Should we get more or less sleep?

I’ve had a different day today. Felt anxious, bored (unusual for me), antsy and a little bummed. A little lazy. Not sure why. Maybe just a combination of factors. I don’t have the energy to write this blog consistent with my other obsessive compulsive blogs.

I see that Agatha Christie had undiagnosed Alzheimer’s disease. I read an article where linguists did intense studies of her writings over the years and noticed that her vocabulary gradually decreased and she began to use more generic words such as them, those, things, etc.

Just logged off a website which now says that too much sleep can be a factor in the cause of dementia. And all these years, we’ve been told that most of us are sleep deprived and that we should get more sleep. What do you all think?

A very good friend of ours called me today from Pittsburgh. Her husband has AD and is quickly declining. It turns out we both have the same neurologist. We mainly talked about how she needs to care for herself and to get nurtured by other caregivers which she is doing. But the sad thing for me is that her hubby has been a sharp and smart guy. An engineer by training. Makes me feel sad.

As I sit here typing, I feel like I am tired of researching and reading about dementia. What I read seems to either discourage me or make me feel more frightened inside. Lately, I obsess about LBD, its course, its progression in other and in me. The slow subtle changes which only I notice internally. Using less vocabulary words since it’s hard to find the right word. Making up some words and adjectives. I guess that’s good. I can still improvise and cover up my slow downhill changes. I just read another article from the Mayo Clinic today which says the average life span after the onset of LBD is about 8 years. I have read 7 from other sources. Yes, I know everyone is different and that the new drugs are helpful. It’s been about 4 years or so for me since the onset of my symptoms. I am trying to remain positive and tell myself that statistics are just that. Statistics. Not the Golden Rule.

I just wish that everyone with any type of dementia could be able to share their feelings. Of course, that isn’t possible. It would help others. And it would help caregivers understand more of the thoughts and feelings which go through our minds.

I’m not asking for nice comments and encouraging words. Just a piece of my heart today.

Interesting. As I’m typing Robin just posted a comment saying, “My mother has had alzheimers for 17 years. The doctor has recommended we stop feeding her. He said the alternative will be she will asperate and get pnemonia. My question is which will be less painful for my mother. Dying from pnemonia or dying from withholding food and fluid.”

OK. That made me realize I need to stop the self pity right now.

Robin…………..I haven’t a clue as to how to answer that. It’s a heavy question and I don’t envy you. One of those bioethical dilemmas which people dabate about constantly. But I will pray for both you and your Mom.

Would the rest of you please jump in and share your thoughts with her. I think she’d appreciate it very much.

 

Warmly……….David

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8 Responses

  1. An unimaginably difficult situation to find yourself in Robin. Like David, I’m praying.

    If she didn’t have dementia, would there be any question – would the thought of euthenasia even come up?

    Putting myself in your mother’s place, I’d say let God’s hand be the deciding factor, not a decision to withhold food and water. Your mother will presumably receive adequate treatment for pneumonia, as every patient is entitled to. If she pulls through, then it isn’t her time to go Home. If she doesn’t, then it is her time.

    In many ways it’s harder for relatives than for their loved ones. But I would no more take another’s life into my own hands than I would my own.

    Much praying for you,Robin.

    Louise

  2. David, I have always read that the 7 years if from diagnoses not onset. My Mother made it 4 years from diagnoses, but she hid it many years. I think her earliest symptoms occurred about 13 years before her death.

    For Robin, I would suggest that food be offered to her Mother and if she wishes to eat then let her eat. If she doesn’t want to eat then don’t push it. At this point her Mother has very little control over anything, so I would let her have control over this. Who knows if she will aspirate and get pneumonia or not. My Mother didn’t, but she did quit eating just a few days before dying. My Mother had LBD which I believe is worse about aspiration.

  3. Dear David,
    I am a Wife/ Caregiver/”Caretakee” to my Beloved Husband w/ early onset PD, LBD (was mild cognitive impairment). “Caretakee” because since ±35 (we’re in our 50’s) I’ve “suffered” from a genetic immune deficiency, and, since age 45, almost annually have been dx’d w/ yet another autoimmune disease, or required some major medical intervention (that less often). My Husband was the only caretaker, other than my being as active as possible a Mother, until “empty nest” time, early 2000’s. I first noticed PD tremors in Husband in late 90’s
    (quite mild still, at least outwardly, as I saw “full blown PD in my Paternal GF, then a “sad, but typical” death after UTI, poor catheter care, almost immediately upon placement in a nursing home), and (back to my Husband) I noticed the cognitive/psychological (personality) changes began 2003ish.Dx was in 2005, Mayo, Dr. Boeve, (he also had been dx’d w/ major sleep apnea/ uses CPAP), and hence the change to mutual Caretaker rolls. I was no picnic in the sympathy/ empathy area when I thought he just didn’t love me, then his truly beloved *Profession* in which he was (is still seen, though just part/ part time now) nationally “revered,” and many times over, published.
    (Should “misery love company,” a not so great wording for a well meant sentiment), he now struggles with updates, deadlines, from sheer fatigue alone, along w/ the Lewy “bag of symptoms.” Which brings me to Point #2:
    He found you on LBDA, I’ve subscribed, I forward to him, he prints. We *THANK* you.(That was Point #1)
    I would have been far more active on a blog, a site, were it not for my “Perfectionist”
    tendencies and fatigue and Life, and these are tendencies which my Husband had/ has in certain ways.
    What is the phrase? Perfection is the Enemy of Progress?
    I now wish *so much* that we both had “blogged, journaled” more. So PLEASE, if/ when the spirit moves you, Write.
    Being tired, just whatever your reasons, you undoubtedly have helped so many of us. As my Husband says about all writings, (I *hope* your writings will (are?) a book or two!) Publish!
    And be kind to yourself, AND:
    Point #3, at 12, my Mother refusing me a spinal fusion w/ a world renowned Orthopedic Surgeon, due to quickly progressing scoliosis, (now inoperable due to all my other conditions, said MD, in front of me twice predicted my sure demise at age 40, of “heart and lungs” “crushed together.” by my (and it IS!) continually worsening curves. I did get Body Cast and Years of being the “brace girl,” one reason I believe I handle dx’s as less a shock. It’s not like moving along, then being slapped w/ LBD, worse, LBD, AD, all of these diseases, at an early age. Acceptance of my own illnesses is blind and fast in me; but as w/ all of you, when my Husband was dx’d, I experienced the “Grieving” process (am still in it) like a “normal” individual.
    To statistics, predictions! Studies, I say “Phooey.”
    Yes, I’ve for no other reasons than my horribly 3, now 4 curves Spine, had a sub acute heart attack, congestive heart failure and pleural effusion (temporary, inability to handle jugs of IVIG), 1,2,3 now bad valves, and a tiny left lung, scarred by chronic lung infections, blah, blah. But Proactive, Preventative, CAM medicine, etc., thrown in w/ being a part Scotch-Irish stubborn Jewish girl/woman, *I* believe I will prove over and over this MD WRONG. Selfishly, I want to be with my Husband, atone for my years (and still sometimes) lack of understanding. We love our Blessing of living to see a Grandchild, truly our greatest medicine aside from the (sometimes?! Joke!) Blessings of our Adult Children, and a Spouse to one of them, like another of our own. They are truly mean about even understanding, acknowledging our limitations, but then we all know Youth carries w/ it *great wisdom*! (Not!)
    In any case, Fight, in your peaceful manner, ignore statistics. Please. We need you, but You need You, as do your own, the most.
    As for dearest Robin’s dilemma (sp.? She gives effusively in knowledge, support, and we are indebted to her as well), first, thanks for the “head’s up.” Will get to the Board.
    BUT, having once been a Hospice volunteer (the greatest training, group w/ which I’ve ever been associated, and moreso, w/ a Father who died w/in 24 hours of contracting Aspiration Pneumonia while trying to get his “predicted” remaining months (all due to nurses, in ’82, in all their greatest wisdom, who decided to ignore his repeated buzzes for help after vomitting, in a helpless supine position. Thanks. Our first Child was born 12 days earlier, same hospital, after my weeks of doing his “intake, output” etc. charts, just spending the last most precious moments I had w/ him. He might have seen more than his “special permission” window nursery view. He might have, would have seen her first “gas” smiles. Had they but answered his calls to be put upright. Or maybe not.
    (You can see I’m in this Caretaker/ Caretakee Love Story for the long haul, w/ all the personal attacks, hurt that LBD, lack of a Gatekeeper will NOT scare me away. And he *is* ill. We joke about who will beat whom.) I digress for fear of giving an opinion.
    The first priority, a very brilliant woman like Robin knows, would be her Mother’s stated or recorded wishes. But between watching my Father unable to eat through chemo, and his quick aspiration pneumonia death, I would choose quick. But I/ We are not God, yet we’re asked in these roles to “play” just that to an extent.
    I/We too will pray for Robin and her Mother. We will get to the Board.

    Best Wishes and many apologies for my “long-winded” self/Husband introduction and comments, Liz
    P.S. After a 3 week bout of a flu like virus, my Addison’s Disease, w/ increased steroids has awakened me far too much.
    And on that note: SLEEP: My Professional, never a sick day in almost three decades Husband, prior to LBD, never slept it seemed. Without sleep now, the world, his and therefore mine, is not a pretty place. “Eight hours, Eight HOURS!” is his “battle cry.”
    So I think I’ve over answered and expressed myself here.
    Peace and good sleep to You, to All

  4. Dear David,

    I hear you loud and clear about being tired of reading about Dementia. I become that way by just being on the LBD Caregiver List.

    At the beginning of my husband’s LBD I researched as you have been doing. It got to me. I pulled myself away from that type of thing, and said, “Let’s go outside,” to my husband.

    The next day I asked if he would like to take a day trip. He liked that just fine. Kicked a few rocks and let the breeze blow through our hair, and blow the cobwebs out of our brains.

    I decided we needed to LIVE while we could.

    Another day we played scavengers in thrift stores. I found a beautiful set of crystal stemware as you will ever see.It had such a beautiful tone when bumped together. I was thrilled. I don’t remember what goodie he found, but he enjoyed the hunt.

    What I am saying, is that we decided to have fun. I have seen that you have been working in the yard, but change it up a bit. Do something totally different. Be spontaneous.

    I know that my husband has had LBD since 1995. How do I know? He worked with heavy math in his job, and could no longer do it, and had to leave his work. His disease has been progressing very slowly.

    True, he is in a nursing home, but that is because I could no longer care for him. But, I live a half mile away, and see him nearly every day. We have lunch together. He can still walk, and can express himself once in a while. Most of the time he does have scrambled sentences that can’t be understood, but I listen and in doing so we are sharing love.

    David, do not worry about the years you have. Live the moments you do have. Each moment add up to a great deal of happiness. How much time do I have left? Live it! This lady that is older than dirt has spoken.(smile)

    As for Robin. How would you want to be treated? Personally I would not make her starve. Let the patient be the one to say when. Prop her up with pillows so that nothing is hurting, and continue to feed her as long as she wants to eat, but neither would I subject her to feeding tubes. She’ll quit eating when she is ready. What are the patients wishes? She didn’t express them? All right, so back to the original question, How would you want to be treated?

    Dear David, I keenly appreciate your Blog, but please don’t be tied to something you feel you have to do. Write when you want to but, don’t make a job out of it. Relax and ask your beloved Pam to join you in fun.

    Love a lot,
    Imogene

  5. no words of wisdom, just letting you know that whatever you can share is helpful, always, to some one, now, or in the future. there are not many folks living with dementia who are able to articulate so clearly what the day to day experience is like. thanks.

  6. Hello David,

    There’s not much I can say because I have no idea what it must feel like. With Dad, he knows that he has a memory problem but I think a lot of what the dr’s say, goes over his head. You have been like a window for me, giving me some idea to how he feels…seems quite selfish, in that I can’t in return give you some words of wisdom. I just know that with Dad, a happy day is the best day. So, I wish you lot of happy days.

    And for Robin, my heart goes out to you. I have thought about your situation wondering what I would do if I was you. It would depend totally on, if the end was near. If the dr’s said ‘only a week or 2 left’ then I would avoid the aspiration/pneumonia. I make this decision based on what I saw my mother go through, who passed away in 2007 with COPD, Chronic Obstructive Pulmonary Disaease. Watching her having to be suctioned, so she could breathe, constantly, day and night was traumatic. The alternative, to allow the person to pass, painlessly with help from medication. With Mum, in the end it was her who told them, ‘enough and to stop all treatment’. I did not have to make the final decision. I had already made 2 decisions to intubate. I know this is only one example, and every situation is unique with differing circumstances. So, Robin gather as much information about each choice. Would the aspiration/pneumonia result in having the lungs to be suctioned? I do have a very biased view about this procedure and it is only the family, armed with as much info, knowing the person and the circumstances who can make the decision. As I said my heart goes out to you during these sad, sad days.

  7. Hey David, I’m always just happy to get updates on you and Pam. I pray for you guys daily and I just hope you are loving it out there!
    Rebecca Detrick

    • Thanks Rebecca……….we sure do appreciate it. And we miss you in Davis, CA! What fond memories and fun we had coming to the shop!

      David

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