blessings

Blessings In Disguise

Ken, Mabel and his daughters Julie and Debbie and daughters-in-law, Mary and Sabina at his 80th birthday 2005

This is, possibly, my last guest post. My mom should be back here writing next week – or soon thereafter.  Debbie Schultz

One of the blessings that came from my turn at caregiving was a chance to become reacquainted with my dad. Obviously he is not the strong, but gentle man, who raised me, helped me through a divorce, get back into school, and proudly watched me graduate from college at the age of 41. This man is definitely different, interesting in his babbling, making sense only in fragments. He was always a great storyteller, but even that aspect is gone from his tangled brain. I see his personality in layers. Some of the facial expressions I remember as a little girl, the mannerisms are still there. When I first arrived here from my home in Utah, he was lying in a hospital bed, mumbling in heavily sedated sleep. He seemed so very old and vulnerable to me. I softly stroked his head and muttered my good byes, thinking that might be the end. But like my mother, he has a tremendous will to live, and two weeks out of the hospital, he is gradually becoming his old pre-accident, self.

The disease is horrifying, taking a person a bit at a time, but in a somewhat detached way, it is also fascinating. What makes a personality? What bits and pieces of one’s history stick, and why do they stick? What jogs memories? Why do some things stand out, while others are forgotten? When asked, he will say he has no children. He confuses me with my mother, but I correct him and tell him that I am his daughter and I love him. I  especially use the technique when I am doing things he doesn’t want done, like showers. Looking in his eyes and telling him seems to calm him. I call it speaking spirit to spirit. And when my daughter goes to move something of mine, he says, “Don’t touch that, it’s my daughter’s.” For a brief moment I am remembered.

He knows he was in an accident. The first few days he was home from the hospital he complained about being stiff and sore. He told me that he hurt because a truck hit him. He knows, when he remembers, that my mother is in the hospital. His love for her, despite the forgetfulness is so evident. Besides often asking where his wife is, there is wistfulness in his wanderings. He sleeps on his side of the bed, waiting for her to come. He asks me if she is working and if so, when will she return home?   Although my voice may sound the same, my reactions are different than hers. He is confused by the similarities.

I am grateful for the opportunity that I have been given to get to know my father all over again. I have more feelings for him as I have served him these past few months. I miss the man that he once was, but I love this frail, funny, shuffling person he has become. Who knows why we go through the things we do in this life? As hateful as this disease is, it often brings out the best in the people that it touches. I have gained a new appreciation for my mother and all she has gone through as she cared for the other members of our family, who were also struck down by Alzheimer’s. The positive side of this negative situation is the opportunity I have been given to serve my father and make some effort to understand what has happened to change him. Without caring for him, there would not have been the reconnection I have felt.  When he is truly gone I will not only mourn the man my father was, I will also mourn who he has become. I am indebted for the chance that I got to know that other man.

Originally posted 2010-04-28 03:39:46.

AFTER CHRISTMAS CHATTER

December 29, 2008 — Right now I’m so busy.  My friend, Madalyn, whose husband died last year from unrelated causes, but was into full Alzheimer’s, gave me her “reference” book:  The 36 Hour Day.  My days often seem to be that long, but even if I had the 36 hours I doubt I could get done all that needs doing.  Often it feels as if I take three steps forward and by the end of the day have dropped back three miles.

Ken and I have been in this battle with AD for the past five years, with each year becoming worse.  For the most part, however, I know that I am basically very fortunate.  I do count my blessings and give thanks daily for the health and strength we have.  I am so glad that he can still perform all of his daily tasks regarding his personal needs.  The accidents have been very few.   I’ve noticed, though, that he is becoming more self-centered.  Every movable item is of extreme value  to him whether it belongs to him or not.  He often takes things from any room, but especially from the bathroom relocating combs, a razor or toothbrush elsewhere claiming, “These are mine.”   The next morning he is very angry when he finds his razor and toothbrush missing from the medicine cabinet where he normally  keeps them.  I realize, though, that his missing items are the least of our problems and nothing compared to what many other people with AD or related diseases are experiencing.

I try to compare where we are on this bumpy Alzheimer’s road by reading articles and blogs from others in an effort to gain more understanding.  Wondering how others cope with hurts both physical and emotional I find it very frustrating when Ken doesn’t remember me and wants me to get out of  “his” house.  He often becomes angry and at times threatening.  When he insists that I leave I lock myself in the room we converted into an “office” which makes him even more angry.  He pounds on the door and yells at me, but soon returns to the family room where the TV has been entertaining an empty room.  After a while he has forgotten the incident, and I join him going about our regular routine.

Ken’s remembering me is an “at times” thing, but not remembering makes up the majority of our days.  I recall how hurt I was the first time he didn’t recognize me and I cried.  Amazing how we do adjust to “what is” even though we don’t like it.  Our marriage had been a close and loving relationship and now it seems more like a child’s see-saw with all of its ups and downs.  I suppose it’s all part of accepting those things we cannot change.

Moving right along, Tim did bring the dogs.  Ken enjoys them and misses having a devoted pet.  He doesn’t remember that our two dogs have been gone for a few years and often goes to the back door and whistles for them to come in.  I am saddened by the action and I’m also sure he would enjoy the loving company of a another dog, but I have as much as I can handle caring for him.  The dogs on loan confirm that decision.

Individually, our hairy coated guests are very nice, but with three they seem to conspire.  Each morning I find that one of them has been naughty — possibly all of them depending on the size of the lake in the middle of the floor.  The three just sit there, all  in a row, looking up at me with such innocent faces as I accusingly gaze at the puddle and then at them.  Following my glance all six eyes seem to say, “It wasn’t me.”

Tonight one of three got behind the Christmas tree and tipped it over.  Oh, well.  Time to take it down anyway.  There were several ornaments on the floor with the three sitting silent — watching — their sweet faces taking on that look of sincere innocence once again.  “I won’t even ask,” I said to the trio.   I quickly picked up the tree, righting it as best I could, and then gathered the tempting objects scattered across the floor as I was certain they would be the chew-toy choice for the night.

As much as I love these adorable canines, and their company, I must admit that I am looking forward to one happy day next week when the triplets go home.

 

Originally posted 2008-12-29 06:21:20.

THIS IS WHO I AM

INTRODUCTION

December 20, 2008 — This is who I am:  Ann Romick or Mrs. Kenneth Romick as I appear on the bill from my long-time Macy’s card.  However, my birth certificate reads differently with the name Mabel preceding Ann.  For many years now, I have used my middle name Ann as my pen name.  The trouble with being Mabel is that it is a very difficult name to live with, and I have found that Ann, being a bit on the bland side of the rather zesty innuendos my first name often generates, makes introductions more comfortable.  Besides, I have found that “Ann” is more reader and editor friendly.  Yet, I am who I am, and if I were nameless I would still be me.

That said, my writings are not about my name, but about living with Alzheimer’s disease on a 24/7 basis which will not only include happenings about me and Ken, but generations of family.  Remembering and appreciating the past and learning to live with, understand and accept the present can bring both joy and sorrow.  The writings, memories and musings involve our parents, friends, aunts and uncles, our children and our extended family which spreads in every direction, plus a glimpse of the circumstances which tie us all together.

Ken and I have battling his Alzheimer’s since January of 2004.  Actually, I have known of its high probability for much longer as both of his parents were victims as is his sister, Loretta.  I first noticed signs of Ken forgetting in the late 1990s.  There were small indications: forgetting things we had done, some of the places we had been, but the glaring forgetfulness was his inability to find the homes of our children who had lived in their same houses for years.  Somehow, he couldn’t remember how to get there without my help.  Finally, we visited a neurologist.  I shared what I knew, but added.  “Perhaps we can say he is just forgetful.”  So for a year we pretended nothing was wrong.  In 2005, the diagnosis was confirmed:  my husband had Alzheimer’s.  Even though I could see it was coming, it was an awful blow; no longer was it “maybe” Ken has AD.  It was now chiseled in stone.

My life has become a constant struggle, and this will be somewhat of a journal which I will write on a regular basis.  Writing is therapy for me which allows me to read my own thoughts giving me a broader perspective of other caregivers who are keeping watch over their loved ones no matter what the disease.  Some days, thank goodness, are rather uneventful.  Meanwhile, and on good days I will look for, appreciate and count each and every blessing.

Originally posted 2008-12-21 06:41:30.

BLESSINGS FOR THE CAREGIVER

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BLESSINGS FOR BEYOND THE CALL OF DUTY

blessings

Caregivers who go beyond the call of duty deserve extra blessings.

February 5, 2015 – In caring for anyone with a long term illness including Alzheimer’s, I believe extra blessings are in order for those caregivers who go beyond the routine and expected. They turn a tedious and tiresome duty into something filled with love and service.  Their attitude changes the degree of comfort into something special felt by all involved with the patient.  As the main caregiver for my husband Ken who passed on in October of 2014  I will always be appreciative of these special caregivers.

There is a vast store of helpful information out there for caregivers to rely on, no matter what the disease. Within the same publication I listed previously, I found Beatitudes for Care written by Pat Warner, RN, MSN, Roseburg, OR: Oregon Alzheimer’s Support Group. I enjoyed reading her thoughts. However, I find that her thoughts are not my thoughts, so I have borrowed her idea and will write my own blessings or beatitudes from my own perspective and experience. In all probability I won’t have as many as she has listed, but in my heart there may be more than listed. Continue reading

Originally posted 2016-02-07 00:40:30.

SUPER BOWL GRATITUDE DAY

football game

Though gratitude may not have to do with football, to this caregiver it makes Thanksgiving, the superbowl of gratitude.

I never think of November without conjuring up thoughts of Thanksgiving which I have come to refer to as the Super Bowl of gratitude. There are a few grouches out there who believe the holiday is all a bother. No doubt the naysayers are imagining some corporate CEO greedily scooping up profits from the turkey market. Even if that were true the holiday is and can be so much more.

Squeezed in between Halloween (which seems to be getting bigger and better every year) and Christmas, Thanksgiving looks to be the forgotten holiday. No one appears to give it much thought except school children with their Pilgrim collages and hand-traced-paper-plate birds, and supermarkets whose windows are adorned with cornucopias, autumn leaves and fan-tailed turkeys.

So I find that before the family gathers around the table on the 4th Thursday of this month I begin early to count my blessings. Actually, I do most every day when I offer my morning prayer of gratitude, but sometimes it takes a reminder to appreciate things we take for granted, and don’t always think of as blessings – only bills.

I’m the first one to grumble about the increases in our utility costs, especially with the tight economy and our very tight budget, but what if gas and electricity weren’t available. The other morning, just as my day was getting started, the electricity went off.  It’s happened before, many times, and it’s always such a surprise. My immediate reaction – always — is what’s wrong with the lights? Automatically, I flipped a few switches. No electricity. I knew that already. There is something about a power failure that announces exactly what it is when it happens: the power fails. Perhaps it’s the suddenness followed by a brief, yet eerie silence as everything stops that momentarily baffles our senses.

Outside, there was plenty of light, but neither of our bathrooms has a window. Question: What shall I do until the power returns? Answer: I’ll prepare breakfast. Wrong, the stove is electric as is the microwave. When Ben gets here we can get Ken started on his day. No we can’t. The bathrooms are dark. Check my email, vacuum the rugs, wash/dry some clothes, or mend some of Ken’s things waiting for me on the sewing machine. Can’t do any of those catch-up chores, there is no electricity. Instead I made my bed, and before Ben arrived the power was back on. I went about the day immediately dismissing my half hour of inconvenience. When in reality, utilities, even though we must pay for them are blessings taken so for granted.

The next day the wall furnace, in the family room, where Ken “lives” (eats, sleeps and sits) stopped working. “When troubleshooting a furnace,” someone had told me, buy a new thermostat.”  I did. “Who told you that?” asked the servicewoman from PG&E as she sat cross-legged in front of my ancient wall heater. I gave her a “duh” answer to which she replied, “The first thing you do is call PG&E.” More often than not their house call can get the heat up and running, or they can tell you what’s wrong but they can’t fix it as the problem is beyond their service parameters. And they do this as a free service. She even installed a new thermocouple to match my new thermostat. “Don’t get a new heater,” she advised, “It’s a valve, and you need to get a good heater/plumbing person.”

The PG&E service woman who came and the people in the office with whom I spoke about the problem were incredibly helpful. They all got a “5” on the follow-up phone survey and I am so grateful for their help.

“Mason can fix it,” said a sweet young friend, Tara, when I mentioned my problem. “I’ll have him call you when he gets home.”

So that’s where we are this week in life’s comedy of ups and downs, struggles and solutions, and I am grateful for the kindness, the advice, the help and the general goodness of people, and to Mason who put the heater back in A-1 condition. Grateful for my comfort-filled home; certainly an understatement. Today’s homes are filled with luxuries beyond measure. What a marvel our lives and conveniences would be to our long-ago ancestors: running water in the house – hot and cold – heat on a chilly day, sanitation, lights to take away the darkness, a stove to cook our meals and a big white box to keep our food cold and fresh.

Setting aside the wonders of our modern world I can’t forget so many wonderful people who will and do step forward to help. I could go on, but I won’t. I have to save some thoughts for Super Bowl Gratitude Turkey Day when I will share my appreciation and feelings of love with those I am passionately thankful for: my family.  Ken and I are truly blessed.

Originally posted 2011-11-12 04:01:01.

CAREGIVERS: UNPACK THE ROCKS

pile of rocks

August 3, 2011 — As a Scout Master Ken spent part of many summers as a Boy Scout camp counselor.  For some of the young men it was their first experience in the great out-of-doors where they also earned a portion of their merit badges.  However, Ken always believed the troop could do more. During a planning meeting with the assistant Scout Master and some of the dads, it was decided to put the boys to a greater test:  a 50-miler up and over some of the high terrain of the Sierra-Nevada Mountains.  The idea was received by all with great enthusiasm and after the first year it became an annual event.

Preparation was paramount and the Scouts did their exercises by strapping on a fully loaded pack and hiking into a designated camping spot several weeks in advance to make sure they were physically ready for the challenge that lay ahead.  None was more eager than 12-year-old Mark who had looked forward to beginning his Scouting experience and the summer’s challenge.  Like many typical pre-teen boys Mark had not hit a recent grown spurt still holding on to the knobby knees and colt-like legs of childhood.  Yet he was determined to meet the qualifications of the pre-hike semi-Bivouacs.

In the minds of men working with boys there is a purpose to what they do.  With each 50-miler the adults hoped to instill something more than just a week in the wilderness.  Countless opportunities lay in abundance including self-grown —  the physical and emotional challenge of accomplishment.  As an adult Mark looks back on the entire experience with fond remembrances which he has allowed me to quote.

“I so looked forward to being included in the 50-mile hike the troop took each year.  Everyone prepared for it with mini trips, but there is nothing like the real thing, which took us into the Hetch Hetchy Reservoir area near Yosemite.

“We hiked 10 miles the first two days which was grueling as we made our way up the mountains ascending to heights which none of us were accustomed.  The switchbacks taunted us as we made our way back and forth and up.  It seemed my backpack grew heavier with each turn of the trail.  At the top of the last set, I discovered why it became more weighted every time we rested.

“A few of the older scouts felt it would be amusing to see the expressions on the faces of the two 12-year olds as they discovered they had carried a few stowaway rocks up all of those switchbacks.  I laughed, but was secretly thankful for those rocks from that time forth.  After liberating them from my pack, I found I had no problem carrying the lighter load.”

Mark learned a very profound lesson early in his life, and he continued to apply the importance of eliminating excess baggage – rocks — from his journeys through life.  As caregivers we need to remember to strive on a daily basis to do the same.

After being away from home for three months following a horrific automobile accident, I returned to the familiar, yet the unfamiliar.  My life had been drastically changed. Ben was taking care of Ken, for which I was grateful.  Not being the same as I had been I wasn’t able to get back to status quo, nor was Ken the same.  His battle with Alzheimer’s now included him having to adjust to all of the new changes in his life.  Ben was new, the routine was different, his abilities had been greatly diminished, and my late entry caused him to become more confused.

Even with his AD I wanted life to be as it had been before the crash.  I knew where he was and right where the two of us had been in living and dealing with the disease.  Now I had to start my relationship with Ken all over again while still nursing my own hurts and injuries.  Consequently, my disposition was definitely wanting.  “Are you mad at me?” he asked one day during a lucid moment.  “No,” I answered, “I’m not mad at you.  Why?”  Sadly, he looked at me and said, “Your voice always sounds as if you’re mad at me.”

That caught me off guard, and I thought about our conversations – minimal though they were – I realized he was right.  Whenever I spoke to him, whether he was Ken or Mr. Hyde or Buddy (his various personalities) I could hear the irritation in my voice. So I had to ask me if I was mad at him – angry with him — if so, why?   Thus, I was back to soul searching – which I have had to do every so often. Yes.  I was angry and I was taking it out on Ken, including his lucid moments.  Moments, so few and far between were being wasted with my irritation.

However, I was feeling anger because of all the time lost being badly hurt and having to take more valuable time to heal and to go through physical therapy.  Angry because I couldn’t do all that I had done before.  Angry because I still wasn’t my old self, angry because I had continued discomfort and pain.  I was angry that Ken had Alzheimer’s, and angry that there was nothing I could to about it.  If he noticed the irritation in my voice, did I have the same irritation when I spoke with others?  After a little soul-searching, I knew it was time for me to begin removing the rocks in my mental and spiritual backpack, and in so doing I would also find some peace.

Nothing is instant – except maybe potatoes and coffee – and I knew it would take time for me to bring about my goals.  The first baby step was to stop taking out my anger and frustrations on other people – especially Ken.

As a caregiver, I cannot change anything with anger, neither can I undo yesterday, nor can I cure incurable diseases even with over-the-top anger. Being angry only adds a heavy rock to my already burdened life, and as Mark said, “After liberating the rocks from my pack, it was easier to carry the lighter load.”   Little by little I have managed to remove the rocks of anger.  I also lighten my load by striving every day to find something to laugh about with Ken – maybe not with him – perhaps with Ben or Criz.  We can laugh about something Ken does because at times he and other AD patients are funny and it is okay to laugh. If you haven’t laughed all day then read a funny book or rent a funny movie, but laugh. The more I laugh, the more I can let go of anger and any other negatives which are always nearby and ready to sneak into my backpack.

This past year plus has changed Ken a lot.  He seldom has lucid moments when he can manage any sort of conversation.  Whatever he jabbers it’s without logic.  His other personalities are gone.  There is no Buddy, nor does Mr. Hyde visit, but that’s all right.  They were both rather disagreeable characters.  What’s left is a small portion of Ken who makes little sense. We are where we are in this life, and I know I must strive to be continually accepting.  In doing so, I often remember the serenity prayer, which I’ve always liked.  It’s so applicable for those of us who journey together with our Alzheimer’s loved ones:   “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”  So now, let’s begin by liberating the rocks, including the tiny pebbles of negativity, from those heavy backpacks.

Originally posted 2011-07-03 03:06:39.

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