My dear husband has been gone since December 8th. I have struggled to write this. Started and stopped. Wondered exactly what to say….it is profoundly difficult for me to put into words how I am feeling and how astonished I am that his journey was as short as it was.
Up until approximately two weeks before his death, we would sit every morning for coffee and chat. He was very cognizant of his illness, his decline and how he wanted to spend his last days. He knew how he wanted his funeral and his burial to proceed. Difficult conversations that we had had many times. He just wanted to make sure that everything was “done” according to plan. He wanted to make sure that I had the house in the shape to make it easy for me to maintain, He wanted to make sure I understood the finances and other things, He wanted to know whatever I knew about Lewy Body and his final days. He wanted to know what it would be like to die, You see, Gary always wanted to know that plan. Planning was part of his life, and although you can make some pretty good plans with Lewy Body Dementia….it is a disease of ups and downs. One that is predictable in it’s unpredictability. But despite that, he knew the end was near. He planned most of his funeral himself. He asked me not to hold a luncheon in the church basement, but to hold it somewhere that people could have a class of wine and raise a toast. He worried about me. He so hated to leave me alone. We sat together often….he in his rocker and me kneeling between his legs, both of us weeping with the knowledge that our life together on earth was coming to a close. We loved with an intimacy and depth that we treasured and his dying would change all that.
Speaking on the telephone was difficult and stressful for him because he became so afraid that he couldn’t find the right word that he avoided the phone at all costs. He and I sat down and wrote an email to his oldest two children approximately 6 weeks before his death. He couldn’t really type out an email, so I became the transcriptionist. He wanted them to know he loved them. He wanted them to understand his time was short, He wanted them to know he had tried to do his best for them. He wanted them to know they continued to be welcome for a short visit but his condition was such that we no longer hosted overnight guests. He wanted them to know that when he was dying he wanted no death bed hysterics or confessions, apologies or regrets. He had me read that e-mail to him over and over. He changed wording, deleted passages, added things until he felt comfortable that it said what he wanted. He was a gentleman and wanted to make sure that even though he had not heard from them or seen them in a long time, he had loved them dearly as had I. But now, he knew in his heart he was dying and he needed to concentrate his efforts on that. He had been asked by all of us many times if he wanted to see anyone. Did he want his son-in-laws to drive him to see family in Chicago or Milwaukee or Rice Lake? The answer was always no. It would be more stress than he could cope with. He seemed resigned to the fact. He would only do what he wanted to do and visits from family/friends in his own safe environment was the most he generally wanted to do,
He had told me not to buy him any Christmas gifts and if I already had, to give any electronics to Katherine his daughter born to the two of us and to give any clothes to his son-in-law Michael. Two weeks prior to his death, he told me he would be gone in two weeks. He was correct right down to the day. As you may have read in my November 26th post, Thanksgiving week was extremely difficult. His conversation became less lucid, he ate very little and became extremely restless….he experienced a couple of falls which resulted in bruises and bumps…..it took 2-3 of us to walk him and he insisted on walking. His hallucinations became more frequent. He didn’t sleep despite medication. We were all stressed, exhausted and beyond knowing how to cope even with outside help. Finally my oldest daughter said “Enough” we need to take him to the ER. We went to the ER where they were compassionate and kind. They admitted him for dehydration and assigned him to one-on-one nursing for the night. The next day in speaking to the neurologist, she said “he is ready for hospice.” Fortunately hospice accepted him and he was allowed to stay in his same room as an in-house hospice patient. He almost immediately began to refuse food and drink, which he had told me he would when he felt his life was no longer meaningful. We stayed with him, washing and shaving him, rubbing the cramps from his legs, praying over him, weeping together as we whispered again and again of our love for him, how we would take care of each other. We told him it was OK to leave whenever he was ready and that soon all his questions would be answered and that in what would seem to be but an instant we would be with him again.
In the early hours of December 8, 2014 he drew his final breath knowing he was loved beyond measure while the gentle sounds of piano Christmas music played in the background, disguising our muffled sobs. Sleep sweetly my love. Your earthly journey is finished
I am an “I can do it, fix it, manage it, figure it out” kind of person. I generally believe that no matter how daunting the task, I am up for it. Yes, I have been realistic in most ways as well and have done those things that I thought would improve our lives and keep hubby safe. Despite that, the events of the last 10 days or so have proven to me that I had not truly believed that Mr. Lewy, who I imagine as a dark evil intruder with glowing yellow eyes, was really going to win this battle no matter how hard I fought. I have become a believer. He will win the physical battle and perhaps sooner than I had imagined.
Every since hubby had the devastating fall which fractured several facial bones, I have seen a distinct cognitive and physical decline. Every day has seemed worse than the last. I had been tasked by the neurologist to monitor his blood pressure and according to his orthostatic BP the neurologist has “tinkered” a bit with his medications, but not to the level that would cause the horrible changes I am seeing daily. Issues of balance and gait make every short walk heart wrenching and nerve wracking. I wait for another fall even as I try to prevent it by being extra vigilant. Despite my careful watch, hubby has taken several “minor falls”….which is how I classify a fall with injuries such as skinned knees and bumps and bruises. Confusion has gone from minimal to so significant that at times I feel like we are speaking in foreign languages. I ask a question and he answers with such a bizarre sentence that I wonder what he can possibly be thinking. Last weekend, his reality was that the yard was filled with invaders. He insisted on going outside to evaluate the situation and wanted to take our large green garbage can with him as his weapon. When I would not let him take the garbage can through the snow filled yard to fight imaginary invaders, he decided to come inside. Then there is the issue of directions….he cannot follow directions…at all. A few evenings ago, I was fixing dinner and he asked what he could do to help. I asked him to fill a glass with water and put it on the table for us to share. He filled a glass with spring greens from a container that was sitting on the kitchen island and put it on the table and then proceeded to sprinkle spring greens throughout the living room. He has episodes urinary incontinence. He doesn’t remember the layout of our home. He sometimes becomes quite agitated and cannot hold still. Gone are the leisurely mornings where we would share a conversation and our coffee. Yes, he will drink a cup of coffee, but he will be in 5-6 locations in the course of one cup of java. He tries to move the furniture at times for no reason. He takes the cushions off the couch. Why, I ask? He doesn’t know. He weeps with frustration and the knowledge that he doesn’t “feel right”. I weep….daily these days and sometimes hourly. Sometimes with frustration, but more often with grief. I can’t seem to find my soul mate at all on some days. There is no gleam in his eyes, no smile. The realization has come to me at last. I cannot fix this. No matter how much money I spend, no matter how hard I try, no matter how many doctors and tests I subject him to, I cannot change what will ultimately occur. Mr. Lewy Body, has become the conductor on this train. He no longer is simply an annoying hitchhiker. He will have his way with us and the journey will end in death. If I am fortunate, I can manage my husband’s care and my own health with the help of family and outside help. I begin the process of finding in home help and begin investigating hospice care.
I try to find the beauty in the season. The view from my home is beautiful with snow covered trees and ice beginning to form in the river. I try to look forward to the holidays. A planner, a doer, an over achiever of sorts, I have most gifts purchased and wrapped….and they will all coordinate nicely with the holiday décor. I think to myself, it really doesn’t matter. Will anyone care? I know I won’t. I know hubby won’t. Those things which were once seemingly important, now hold no charm for me. Christmas cards are addressed and short notes written with photos enclosed from our summer photo session. Hubby with his four favorite girls (me, our two daughters and our granddaughter who is a delightful three years old)….even as I look at the photo, it seems as if the light is gone from his eyes.
I must acknowledge it. My heart is heavy with grief. I am stressed, sad and sorrowful. I don’t think I truly understood the depth of grief until recently. It is a physical pain of a nature I never realized. I pray, I talk to my children and sister…exchange notes with my brother. I try to find pleasure in the smallest of things. I make every attempt to choose to be OK. I try not to let grief render me joyless because once the conductor has taken the final ticket from hubby, I will still have a journey to complete.
May you be blessed with health and happiness this season. Enjoy every moment with those you love. Use your time wisely and express your love freely and frequently. Nothing will ever be as sweet as time with those you love.
I have noticed in the past weeks that there have been subtle changes occurring with hubby. Word finding continues to be an issue and night terrors and REM sleep disturbances are more pronounced. One of the more troubling symptoms of Lewy Body Dementia is changes in consciousness. My hubby had never actually lost consciousness, although he has been troubled with light headedness from time to time and it is clear that his cognition varies from day to day for no apparent reason and based on stress. This past weekend we had a lovely time. Our daughter and her husband who live near by drove us to meet our youngest daughter and husband in Lacrosse. We stayed in a nice suite, visited some great restaurants and vineyards and just generally had a wonderful time enjoying the fall colors and the company of our daughters and their husbands. We got home in the early afternoon Sunday with time to rest and enjoy the remainder of the day and slept well Sunday night.
Monday morning seemed like every other Monday. I got up early as our 3 year old granddaughter comes on Monday and goes from our house to preschool. Hubby got up a bit later and seemed cheerful and pretty asymptomatic in terms of unusual symptoms. Of course he was a little confused and had some word finding issues, but nothing unusual. Hubby and I had breakfast and I was cleaning up the kitchen when I heard the chimes on the backdoor signal that he had gone into the garage. I assumed he had gone to place the paper in the recycling bin. A moment or two later I hear a thud. Hmmmm….did he drop something? I wait a moment to see if I hear anything else and then go to the door and open it. Yikes! He is lying “face planted” on the concrete floor of the garage at the bottom of three steps with his head surround by a pool of blood. His breathing is labored and sounds like a gurgle. I run to check on him and he is clearly not conscious. I think he is dying. I turn his head to the side so he isn’t inhaling blood and run for my phone calling 911. I also call one of our good young friends who is a school principal at a school a couple blocks away and he is there before EMS. Hubby begins to gain consciousness, but he has a hugely swollen eye and good size laceration above his eye.
EMS takes him off to the hospital and our friend takes me and also contacts my daughter and tells her to meet us there. Hubby’s consciousness and orientation seemed good when we got to the ER. A CAT scan of the head and neck show no “head injury” but numerous fractures of the orbit, sinus etc. The ER Doctor wants to keep him, but hubby wants to come home and I think we can manage. He is sutured, given pain meds and antibiotics and off we go. Our son-in-law makes us homemade chicken noodle soup. Things seem pretty smooth. The next two days are difficult, however. Cognition is markedly changed. Hubby is not doing well following any directions. He is in pain, restless, confused. I know that Lewy Body is exacerbated by trauma, infection and stress and we see that first hand. Text book perfect! I fear that he won’t “snap” out of it. That he has passed a threshold that there is no way back across. Miraculously he wakes up Wednesday morning and is quite cognizant of what is going on. He has regained some strength, walks better, seems in less pain. We visit the facial surgeon who confirms “too many cracks and breaks to count including the sinus” but suggests conservative treatment with follow-up. A list of “don’t” and “do” and off we go with a follow-up in 4 weeks. Hubby has a good evening and sleeps well.
This morning he has another episode of syncopy. He does not fall, but feels very faint and must hold on to the dresser and lay his head on the dresser to keep from falling. Strangely he then becomes much more confused. He tries to help set the table, but cannot follow any directions. He looks restless, more tremors than usual, can’t seem to tell me if anything hurts. I take him to the couch and he sits while I turn on the golf channel. Always a favorite. He seems to improve a bit, but he asks me if it is Saturday (it is Thursday). We talk about what is going on and his cognition seems to improve. I talk with him about not going outside when I am gone or without telling me. I am putting a sign on the doors. Our doors chime when opened so if I am at home, I will hear them if he opens a door. I have a locked gate on the basement steps which reminds him not to go downstairs without me. For the first time, I realize that the need for help may be just around the corner. It is probably not safe to leave him alone at all….but it is apparently not safe when I am here!
Mr. Lewy, the dark and sinister hitchhiker seems to have decided to visit with greater vengeance. He may have a stopped just taking brief outings with us and he may have settled in for the duration. Is this the marked change I have been dreading? Lord give me the wisdom to do what is right for both of us and for my family. Keep me strong, help me make rationale decisions, continue to help me find joy in the small things in life. Help me be cheerful and loving to the man who has given me the best years of my life and gave me our brilliant and beautiful youngest daughter. Help me travel this journey with grace. Remind me to accept help when it is offered, to continue to take care of myself and to take time to enjoy those people in my life that mean so much to me.
For the readers of this blog, once again I implore you to take a moment and enjoy the small pleasures of life. The smell of coffee or good wine, the scent of a candle, the beauty of the earth, the hand of a child in yours. The touch of your spouse, your friend, your child or your parent. If you are a believer, pray…if not meditate. Calm your mind, so that you can think clearly. I once again say with conviction that I choose to be OK….but now I qualify that to include that I will be OK with the help of God and my family and friends. This journey will be challenging and rocky, to be sure.
I have always enjoyed autumn. A beautiful season with a myriad of colors…the smells of baking, wood fires, spicy candles. Warm afternoons with cool breezes. Autumn this year feels different. I feel more like it the autumn of our life together. The changes are subtle but noticeable. I can’t deny the problems that torment him. The awful night terrors despite medications…the kicking, screaming, punching….I am more frequently driven to seek sleep in another room beginning about 4:OO AM. The droop of his eye, his slack jaw while watching TV or other activities, the problems word finding, the anxiety and depression. They all combine to remind me daily that this is the autumn of our life together.
Yes, we take walks, embrace, smooch,talk about our children, go to church, shop together and amazingly still make plans and decisions together, but more often than not, he says “Okay” when I know he couldn’t repeat the question. He has more difficulty following the plot line of a TV program or movie. He asks questions that seem very odd at times. Lately he has been a bit more prone to sadness and I think it is because another summer is gone. It is autumn and I believe the realization that he now has one less summer to look forward to before his death is haunting him. Of course that is true of all of us, but it seems different when one has a terminal disease. When you don’t just look in the mirror and see yourself age, but see your face is expressionless, your mouth is slightly turned down on the right and your right eye droops a bit….your neurologist tells you it is simply part of the disease of LBD. You get a new LBD journal which again reminds you that your life expectation is 5-7 years from diagnosis. You feel yourself slump…defeat edges in.
He is more apt to fall these days if he is not very cautious. My simply drying him after his shower could tip him over if he doesn’t hang on to the glass blocks of the shower or the hand rails. He did fall off our pontoon boat….no harm except some bruises and the fact that my oldest son had to dive in to rescue him. No more boat rides. He has taken a couple of tumbles in the garage…again bruises only but it is frightening for both of us. Osteopenia (precursor of osteoporosis) makes him more vulnerable to fracture and fractures in LBD (especially hip fractures) can be deadly. I notice he eats less, but his body has changed. His arms and legs are thinner…his waist bigger and his shoulders more hunched. He looks at himself in the mirror and growls “I look horrible”. He really doesn’t look horrible, he is a handsome man, but the changes are marked.
He seems happy to be listening to and contributing to the planning of our oldest son’s wedding next summer. He is very happy for that our son has found his soul mate, but adds, “I hope you go ahead with the wedding at our house even if I am gone”. I just look into to those beautiful green eyes filled with tears and can see he is serious and that he knows exactly what he is saying and what he wants.
I love autumn. If this is the autumn of our life together, I love it too although it is profoundly sad. In many ways we have never been closer. I can almost anticipate everything he wants and needs…he feels my pain in ways he didn’t 15-20 years ago. We hold each other and feel no embarrassment at kissing the tears off the others cheeks. Together we try to shake the dark hitchhiker Mr. Lewy off despite his long sharp talons and continue to travel this journey with as much grace as possible. We will use our resources for what is important to us, we will continue to hope and pray for the health and happiness of our family and friends. We will try to make our lives meaningful for ourselves and others. Despite sadness and the dark shadow that hangs over us, we will look for glimpses of the sun….I see it now…”You are my sunshine, my only sunshine”…I can almost hear my mother singing it to my father and then singing it at his funeral, I love my hubby and I love our life…he is my sunshine, Even if it is the autumn of our life together, I will take every opportunity to reassure him that he is loved by many and particularly by me!
I like to think I am not only intelligent, well educated and naturally curious, but that my judgment is good. I have and I continue to read everything I can about Lewy Body Dementia until I feel like a walking encyclopedia. I believe that know all there is to know (ha!) and I have a clinical background which makes me more at ease with the medical community and more of a natural patient advocate.
Late June and early July brought visitors and with that came a sense of thankfulness that we had children, sister and young friends who visit and celebrate with us. I found hubby to be pretty easily stressed, but he dealt with it fairly well. I was feeling well and had been thinking of starting to wean myself off from my anti-depressant, so I took the plunge and began with taking just 1/2 my normal dose for a couple of days and then stopped altogether. What did I find? That the realization of my life in the future overwhelmed me. I cried about things that I would usually let go. Because hubby was under some extra stress, he was uncharacteristically critical and sharp with me. I was devastated. I sobbed and sobbed some more. But I didn’t resume my anti-depressants. The visitors left in stages. I cried uncontrollably when both daughters left….one who was only going on vacation…the other one who left for her home over 6 hours away and I felt like my heart was breaking. OK, I need to get a grip and manage to function without constantly weeping despite an inner sadness that hung over me like a dark fog.
Fast forward a few days. Everyone is gone. The house is empty. It is our 27th anniversary. We awakened and talk about our wedding day and the places we visited on our drive up the coast line of California on our honeymoon. I begin to weep again. I am totally out of control weeping. I cry, I get momentary control and then I sob again. OK, I tell myself. Count your blessings. Stop wallowing in self-pity. I know I am fortunate. I have 3 children who love us both and who will step up and do anything we need within their means. My hubby is still ambulatory and able to do a fair amount of his ADL independently. I have financial security and we have good and compassionate health care. We live in a beautiful home which has been modified to be handicap friendly. I have nothing to weep about.
I have counted my blessing and then despite my best intentions. my mind wanders to what I not longer have. The hot tears flow fast and furiously. Yes, I have the man I have loved with all my heart for the last 27 years, but I have almost no friends. Dementia does not invite people to be friendly and inclusive. Many people choose not to stay in touch and it is harder for me to stay in touch. I no longer have peace of mind, I am afraid every time I leave the house that he will run into a problem. I caution him not to do anything silly while I am gone. Don’t change any light bulbs, don’t climb any ladders, don’t go down to the river. Don’t use any power tools. Don’t worry if you screw up the TV….I will straighten it out when I get home. I no longer have a place in the community volunteering because hubby is not at a point that he needs a formal sitter, but I am uneasy leaving him too long. I no longer have a close-knit church family. Worship is about all we can manage. We are no longer part of social groups or study groups. I no longer have a partner that can share the burdens of life or the joys. He seems to be so much less engaged emotionally. Sometimes he seems present, but absent at the same time. Starring at the TV or at nothing at all, mouth open….where is he? I no longer have my winter home because traveling is too stressful for hubby and I am fearful of being away from our health care providers and my daughter who lives close to us. What would hubby do if I was taken seriously ill? If I am finding this life difficult, what will I do when things deteriorate? Everything seems dark and overcast. Oh, my gosh….I don’t know if I can do this! I hyperventilate,I pray, I read, I sob at the slightest provocation. I am sobbing so much that all three of my children are concerned. They are calling and texting each other. Strangely, hubby doesn’t seem particularly distressed or concerned with my weeping. I think, to be honest, that emotionally his disease consumes so much of his energy that he has difficulty seeing past his own situation. I haven’t confided in him or my children that I stopped my anti-depressant and honestly, I hadn’t connected my crying jags with the change in my medicine regime. Dah! My youngest daughter calls….I sob…for some reason I say, “well I went off my anti-depressants.” My daughter is appalled and asks if I consulted my physician. Of course I hadn’t. “I am strong, I can do this,” I sob. “Mother!” she admonishes me sternly, “What has changed in your life has since last summer? How has your burden lessened?”, she asks. Suddenly I feel like the child and my grown children feel like my parents. They see clearly what I cannot see. I do need to resume my anti-depressant. I probably need to get back into counseling and I need to see my primary care doctor for a check up. We do need to set up at least a few hours of supervised care for hubby in the fall when our son-in-law returns to teaching. Hubby needs to accept a stranger in the house and I need the freedom to go out without constant worry.
I have resumed my anti-depressant and feel both foolish and much better. Appointments are made to see my doctor and discuss resuming my counselor. Mr. Lewy Body, the dark and sinister hitchhiker on our train of life, had fooled me. I can hear Mr. Lewy’s low chuckle of glee. He had managed to lull me into a false sense of complacency. He tried to convince me that this isn’t so bad….I can do it all myself. I believed him for a moment. Long enough to go off my medication. But now I see it was just his way of knocking me over and reminding me that he has more control over our lives than I had ever thought. Despite my efforts he is with us for the long haul. I am a woman who believed she could do anything she set her mind to and I have been put in my place. Mr. Lewy torments hubby with vivid and frightening dreams, with an inability to do tasks that are multi-step and with the need for a once proud and brilliant man to ask for help putting on his pajamas. Torment if you must, Mr. Lewy Body! I acknowledge that am not strong enough to defeat you, but with help I am strong enough to manage you. I will continue to make choices in life which bring me opportunities for joy. I will choose to do what I can and accept help where I need it. I close with a grateful heart. I am thankful for my faith in God and his awesome love of all of us, whether we are strong or weak. Thankful that I have raised children who care about us and are now at times wiser than I. Such good and kind hearts they have and what strong and devoted husbands my daughters have married! It is a consolation beyond measure that I know they are here for us. I am thankful that dear hubby loves me truly and with his whole heart. Thankful that young friends like Hannah and Andrew, Amy and Andy and Josh and Lindsey keep us in their prayers and do not hesitate to say “we pray for you”. So once again, I bear my heart and soul for you. I hope that reading this somehow changes your day. That you either find strength you needed or compassion
you sought and that above all, you take time to spend with those you love. For life is brief and a simple moment in the sands of time. Love one another,for the fruit of the spirit is love, joy and peace. Peace to you all.
We have finally arrived at the beginning of summer. It has seemed like such a long wait and such a harsh winter. Hard to believe how deep the show was just a few short months ago. My flowers are beautiful, baskets are cascading with bright blooms and my gardens are full of beautiful, fragrant flowers which attract buzzing bees and hummingbirds. I am thankful that we have maintained our sanity, dealt with crises and made every attempt to keep our hitchhiker Mr. Lewy from grabbing too firm a hold on us. My husband continues on his slow decline.Some days it seems as if he is hurdling down an icy slope rather than taking a slow decline. I notice his cognitive skills slipping… more forgetfulness, more difficulty maintaining a conversation and a shorter attention span. I find myself trying to take note of where he puts everything. I am his memory now in many instances. “Your belt is on the hook in the closet, your wallet is in your top right dresser drawer, your Ipad is on the coffee table, your chapstick is on the counter, your coffee is on the vanity in the master bath” that is a very common morning for us.
We live on a beautiful piece of property on a river where kayaking, canoeing and boating is allowed due to the depth and width of the river. We own 3 boats….we never take them out. They are used a bit by our kids and their friends, but neither of us feel comfortable taking them out alone. Sadly, my husband spent every summer of his youth on a lake and we have owned water front property much of our lives, but he is no longer comfortable operating a boat or handling a canoe. He will sit by the river and watch the grandchildren jump off the dock for hours and will sit by the river and just enjoy the wildlife and quiet. But he no longer has any interest in casting a line in, despite the big fish we see jump close to our dock or taking out the boat. He no longer has confidence in his own abilities which makes me sad.
He asks me many questions about my “best guess”. “When will he become immobile? When will he no longer recognize me? When will he no longer be able to communicate”. I try to be as honest as possible while truly not knowing the right answers. I often tell him that I think he is doing well considering the horrible diagnosis he has been given and that we need to concentrate on the here and now. We have done everything we can to assure our home is safe, our finances are in order and powers of attorney, wills, life insurances etc. are signed and appropriate. It seems a strange disease as I see all the cognitive changes that have and continue to occur while still allowing my husband to understand so much of his illness and ask such poignant questions. He is still very capable of deciding many things independently and for that I am grateful. He understands and knows who he can trust and who loves and cares for him.
I think one of the saddest aspects of this disease is that it has taken away our power to plan ahead. We used to travel extensively and owned a winter home. Those things are just too difficult now. Even a day trip is sometimes
simply too much to contemplate. We have several weeks of company booked here this summer. I hope he can tolerate it. Of course, he can escape to the master suite, but he hates to have guests see that he needs to get away from the chaos and the many simultaneous conversations which surround him. Multiple conversations are hard for him to follow and seem to make his cognitive state more unstable. My husband, the perfect host, can no longer fulfill that role. We try to keep company low key and I try to clue guests in on the expectations. We are both planners by nature. We loved to plan together. Now that pleasure is one we no longer enjoy.
Physically, the summer seems to have brought a slower gait, more fatigue and as I have mentioned before increasingly vivid dreams and night terrors. We deal with these things as best we can. We try to stay active, walk, medicate for the night terrors….make changes to allow for a safer environment and wait…..we wait for what is next…we pray for the strength to continue to deal with the changes as they occur…we pray for the grace to approach our life with kindness and charity to others despite our situation….we wait for the unwanted hitchhiker, the dark visitor, the unwanted companion Lewy to sink his claws more deeply in our lives. Some days I wake up and for a moment in the darkened room I think my life is as it was a few years ago…filled with activities, friends, church obligations and plans for the next trip we would take. But I wait a moment and the realization that Mr. Lewy is here to stay floods my consciousness. So today, I find myself hoping that Mr. Lewy will take a short sabbatical….a 3 day vacation….a road trip….anything to just let us allow a few hours of our life before Lewy first visited. Unrealistic, I know. As my hubby so poignantly said being diagnosed with Lewy Body Dementia is like being placed in the “twilight zone”. There is little or no hope for improvement, the course varies and is uncharted and few people know or understand it.
So, I will do what I do every day. I will count my many blessings. First and foremost my dear husband who still wants to make sure that life is good for me. Adult children and dear grandchildren who visit and who volunteer to do whatever they can to make our life easier. The blessing of my own health…my ability to do things I never had to do in my previous life…the blessing of financial resources which make the future less frightening.
I hope if you are reading this, you will count your blessings, make a positive decision to look at the glass as half full, make lemonade with your lemons and generally just stop and appreciate the gift of life whatever your circumstances. I choose to be OK today….but I still foolishly hope that Mr. Lewy will take a short vacation. Until next time, may you be blessed with family and friends who care about you.
It occurred to me the other day that I am forgetting my life as I knew it. You ask me, “How can that be?”. After all I have been married to my dear heart for nearly 27 years and at most he has been demonstrating the noticeable changes brought by LBD for the past 5 years. But it is true. I have to make a conscious effort to remember what our life was like 5 short years ago. My life which included frequent entertaining, large holiday parties, many church activities and a husband who dealt with all the finances, computers and printers, home repairs, lawn care, boat care, oil changes, vacations and cruises. That feels like such a distant memory. We played marathon card game and tried to beat each other at Othello. We hiked up to 12 miles a day and loved to explore. I have to close my eyes and remember that just a few years ago we had several close sets of couple friends and many casual friends. Our calendar was full even though we had retired early. I drove my own car for engagements that were mine and to shop and run errands, but my hubby always drove when we went out together. He golfed 2-3 times a week and I had time to myself to do what I enjoyed….reading, chatting with friends, shopping, lunches out. I didn’t even know how to use the DVD player 5 short years ago and I didn’t think a thing of it. I depending on my husband for all the “man stuff” and I ran the house and a successful business which I sold and it left us with in a very comfortable financial position.
How my life has changed! Hubby no longer drives and we have gotten rid of his car. I drive everywhere unless I am with one of my daughters who always offer to drive because they think I need a break. I became proficient very quickly at managing the finances and dealing with vendors for home repairs and began to depend on my son-in-law for lawn care. We simplified some of the outside toys so there was less to maintain. I contract with a local marina to deal with getting the boat in and out of the water. I have become very proficient at technical things that I once thought were hopeless….I can find my way around my own computer, help hubby with his Ipad and manage to do most anything with the TV remote and DVD player. But how did the rest of my life change so quickly and so drastically? It doesn’t feel right to leave my husband alone for more than an hour or so. If he runs into a problem trying to do something, his anxiety escalates if I am not home. I quickly run out for groceries and he rides along on all other errands. He isn’t at the stage where he would be comfortable with outside help. For now it is me who watches over him, makes sure he take his meds, schedules his doctor appointments, assures his environment is safe and comfortable and transports him where he needs to go. Many of our friends have disappeared from our lives either because of distance or uneasiness in dealing with someone with dementia. Some family have backed away as well. It is difficult to make new friends at this stage and while my hubby is in this condition. Travel, strange situations, unknown places all cause his anxiety to sky rocket. He is most comfortable at home with me at his side. We go to church to worship, but do not participate in other activities because of his anxiety. He feels comfortable with a few close family members and friends coming to visit, but much more than that is difficult and he feels best in his own home.
I am truly not complaining. I have often said I am the perfect person to become a spousal caregiver. I am a nurse by training although I did not practice clinical nursing for long and I am not the type of person who is driven by a need to be in the midst of social engagements constantly. That being acknowledged, I do sometimes feel isolated and think how strange my life is compared to 5 years ago. I am a big believer in keeping the caregiver healthy and I try to do that…healthy food, exercise, anti-depressants for me, counseling when I need it, support groups…..but what I really want if I am truthful is my previous life back. I want to plan a dinner party for 8 friends and have my husband be the perfect host as he always was…refreshing drinks, taking coats, demonstrating impeccable manners. I want to quit managing the finances….not because it difficult, but because I am tired of it. I want to say “Honey, will you set up the DVD” and go to settle down and find it ready to go. I want to walk into the garage and get in the passenger side of the car and have hubby drive us to the movies and dinner. I am realistic. These things will never happen again. LBD is progressive. I see it progress almost daily at times. My brilliant husband with a mind for business now makes lists upon lists of TV programs….I don’t understand why, but I don’t discourage it because somehow it is comforting to him. There seems no way to hold Mr. Lewy at an arms length. He is a dark and sinister hitchhiker who has changed both of our lives forever. We find that hubby needs more drugs to keep on an even keel and even with increased Namenda and Aricept, I see him making simple errors as he tries to be helpful to me.Our only choice is to make the best of the hand we have been dealt. We consistently try to find joy in the small things of life and try not to dwell on those less joyous parts of life. We understand our limitations and try to make life as meaningful as possible within those limitations and we are blessed with 2 daughters who would do anything humanly possible to make our lives easier.
In closing today, if you are reading this as a caregiver, accept help anytime someone asks you if you need it. If they ask what you need, suggest that they take your spouse or care receiver out for lunch or a ride to give you some quiet time. If you are not a caregiver, but just an interested reader, stay in touch with friends who might be in similar situations. Don’t abandon them because you don’t know what to say to a patient with dementia. A patient with dementia still wants to be part of a life which is rich and diverse. They want you to ask how they are and truly listen. If everything else seems just too overwhelming, send a card with a note, bring a dozen muffins or cookies and sit and have a cup of coffee. Ask if the caregiver needs help with any tasks you are capable of doing. Perhaps simply pat the caregiver on the back when you see them rushing through the grocery store and ask them how they are doing. Chances are they are seldom asked how they are doing as the concern is always on how their spouse or care receiver is doing.
In closing, try to enjoy the small things in life that have the potential to bring joy into your day. We saw two eagles doing a mating dance over the river today and it made us smile much of the day….they were so graceful and beautiful. We had a second cup of coffee this morning which was absolutely delectable as we watched the snow fall outside our window….yes snow in mid-April. As the caregiver,try to use kindness whenever and with whomever you can and try to smile more. I find giving a smile and kindness most certainly comes back to you two fold. Keep the faith, my friends….I can do this and so can you. Like me, you will sometime yearn for days from the past, you will be weary of the physical and emotional strain and will find yourself increasingly more isolated if you do not make a conscious effort to get out. We may all need more help than we would like to think, but we can do this. It is holy week and across the world people of faith will be celebrating the joy of new life and the power of the resurrection. Enjoy your Easter Sunday however you spend it and know that you are now or may become one of an enormous contingent of caregivers. As we unite and begin to know each other better, I believe we will draw strength from each other. May you be blessed this week in all you do.
Despite some fears and mental reservations, we decided to go on vacation for a week in Florida. We found that we were longing for warm temperatures and sunshine after such a cold, dreary, snowy winter. Knowing we couldn’t travel a long distance alone, we enlisted the help of our daughter, Sarah and her husband Michael and with them their three little ones ages 8 down to almost 3. Flying first class nonstop made the flight painless, having our son-in-law driving the rental van and our daughter navigating kept that stress to a minimum. The three grandchildren kept the mood pretty cheerful and excited. We had hoped going to a very familiar resort in a familiar locale would keep our stress at a minimum and we hoped Mr. Lewy would miss his flight! After all, this was a low stress trip….maybe he would stay sleeping in Wisconsin until we returned.
The resort (The Don CeSar) on the sugar white beaches of the Gulf of Mexico makes spoiling their guests a priority. Whether ambling on the beach or lying by the pool or sitting in a lounge, the staff are constantly there to make your stay pleasant. So how did hubby do? Were we able to sneak off and leave Mr. Lewy home? Nope. He was very much present during the entire vacation. He maintained his hold on hubby’s balance…..in fact hubby stumbled and stubbed his toe (actually toes, plural) and they are presently a lovely shade of lavender. He also showed himself during moments of stress…like ordering dinner. Suddenly the word finding problems would be so evident….hubby couldn’t get a word out! We had a toilet overflow emergency where the bathroom suddenly had about 3 inches of standing water on the floor and it was flowing into our room and the hall due to Mr. Lewy. But the staff of the hotel took it all in stride coming up at 9:30 PM and doing clean-up with a cheerful attitude. I could tell that even with every need my hubby had being fulfilled by someone else, the difference in routine gave Mr. Lewy just the opening he needed to latch on tightly and dig his long nails in tightly.
All that being said, we had a wonderful time in a great resort with the perfect amount of time alone and time with the grandchildren and their parents. Yes, hubby was more disoriented for a day or so after we got home. He had some problems remembering how we had gotten to the airport to begin our trip. But the warmth of the sun and watching our little grandchildren play in the pool and ocean made it worth the expense and hassle, according to hubby.
Will we go again? I can’t say. We saw our movement neurologist and our neuro-psychiatrist today. They confirmed that hubby needed to try increasing his Namenda dosage as we have not seen the cognitive improvement we had hoped for. Both physicians are anxious to see the results of hubby’s sleep study in May due to the multitude of REM sleep disorders that hubby is having. But did they think going on a low stress vacation was a good idea? Absolutely! No traveling alone, they reminded us. We can not risk having hubby in a strange environment away from family should I become ill or otherwise incapacitated. Will we go on vacation again? I can not say either yes or no with authority. It depends on how hubby feels physically and how he is doing cognitively. This may well have been our last vacation. If it was our final vacation, we are grateful that we were able to take it with each other and with our daughter and her family. It we decide to try another trip, we know that either one daughter or the other and their husbands would be happy to accompany us. If we believe another vacation would be detrimental to hubby we will not go, but we will enjoy wonderful memories of this trip.
If I am honest with myself, I knew Mr. Lewy would be with us. He is ever present in our lives, but he does not totally control us. We still enjoy friends, family and each other. Mr. Lewy does limit our activities when he is on a rampage, but even then we can find the joy in life. Because whether life is beginning or ending, there is joy to be found. We find joy in the smell of flowers, the touch of a child, a hug or kind touch, a special note from someone who cares, the feeling of sun and the breeze on our face and the knowledge that a greater power guides and protects us. Our faith in God and our love for each other sustains us. We choose to find joy in this life no matter what it may bring and we continue to make lemonade with the lemons (and lives) we have been given. Wishing each of you the joy of a life well lived….from beginning to end.
This morning began as have several in the past year. Whap! Wow! No, I am not in the midst of a superhero movie! I am awakened by a sharp slap across my chest this morning. I immediately shout “Stop hitting me!” My dear hubby says “I am dreaming! There is a bearded intruder on the deck and I saw him out the bedroom window”. Strange that he knows he has been in the midst of a vivid dream. I try and stop him from getting out of bed, but he gets slowly up and shuffles to the large window beside our window seat and pulls up the shade. The drop from our window to the ground below where our walk out basement is located must be 12 or more feet. There is no deck access or deck near our bedroom. He knows this, yet he feels obligated due to the life-like quality of the dream to look out the very window “where he saw the intruder”. These episodes are becoming more frequent. My sleep is more frequently interrupted and his is as well. What to do? I don’t want to sleep in another room. I want to hear him if he needs me…twin beds?…..I suppose a possibility….but the intimacy of a gentle pat or caress are more difficult in twin beds….bedsides then he would have two sides to fall out of! More clonazepam? I hate to see him take more of this drug and be more groggy the next day. We have a sleep study “assessment” scheduled in a few weeks to see if he would be a suitable candidate for the study. I wonder what it could possibly gain us? I sleep with him every night. I can tell you how Mr. Lewy, the dark and sinister hitchhiker visits nearly every night. He brings with him an absolutely amazing bag of tricks he reserves for the darkest of the night or an early morning wake-up call. Jerking, kicks, moans, muscle cramps, verbal shouts, slaps, punches and worse yet, sometimes Mr. Lewy even throws dear hubby out of the bed! Good thing we have made his side of his bed a “safe zone”…..no nightstand…no sharp corners…..nothing to injure my darling when the hitchhiker makes him “go bump in the night.”
It has been a long, snowy winter. I need spring to arrive early this year instead of enduring a prolonged winter. I have been trying to eat healthy, exercise with hubby, enjoy the beauty of the landscape out my house of many windows. I have listened to more music, counted my blessings, burned more scented candles, played with my grandchildren, concentrated on the good things in my life. I have taken my anti-depressants, shared my sadness with others. I have discussed frankly with hubby, my daughters, my siblings and a support group the course of this disease and it’s effect on him and ultimately on me. I have continued my battle to try and hold off the dark and evil hitchhiker whose hands with long nailed fingers grab onto our train. More often lately despite my resolve, I feel sadness as I recognize the consistency of symptoms our hitchhiker brings in his bag of tricks. Short time memory issues are beginning to be more prevalent for hubby…following a movie or television show he enjoys has become more difficult. Setting the table is more difficult once again. He asks me more questions about things he has known in the past. I am more and more uneasy leaving him alone even for a short period of time. The hitchhiker may lead me to believe this is going to be a great day which is nearly symptom free only to interject a period of confusion on hubby when I least expect it. The Aricept and Namenda seem to ward off the symptoms less effectively.
I ask those who believe in a higher being of any sort to pray for me and for hubby. No, don’t pray for healing….please pray that we can continue to keep our shared sadness from invading every corner of life. Please pray that this bumpy, journey can be traveled with moments of boundless joy by both of us. Pray that those who do not understand our journey will somehow be enlightened. Pray that we can travel this journey with grace and thankfulness for our blessings. Please pray that I take my own advice to heart. Pray that I continue to choose to be “OK” and that I stop and smell the roses for a moment each day. Pray that I continue to recognize the special relationships I have been gifted with in my life….my dear hubby and my dear children and their families. Few people are graced with these type of relationship and I am indeed blessed to have them. Pray that I never let bitterness invade my soul. I believe that bitterness is the ingredient that always leaves an unwanted spot on your soul and a taste you can never rid yourself of. For above all other things, I truly believe in my heart of hearts that this is my purpose in life…to lovingly and gracefully care for this dear man who is needs me to gently usher and guide him along this journey. I have the knowledge, I have the desire, I have the love….and I know with God’s help I will have the strength I need to ride along on this unwanted journey with the love of my life.
I sometimes think we should have been an advertisement for Lewy Body Dementia identification. Honestly, my hubby has so many of the risk factors or early indicators including such things as REM sleep disturbances that I think we should be poster children for Lewy Body Dementia! Over 10 years ago (maybe closer to 15 years ago), I began to notice him talking more in his sleep and at one time he flew out of bed while “catching a basketball” in his sleep. High cholesterol had been a problem, he has had almost no sense of smell for years, he has had problems with depression and anxiety for years and a bevy of relatives on both sides of his family with diseases in the same spectrum (Parkinson’s, Restless Leg Syndrome, Alzheimer’s Disease). In addition, although he has never had a visual hallucination, he has often heard things that no one else heard (barking dog, rock and roll music) which is called an auditory hallucination. For the past several years our daughters and I have complained that he couldn’t hear well. The TV was always louder than we found comfortable and he seemed to be uncomfortable understanding conversations in crowded venues. I finally convinced him that he should see an audiologist. Yes…you guessed it. His hearing was below normal in every single tone from the lowest to the highest in both ears. Hearing aids ordered (ouch $5200) but well worth it if we can listen to the television at a normal volume and he can visit with others in a crowded restaurant. And yes, you guessed it. For some reason dementia patients have a history of hearing loss. The connection? Unknown, but it has been studied and identified as putting a person at higher risk for dementia.
So what are we doing these days to keep our life meaningful and to hold Mr. Lewy at bay? It takes a lot of work….physical therapy 2-3 times a week and on ALL other days we go through the entire exercise program ourselves. Limiting situations which increase anxiety. We find that most people have problems understanding how anxiety exacerbates the symptoms of Lewy Body. If you can’t understand, simply be willing to take my word for it. An anxiety producing situation brings a deteriorating ability to find words, participate in conversations and think clearly. What is an anxiety producing situation? It can be any situation where he finds himself “put on the spot”….having to simply order off a menu can be difficult if it is an unfamiliar restaurant. Even family members can sometimes be anxiety producing if they have a history of critical or unkind behavior towards him. Trying to eat healthier….always….and he does love sweets. I try to always offer apples and oranges and limit the M and M’s and cookies. Reminding him to stay hydrated, encouraging him to work on puzzles designed for patients with dementia, making sure bedtime is a ritual. Warm shower, light snack, quiet conversation, cool bedroom.
Comfortable clothing, temperatures comfortable….turn up the heat or the fireplace is his hands are cool or turn on the air conditioning if he is too warm…..temperature regulation is one of those problems that often accompany folks with Lewy Body Dementia and is considered a problem with autonomic function. It is a constant job for the caregiver. Anticipate, be ready to improvise, try to be ready for any situation. Carry extra things you may want with you in the car anytime you are more than a mile or two from home. Medications, snacks, water, paper towels, garbage bags. We have bought the deluxe walker that we will probably need at some time in the future…..we have created a safety zone on his side of the bed which will allow him to fall out of bed and not hit any sharp edges. And now each morning I help him put on his hearing aids and each evening at bedtime, I take them out for him and clean them as his fine motor skills no longer allow him to work with such tiny brushes and wires.
All these things being said, it seems we are muddling along quite well. He tells me that he thinks about his death every day….wondering when he will slip down over the ledge and be unable to get back to me. He is very aware of his cognitive decline and the need to stay active and engaged. He knows that the day will come when he will no longer be conversant and mobile. He hates the thought of being dependent on me or others, so he fights the cruel hitchhiker, Mr. Lewy along with me. Each hour, each day, each week, each month we continue to push Mr. Lewy back. It is exhausting at times…..just anticipating the future. But although it is part of our life and we need to be constantly vigilant, we can’t allow it to be our only focus. Our grandchildren, our children, friends, our faith, our relationship with each other, these are the things that mean the most to us. We must focus on maintaining and enjoying these things as well. For life is not meant to be a sour lemon, but rather to be the sweet nectar of the lemonade that we make with those lemons.
We encourage you to evaluate your risks and change those things you can. And more than anything else, enjoy your relationships and count your blessings. Make lemonade out of the lemons life hands to you. Be well and enjoy life whatever your situation.
lewybodyjourney 