left to raise their two small children.

All of those are so heart-wrenching, but what has personally hit me the hardest is the news I received this morning. Ruby, a long-time friend and my husband’s cousin, passed away this morning. She was a cancer survivor but the treatments seven years ago seriously damaged her heart so when more cancer was discovered in December there was nothing that could safely be done for her this time. She chose to not try it. Hardly out of her fifties, her spirit departed this life and her loved ones a few hours ago.

My heart is heavy. I have cried many tears, grief sweeps over me in waves. But even though I sorrow it is not without hope. I am reminded of the Scripture verse 1 Thessalonians 4:13 that says in part, “that you may not grieve as others do who have no hope.” I know for a fact that three I mentioned above knew the Lord Jesus, the others I cannot say for sure. But families and friends can find their comfort in the Lord, and will carry on – even with heavy hearts.

If you are a Believer I know your prayers would be appreciated for the spouses, families, and friends of the ones I mentioned – for comfort and strength. It’s a rough beginning to this year and a long road ahead.

If you yourself are facing difficulties .. be encouraged. There is One who knows and is ever-present and waiting to walk through them with you.

Life changes, brings circumstances that sometimes we wish we never had to face, but life still goes on. It is our choice what to do with the short time we have.

On the flip side there are exciting surprises and situations that come into our life path, things that make us dance or sing or jump up and down. And, I have found, that even when death comes .. for the one who has hope there is reason to rejoice.

Do you have any experiences that you would like to tell us of God’s comfort?

If you know of any books for children on this topic of death, mourning, grief, please let me know by leaving a comment. Thank you.

Thanks for reading, and … Creative Musings! :)

 

 

 

 

Learning how to split in half and still keep one’s sanity

Wow! Time is certainly travelling along, isn’t it? It has been too long since my last post, so I will try to remedy that.

My life has been split in half. So has my sister’s. Therefore, so have our husbands’ and all else connected to our private existence.

Life has changed a lot, being a full-time part-time caregiver has affected my life drastically. With my sister, I am alternating weeks living with our dad (which makes it part-time), but we are going to be doing this for … who knows how long? (which makes it full-time) Even when I’m not on my ‘shift’ I’m still sort of on-call – if my sister phones and needs support or information or whatever. She does the same for me. That’s how we have it set up for each other and so far it is working out.

Recently, we were approved for a few hours respite each week, which is a blessing. A huge blessing. We were getting very weary, it’s a mental thing — always having to be alert to where, what, when — so getting a break is an assist to retaining sanity. Respite is so new to us that it is taking a little time to work out the glitches, and I find it hard turning things over to someone else even for a few hours. But, don’t get me wrong, I appreciate it and need it.

Can anyone relate to any of what I’m sharing?

When I get home from my week on duty, I lose at least one day from total weariness. Being on constant alert mode is exhausting, and even feeling tired there it really hits when getting home and being able to let my guard down. whew! I don’t know how people do this for years, and not being able to alternate weeks. Perhaps it’s a little different having one’s own home to maintain as well, but either way … it is taxing. Even so, it is an honour and a blessing to be able to do this for one’s loved one, regardless of the difficulty as conditions worsen. Further to that, it’s not really understood that there is even a problem. Challenging.

So, how do we do it? To be honest, The Lord is our Strength. Prayer, talking to other people who understand, getting those little blocks of time out of the house or just being able to read or work at a hobby while a nap is happening .. usually not our own :) .. all are very important in order to keep one’s sanity. Another top thing is that our families are understanding and very supportive in this. I doubt that we could do it otherwise. So, really .. the wheel that turns it all is LOVE.

I originally set up this blog to track my journey in writing. Why do my journeys seem to always have side roads? Do the sidetracks add to the well from which stories come? I’m hoping so. The novel I got well underway in 2010′s NaNoWriMo (refer to http://lynnadavidson.wordpress.com/nanowrimo-updates-2010/) has not been altered one bit since. Do I try to work more on it in NaNo 2011? I really want to finish it instead of starting something new yet. My hesitation is because I fear attempting NaNo this year would set me up for an incomplete. But gosh! If I keep putting it off I could be years .. or never! ..getting back to it.

How do people write, sometimes their best work, during times of stress?

It seems I still have much to learn about splitting my life in half while keeping hold of some measure of my established interests — and sanity.

Do you have a similar story to tell? How did or do you manage it?

Thanks for reading, and … Creative Musings!  :)