THANKSGIVING THROUGH THE YEARS
November 29, 2013 – Thanksgiving hasn’t always been marked with Alzheimer’s although we’ve certainly had our share with both families. Actually Ken and I have had a lifetime of wonderfully memorable holidays filled often to overflowing with family and friends. I always made sure we divided the November celebration of that first meal in the 1620s with Pilgrims and Indians between both of our families. At times we shared the dinner at the home of friends that we loved just as if they were family; filled to the brim with the same feelings of care and love, it would be difficult to distinguish the fine line between family and friends. That kind of love just enlarges the circle. But most holidays were spent equally between Ken’s parents and my parents, we alternated every other year making sure no one ever felt left out. Continue reading
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An Alzehimer’s Siblings Act
November 22, 2013 –If I didn’t know better, or if it were possible, I would bet the farm that Ken and his sister Loretta were identical twins, but being male and female, and two years apart, we all know that’s an impossibility. Nevertheless they are like two peas in a pod. So alike, and when they were younger with no inkling of Alzheimer’s, it was almost as if they were reading from a script. The similarity continues because now they are both deep into Alzheimer’s. Being the older of the two, Loretta began her sad journey about two years before Ken was diagnosed. One difference between them is that in her 70s Loretta had a hemorrhage type stroke or a brain bleed. We often wondered if the stroke had anything to do with the happening that occurred in her mid 60′s. Continue reading
MAILBOX FULL, BUT LITTLE KINDNESS
November 8, 2012 — There seems to be a commonality with emails and the mailbox attached to my house holding mail delivered by The United States Post Office. Lots of junk on the internet and even more, at times, in my home mail box, but few letters, few kind thoughts. It may not be junk exactly, but it can be filled with lots of stuff that I didn’t order and stuff I don’t want such as greeting cards to solicit funds for good causes, and next year’s calendars. Time zips by quickly enough without next year’s calendar rushing another year away.
So it was to my dismay when I found Discover Card had sent me: my own personal business credit card. Several years ago I made an effort to cancel the business card Ken had taken out in his name. The powers that be informed me that I couldn’t cancel Ken’s card because I wasn’t the one who had requested it to begin with. So I just put it in a drawer and decided not to use it even though our rentals constitute a business, and it is prudent to keep business expenses separate from person purchases. Needless to say I didn’t need another card in my name. Continue reading
GRANDSON BRIAN AND MY HAUNTED HOUSE.
October 31, 2013 — Last year I related an experience Ken and I had with our grandson Brian, and our haunted house. He was at least 23 years old at the time. We had asked him to house-sit and care for our dog while we were away for a week and it was still summer with no ghosts in sight. But after the first night the dog was on his own because Brian insisted our house was haunted. After listening to the roof creak and hearing strange movement sounds and spooky noises in the shed he was certain he was staying in a truly haunted house.
COULD WE HAVE HAD AN ILL WIND BLOWING?
Recently I wondered if he might be right. He should have been here last week when we had winds from the north-east and this one really did strange things. My bedroom window was open. The air actually felt good coming into the room until I heard a crash which made me bolt up in bed crying out in my my deepest Ken voice, “What’s going on over there?” I am sure the occurrence would have shattered Brian. As the wind blew through the open window it also blew at the closed mini blinds. With each gust the wind pushed the loose blind into whatever was in front of it. That’s when I heard the crash. Little by little the glass lamp which had been on the desk moved closer and closer to the edge until finally with one last gust the blind pushed the lamp onto the bare floor. Yes! The crash sound spooked me out as well as it would have spooked Brian, but he would have claimed ghosts had done it. Back east when they have a nor-easterly it means being barraged by tons and tons of snow. Here in California is just means you have a strange wind blowing,perhaps an ill wind. In any event it was being naughty and breaking lamps.
IF YOU DO SEE A GHOST, THEN WHAT?\
STROKE VICTIM’S LOG:
THE BEGINNING October 11, 2013 — Ken’s caregiver David arrived at 10:00 a.m. I let him in. We exchanged greetings and I mentioned that I wasn’t feeling well and would be going back to bed unti lDavid had given Ken his breakfast. ”When you areready for me to help, let me know and I would get up, get dressed and help get him, ready for the day,” I said returning to my room.
Instead of suggling back uner the covers. I fell It wasn’t one of those dramatic falls where pieces of furniture came down with me. It was gentle and like being unbuckled I slipped from th side of the bed into a pile on the floor. I didn’t feel there was anything wrong, but tried to pull myself using the blankets for that extra support. Nothing happened.
“If only I can get my knees in the right position I’ll be able to stand,” I told myself. Try though I did, my knees just didn’t move. I manage todo this after I do floor exercises even though I look like a lumbering ox fully yoked, but that morning nohing I tried was working.
Next to me on the floor I found a clothes hanger. Again I felt I could take the hanger and hook the metal portion onto the edge of the door and pull it open. That wasn’t whappening either so instead I bangedon the door with the blunt end calling out to David at the same time.
“I’;m all right,” I said to him as he rushed into my room, just help me up and I’ll be fine.”
Bracing my feet agaianst the door jamb, he helped me up and I felt very normal, although a bit light-headed. I helpe4d with Ken and prepared my own breakfast. I also took a shower,and then I went to my computer and spent the rest of the morning reading and answering emails.
Steven Wilson from church was the first to notice that I was misspelling many of my words and writing gibberish. He called me at home to see if I was alone.
“I don’t like what I’m seeing on the screen,” he said. “Are you all right? Is there someone I can speak with?” I told him that Ken’s caregiver was with us and handed the phone to David telling him to answer any and all questions. Continue reading
The wicked witch in the Wizard of Oz had a meltdown. One splash of water and she was gone like my grandmother’s spit on a hot iron. Now that’s what I call a meltdown. No, I haven’t had anything like that and I don’t mean to poke fun at an extremely serious medical condition. Perhaps I’ve wanted to collapse a few times and let them take me away. If only there had been more time, and I needed the respite. But the days are always lacking in enough hours to get the necessities done and over. Having a meltdown is not nor has it ever been on my to-do list. Continue reading
October 11, 2013 – Our PC doctor is a wonderful man and has watched over our health care for many years before Ken’s Alzheimer’s diagnosis. For a time, even after we had adjusted to the devastating news, we appeared to be a normal couple coming in for our yearly checkup. But as the years passed and Alzheimer’s slowly took hold of our lives it was me leading my confused husband into the doctor’s office for his annual visit. I noted Dr. Chung’s quiet concern. After he had checked Ken’s vitals, the good doctor punched in the required blood work requisition into the computer, and we were off to the lab. Before leaving he shook hands with Ken, and then turned to me asking, “How are you doing,” with the emphasis on you. “You’re okay — not suicidal are you?” “Goodness no,” I replied, almost laughing. I wasn’t and I’m not. However, as the years drag on a caregiver’s moods and emotional swings run the gauntlet many times over. I’ve found one of the most effective ways to stay posititve is to throw myself an occasional pity-party.
A POLLYANNA I’M NOT
I believe I’ve written that before in other blogs, and I say it again in my own defense because I do strive to be an up person – especially when I’m down. Even so I live in reality and life is not always seen through Pollyanna’s rose-colored glasses. Having, living and caring for an AD patient is the pits and I hate this disease, but I don’t dwell on it.
I recall my good friend Frances as she picked up her phone and spoke in a cheerful voice, “Helloooooo,” she purred. Finding me on the other end she continued, “That was my phony jovial greeting.” We both laughed knowing that the two of us make every effort to sound pleasant and welcoming when we answer the phone. We have cultivated the habit because no one wants to be greeted by a cantankerous, old sourpuss, or a brusque, rude person at the other end of the telephone, or at the door, or in person for that matter. In addition, making a sunny effort spills over into the other avenues of the lives we lead even though those lives might not be a bowl of cherries.
NOT A BOWL OF CHERRIES?
Everyone goes through stages in their lives and not all are what we would want them to be or choose, if we had a choice. If life doesn’t grab us by the throat it grabs those we love by the seat of their pants often throwing them with brute force to the ground. That’s when someone needs to step in and help – and in many cases that someone needs to become the caregiver.
Being a caregiver is one of service and hopefully done with a happy heart. For some it is a burden and a drag on their time and life. This writing is not for the bitter, but for those with a giving heart and the humanness to know and feel the frustrations of this noble calling. Often it is a thankless job especially when the patient is stricken with any one of the dementias. With me, of course, it’s my husband having Alzheimer’s. Being a caregiver can also be lonely – even in a room filled with people. It is exhausting, draining and daunting. While I don’t feel suicidal I have entertained depression. Note that I entertained depression, and then later I sent depression packing.
Recognizing the symptoms I have myself a pity-party. For me it’s a planned and scheduled event depending on need. Somewhere while entertaining depression a good cry is required. Not just a cry, but a good sobbing cry – on the bed and into the pillow with a box of tissue and no one around – the more slobbering the better. That means the timing has to be after Ken is in bed and his caregiver gone. A good Pity Party has no guests, no witnesses and can last as long as there is need, but measured by minutes not hours or days. Dragging it out is not good for anyone, not the caregiver or or the one cared for. Ill people need to be surrounded by people who feel good, and the room needs to be filled with positive thoughts and good vibes . That’s the order of the day.
One particular Sunday I was feeling blue and lonely even though the caregiver was here in the house. I believe the lonely part is about missing my husband — the one I married long ago – my best friend – the one with whom I was to share my old age. Wasn’t it Browning who said to his beloved Elizabeth, “Grow old with me, the best is yet to come. But it was at that low, blue point when everything reminded me of better times when life was good and without Alzheimer’s. The blues got bigger with sadness taking on a lead role. I said to me, “I need a good cry and a thorough talking to by me. Then I’ll be fine.”
Once Ken was in bed and the house silent I retired into our warm office where I folded my arms across the desk (as good as a pillow) dropped my head and let the tears flow. I was nearly to the sob portion when suddenly the door burst open and granddaughter Kristina cried out, “Grandma! What’s the matter?”
“Nothing,” I said, grabbing a tissue. “Really, I’m fine. I just need to cry a little. I’m okay.
“Are you sure you’re all right?” insisted Chris, Kristina’s significant other.
“I’m fine,” I claimed brushing away the last tear and realizing that there was a cancellation banner dropping quickly across my Pity-Party – at least for that night.
A TIME TO MOURN AND LICK EMOTIONAL WOUNDS
When having a pity-party, it should be private and you don’t need an unexpected hug to make you all better. As good as a hug is we just require some alone time to mourn and lick our emotional wounds until the pain subsides; time to be self-indulgent, to feel sorry for ourselves – even to wallow in a little self-pity – and then a review of your blessings. Life with AD is not all bad, but other than a good support group no one knows and understands your misery and isolation better than you.
There are times when I go to bed on the late side knowing, with certainty, that I won’t have any night visitors, and it’s okay to have a small pity-party. (Bless their young hearts for their sweet concern and hugs. It was actually nice to see them.) In the darkness a few tears puddle onto my pillow before I fall asleep. I believe it’s healthy to cry every so often pulling pain from the growing Lake of Tears – relieving pressure so the dam doesn’t break. Be observant though that crying isn’t constant. “Cry a little and often,” I counsel me because afterward I do feel better, especially following the “me” lecture and a gratitude prayer. That’s when I’m able to tell Mr. Depression the party’s over and show him the exit door.
NOTE: While writing this post, Ann suffered a slight stroke. Except for the line of gibberish that was deleted, there were no other signs. Gibberish in other emails she wrote that night caused concern from others, who called her son. She was taken to the hospital where tests were run that decided that stroke was indeed the cause of her slight writing mistakes. There were are no known other side effects from her stroke experience. I offer this information, not only as a plea for all to keep her in their thoughts and prayers but as another sign of unusual behavior to look for of stroke. Thank you – Deborah Schultz
October 4, 2013 — “Where there’s life there’s hope.” I wrote about that very thing a good while back relating to an out-of-state automobile accident in which our eldest son Kevin had been terribly injured. While we waited for him to wake from a coma we became acquainted with another couple also waiting for their young son to wake from a coma after his car had been hit by a train at an unmarked crossing. All of us were filled with hope which, at the time, was racked with concern yet buoyed by unyielding faith, strength and determination that our young men would recover. Kevin awoke from his coma and we brought him home to finish his healing. We never heard about the other youth. I hope they had their miracle as we had ours.
HOPE CAN BE COMPLICATED
With victims suffering from Alzheimer’s disease hope becomes more complicated. Once diagnosis is made and confirmed hope is momentarily lost: no magic bullet forthcoming and no scientific breakthrough at the present time. Alzheimer’s is a sentence to death by degrees, increments, plateaus, steps and the slippery slope with all leading to a deep, dark pit of no return filled with despair for loved ones before the patients actually close their eyes for the last time. But hope – a different kind of hope — remains throughout. It is, and must be, more than an intense desire. Continue reading
ALZHEIMER’S: “IS HE FOR REAL?”
Septemer 27, 2013 — “Is Ken putting me on?” That was a question many years ago from Steve several months after Ken was diagnosed with Alzheimer’s. The man to whom Steve referred looked like Ken and sounded like Ken, but what Ken was saying just didn’t make sense. For Steve, that wasn’t Ken or Ken was teasing after many dormant years.
We’ve known Steve since the day he was born. Near the same age as our older son he and Kevin were just a few of the kids growing up on our block as they all leaped from babies to children to teens and then entered into adulthood.
Through the years, Steve and Ken developed a relationship almost like family, as my friendly husband did with other young people in the neighborhood. It was well into the age of the baby boomers. Young families filled their tract houses with children who had been delayed by World War II and the Korean Conflict. The returning G.I.s more than made up for the better part of those years lost fighting for freedom. Consequently, birth rates were at the top of the charts and children were everywhere.
When school was dismissed in late May of each year our one-block street looked like the school yard at recess time. All ages were in and out of one another’s houses — and bathrooms — playing soft ball on the quiet street, racing through back yards, climbing on swing sets and jungle gyms, splashing in wading pools and some learned to swim in the neighbor’s pool. So in the natural course of events that feeling of a neighborhood family was part of their growing-up years.
The adults watched with a mixture of parental pride balanced with noted discipline and to keep the balance there was a bit of teasing and tom-foolery. Ken was a kidder from way back, and took special enjoyment in not only teasing his own brood but the children of his neighbors too, especially Steve. Being a serious child he took most of Ken’s torments as truth. Of course Steve outgrew his gullibility and as adults there was fun and mutual respect, with the generations blending and becoming good friends. Continue reading