Skip to content

Post holiday musings

We approached the holidays this year with a certain sense of apprehension. Last year, Christmas was difficult even though we were surrounded by supportive family. We had not gotten the LBD diagnosis, but thought it was the likely culprit for the problems hubby was experiencing. All we could think of is what would this mean to us. The tears flowed constantly, it seemed. Would this holiday be better?

This year, however, we approached Christmas and New Years with the knowledge that LBD is indeed a part of our lives. We must deal with it as best we can and be proactive in controlling our own lives as best we can. We simplified decorating as massive amounts of decorations require both putting up and taking down! And watching hubby try to fit a small lighted snow village house into a Styrofoam box, is not pleasant….he has lost much of his abilities related to spatial relationships. So the entire snow village remained packed away. The girls may divide it up and enjoy it whenever they like. No more huge trees for us. Instead, several small artificial trees that I can handle myself. Do I miss the days of the 10 foot tall Douglas Fir…..certainly! But is it festive with several smaller trees? “yes”. I baked less, planned less elaborate meals and let the girls totally plan and prepare New Years Eve. What fun we had enjoying their efforts.

It has become harder to buy gifts for my husband, but it has never been easy. Surprisingly, he seemed pleased with everything he got. Our youngest daughter helps him with shopping and wrapping my gifts so that eases his burden. He gives her the credit card and takes a look at her suggestions. I think he probably trusts her judgment completely, but I pretend at least some of the gifts were his idea! I buy and wrap for the rest of the group and do most of my shopping online. So much easier to buy without approaching the mall and wrap as thing are delivered. Cards….just a note. No Christmas letter this year. Those who care, know our situation and understand. Those who don’t, don’t matter.

We attended Christmas Eve services at our church and elected to go to the early service which was child oriented. It was beautiful and suited us just fine. Easy to follow…simple message….simple beauty…a reminder of simpler days. The message and music need not be complex to carry the poignant story of Christ’s birth. A simple dinner followed and we were pleased to just be together.

Would I lie if I said this holiday season held no tears? Indeed, I would, for tears did flow…but not uncontrollably and not frequently. We do acknowledge and accept that Mr. Lewy has a gained a slightly tighter hold on my husband. He has been having increasing problems with speech, increasingly vivid dreams and some increased issues with short term memory. His neurology team has added Nememda to his drug regime in addition to his Aricept. Has it helped? I am not sure, but at least we feel like we are trying options which may help. The Parkinson type symptoms continue, especially issues with gait and balance. He has started back to physical therapy to reduce his fall risk which has risen again to 50%. The risk of fall constantly frightens me. We have created a “safe zone” on his side of the bed so that when REM sleep disturbances cause him to act out his dream, there is no sharp edged nightstand or light to knock into if he catapults out of bed. A comfortable, fabric chair has been placed beside the bed and if he takes a dive into it, very little physical harm will be done.

Do I still hate the hold Mr. Lewy, the sharp nailed, slimy creature that I picture has on our lives? Absolutely. I can see Mr. Lewy digging in for the long run. He remains an unwelcome hitchhiker on our journey. On some days, I feel like he has left the train completely…..and other days I feel like he has bought a ticket for himself and a friend. I try to pry his hands from the window of our life, but with little success. Such is the nature of this disease. Up and down….variable hour to hour…day to day…week to week. Some days are almost like those days we shared years ago…..but some days I am flabbergasted by the amount of help my husband needs just getting dressed and ready for the day….his confusion more evident, his memory less reliable. But for the most part his problems are most prevalent in the area of executive function. He has difficulty organizing any project, but will work for hours attempting to organize a task which would take you or me 15 minutes. He seems quite content, however. He is surrounded by love from our two daughters and their families and my love. It is palpable in the house. We keep many photos on display of members of our family and I catch him standing looking at them almost daily. He has fallen in love with our little granddaughter and looks forward to the day each week she spends with us. She is only two and a half but she already seems to understand that “Pop” is a little different. She is more gentle with him, pats him frequently and will often just snuggle up and sit on the couch with him sharing a snack.

What will this coming year hold for us? I do not know. I do know I will care for him with love and deep devotion as will our two daughters and their husbands. We will do what is necessary to make his life meaningful. We can not beat back Mr. Lewy indefinitely. But we have made our plans together for how we will deal with the changes he brings. We pray for the pleasure of the good days ahead and are prepared for the difficult days we know will be intermingled. In the meantime, we are grateful for our blessings and count them daily. May your life be blessed as well. Take the time today and every day to identify the blessings in your life. You will feel better because of it.

Thankfulness

We celebrated Thanksgiving with two of our daughters, their husbands and 3 grandchildren. Although we have much to be thankful for, I really noticed the change from last Thanksgiving. My hubby is more frail, less physically stable on his feet, struggling again with word finding and if interrupted (and sometimes spontaneously) forgets his train of thought easily. Frustrating for him and heartbreaking for the rest of us. As is often the case with Lewy Body Dementia, he is very cognitive of his deficits and can see his own decline.
I notice he rarely participates in a conversation and tends to sit quietly and listen. Most of the adults are aware that if he begins to talk, it is best to let him fully make his point before asking a question or the point may be lost completely. I have seen a marked changed in his fine motor skills and he is more often to leave the table with food on his clothes or a scattering of food on his placemat or the floor around him. So difficult for a man who has always had impeccable table manners. These things aside,I decided not to bemoan the changes in his condition in this post however, but to list 10 things I am thankful for:

1. I am thankful for my husband regardless of his condition. I don’t regret our life together for an instant. He has always been a gentle man and continues to be gentle, generous and loving. I was meant to be his wife….I believe that. I know without question that I am the best person to care for him at this point in our lives.

2. I am thankful for my two daughters and my son. My oldest daughter lives closest and she and her husband do much to ease the day to day burdens and give me respite now and again. My son-in-law takes care of our house and grounds and does so with a kind, gentle manner. My younger daughter lives about 3 hours away and calls to check on “Daddy” almost daily. Whenever she and her husband are able to visit, they provide much needed respite and assistance as well. Both girls love my husband unconditionally and would gladly be here anytime I needed them. My son lives in NY and is less available to visit, but he stays in touch frequently and his calls seem to come at the times I most need to talk.

3. I am thankful for my three grandchildren. They are funny, intelligent, loving and accept their grandpa for who he is. They consistently brighten our days. The youngest one, our Granddaughter Eme is able to bring a smile to Grandpa’s face no matter how tough his day has been. As she proclaims as only a two and a half year old can, “Eme to the rescue” with a jump and flinging her arms in the air. Thank you to my daughter for giving us the gift of time with our grandchildren! Eme has come to the rescue many days when our moods have been low and the tears at the edge of every blink of our eyes.

4. I am thankful that I have sufficient financial resources to do what I need to do. I do not struggle financially as some others do…wondering how I will pay for medications or bills.

5. I am thankful for my faith. It keeps me grounded. It reminds me that life does not revolve around me and my problems. It reminds me to give generously of those gifts I can give, be they financial or gifts of small kindnesses. My faith reminds me that life is not over when death occurs, but that Christ died so that we might have eternal life. With my faith, comes my church family. Through the years, many of my church family have become as close as dear aunts or cousins. I am grateful for their love and support.

6. I am thankful I am cognitively strong and physically healthy myself. Yes, stress does a number on me, but I try and make sure that I take care of myself so that I can care for my dear husband. Living in an area with excellent health care has been a blessing!

7. I am thankful for my siblings. My sister and brother both keep in touch, understand my situation and pray for us. The best gift my parents ever gave me was the gift of siblings.

8. I am thankful that we live in a beautiful location with a home that we have adapted to be handicap friendly. We can watch the wildlife and the river. Despite missing our jaunts to the southwest, we have found our home on the river to be a lovely place to spend our time together. Watching the buck walk through the yard or the red fox, is delightful and the sunsets are spectacular. Being only 20 minutes from our daughter and her family is a blessing beyond measure.

9. I am thankful for good friends who stay in touch and remind me that they are here for me in word and deed. You know who you are. You write me notes and emails, you tell me that you pray for me and you offer to help me if I need it. You don’t become cross if I don’t immediately reply to your note. Thank you for understanding and continuing to support us emotionally.

10. I am thankful for support groups, be they online or in person whose members and caregivers share their stories, support each other and offer advice and prayers. Sometimes it just helps to be able to talk to someone who has walked the same journey you are traveling.

In closing, I must say that while I continue to recognize my blessings, I continually battle the dark intruder in our lives, Mr. Lewy! Try as I might, I cannot seem to derail him from our journey, but I pry his slippery fingers off the ledge of our window whenever I can. I fight Mr. Lewy with every ounce of my being. He will ultimately win this battle, I understand. He is the stronger, more persistent traveler on this journey. He will take home the trophy engraved “The Winner” But in the meantime, I will make his winning difficult as I light the scented candles, play the Christmas music and continue to care for my dear husband.

May you find blessings to count, my friends. May you be able to see the beautiful in the small things in life. May you stop and smell the evergreens and the roses. May you revel in the touch of a child and the love of family and friends. Happy holidays to you all.

Life as we know it or It’s always something

 

I haven’t posted in a while and I appreciate those of you who have sent inquiries asking if we are “OK”.  We are OK…..because we choose to be. It is a quiet, drizzling fall day….much what one would expect here in the Midwest. The high point of most weeks involves either watching our 2 year old granddaughter for the day while her Mom teaches or seeing one or more of our offspring or the grandchildren on the weekend.The days of watching the grandchildren run and jump off the dock and splash in the river are past for this year.  Our days seem to have taken on a quiet routine which revolves around routine tasks and attempting to keep hubby as pain and anxiety free as possible while still keeping him mobile. Dressing, stretching exercises, BIG exercises, back massages, more stretching, medication administration and repeat!  Even though I spend almost every moment with him, I can see the decline over the past couple of months.  His stiffness is so pronounced that he jokes about needing to be wheeled around on a furniture dolly!  We have purchased him a quad cane and walker, but so far he hasn’t needed them although that time is clearly not far off.   

An unexpected, asymptomatic episode of urinary bleeding sent us through a new bevy of tests.  Fortunately no explicit causes could be determined despite CAT scans, cystoscopy etc.  Good news, but a new worry lurking.  Since hubby’s father had bladder cancer it is naturally foremost in our minds.  “See you in 6 months” for another cystoscopy the urologist cheerfully tells us.  Add one more doctor to the arsenal of specialists we now see for diagnosis and treatment….endocrinologist, urologist, internist, neurologist whose specialty is movement, a neuro-psychiatrist, oral surgeon, the list seems to expand weekly. 

Cognitive skills continue to vary sometimes from hour to hour.  Last winter before LBD diagnosis and beginning on Aricept, hubby’s cognitive skills had nose dived.  Simple tasks like setting the table were too difficult and complex for him.  After beginning the Aricept we noted a pretty remarkable improvement, but I am beginning to see those skills deteriorate again.  Any complex task or “executive function” is difficult.  I have watched him working on a simple list of TV programs he wants to watch this fall for 3-4 weeks.  List upon list….none organized in a meaningful way….but he keeps working on them and I continue to encourage him in any way possible to do those things he can.  He mentioned something to me a day or two ago that made me sad.  He said to me that our conversations are less frequent and animated these days because our sphere of activity has decreased so markedly.  He is completely right.  We find planning is difficult even from day to day.  We are currently struggling with marked back pain and after completing a physical therapy regime, now do stretches, heat, ice and massage at home.  We used to spend a large amount of our time discussing where we wanted to travel…..what cruise would we take next…..who would we invite to dinner…..what card games we would play…..what hikes we would plan.  Only 18 months ago we would hike 12 miles and come home, shower and go out to dinner….. now a decision on what to order when eating out has become an ordeal. At this point, a walk of a couple miles on a flat surface is all he can tolerate and going out to dinner has become less appealing.  Crowds, decisions, unfamiliar circumstances, travel, riding long distances all are out of the question.  We both miss our southwest home and travels, but we acknowledge that it was the right decision to maintain just one residence.  Routine and lack of change are the best for him.  He functions best in an environment where he totally at ease and familiar.

How am I doing some of you have asked. I am lonely for the life we used to have, but I am glad to see the remnants of sparkle come into those green eyes from time to time. I still wake up some mornings and can’t believe where life has led us.  Watching his struggle with such overwhelming stiffness and helping him dress makes me sad.  He has become so dependent on me that it is frightening to leave him for more than a quick run to the grocery store.  I seem to have become his lifeline.  I help him with all manner of things from drying after his shower to finding the app he wants on his Ipad.  I cajole him into doing one more set of exercises, I remind him of simple tasks he can do and I try to tempt his lagging appetite with anything he loves to eat.  I know he would be lost without me, so I try to stay healthy myself and talk with my girls about how they would need to step up if something should happen to me. I know he would be in good hands with the care of our daughter and her sister who lives nearby.

His short term memory remains quite good. He certainly knows what he likes and doesn’t like, who people are and what he is capable of doing. He actively chose to work on revisions to important legal documents like his POA and HCPOA. He clearly was perfectly capable of making those decisions himself and chose different language in his than I did in mine. For example, he would like his HCPOA to consider experimental treatment if it is available. In contrast, I say let me go!
In any event, Mr. Lewy, the hitchhiker is here with us for the long haul. He makes his presence known as I actively slap his hands and try to derail him. It is our life now….and we cherish every day despite the difficulties. We pray that we continue to handle this with the grace and faith that we choose to guide us. I say with genuine conviction that I am thankful to be married to this remarkable man….it was truly my lucky day when he asked me to marry me.

Fall or Falling around the corner

It has been a busy last month.  Preparing our southwest home for sale, traveling to New Mexico and back and dealing with the myriad of things that go along with a major home sale.  Ugh!  Fortunately the sadness was mitigated by the presence of our daughters who added both an element of efficiency to the process and a joy in simply being able to be with them for a few days and by our good friends in the southwest who gave us emotional support in buckets!

Now that August is upon us, it is beginning to feel like Fall here in the Midwest.  The air is crisper in the morning, a few leaves have begun to change color and even a few have fallen.  Sadly my flowers seem a little less enthusiastic as well.  Stores are running back to school specials and sweatshirts are apparent on kids and adults alike.  It feels odd to me not to begin preparations to go south.  Instead, I am beginning to think of fall activities we can do together and the prospect of making applesauce and apple pies for the freezer….it has been a number of years since I have done that.

Hubby continues to do relatively well.   His cognitive state seems pretty stable although word finding has begun to be more of a problem again.  The “Big” Physical Therapy program has helped with his movement, although it is a constant process.  A battery of exercises must be done daily and repetition seems to be the key to “retraining” the brain to assist with bigger movements.  Bigger movements mean less shuffling and hopefully less risk of falling.  Despite our efforts to maintain a safe environment and minimize the risk of falling, my husband experienced his first fall last week.  He has been complaining all summer of increasingly feeling “woozy”, off balance and just a bit light headed.  No new medication to blame and basically we understand from our neurologist and our reading that it is part of the disease process…..Mr. Lewy at work.   The fall happened while hubby was alone in the garage and I stepped out for a few minutes.  No lasting harm done, but hubby now sports two large (one gigantic!) ugly blue-purple bruises and I sport a renewed fear of his falling.   I find myself watching his every move like a mother hen while attempting to give him some degree of independence.  We have had additional grab bars installed in our new “roll in” shower and a gate that locks on our stairway, so he doesn’t take a tumble down the stairs in the middle of the night. 

I find myself lying in bed at night awake, imagining what Mr. Lewy has in mind for us next.  Ah….such an unwelcome and despicable hitchhiker!  I tell myself, “day at a time, day at a time, day at a time.”  “Deal with today….be watchful…be prepared.”   Sleep eludes me many nights….my physician changes my medications….watches my blood pressure and tries to help me with my physical health.  My counselor attempts to calm me and help me problem solve.  My girls give me never ending emotional support and help. My husband offers me constant and unconditional love.  Despite it all I feel anxious and uneasy as a fall may be around the corner….a crushing fall…a life altering fall. 

 I think that I have done everything I can.  I am trying to stay healthy, have our home prepared for the future, have our legal and financial affairs in order.  Why then does this anxiety persist? Why do I visualize this frightening, slimy hitchhiker with his claws firmly in my life?  Why do I continue to wrack my brain trying to think of ways to fight him and his companions off when I know they are inevitable?

Once more I tell myself, it is up to me to choose to be OK.  To do what I can, to accept what I can’t do and to maximize my life with my husband.  To accept that Mr. Lewy is an uninvited guest and will not be leaving us and that it is up to me to figure out exactly how to live with him.  I need to make peace with Mr. Lewy……I am the ultimate control freak, I guess.  I thought I could outwit this hitchhiker….I could change destiny, I could make it go away, change the progression, keep my life on a steady course with my beloved.  No, I cannot…..the best I can do is to make peace with Mr. Lewy and choose to be OK.  So, I close another post and I try to appreciate those small blessings.  The feel of my husbands hand in mine, the presence of family and friends and the beauty of the earth…..for I am not in control of this life.  I must simply live it to the best of my ability and with faith that we will be OK wherever and however this journey ends.

Whew! Fatigue, anxiety and daily life

It is an uncanny thing to realize that life is truly unpredictable.  Sometimes, I feel like we are in relative control. If you have followed this blog, you know I want to read and understand everything about Lewy Body Dementia, control what I can, effectively deal with those things that can’t be changed. At times I think we have this thing called “Lewy Body” figured out.  We can do this, we are doing this, we are good!  Other times, I wonder how we will get through this journey unscathed or even partially whole. We are both determined to do our best, keep the faith, stay as healthy as possible and count our blessings. But even with the best intentions, will we be able to fight through the fatigue which is a daily factor for my hubby in order to regularly and faithfully continue with the “BIG” program of Physical Therapy that he is participating in?  It is not only a huge task for him, it is a big task for me as well.  More walking (which is good), an hour or two spent daily in practicing the repetitious exercises, keeping track of medications, finances, shopping, cooking and serving only healthy food.  Fitting in time for me to see the counselor (yes, I am a believer!) and now traveling by air to prepare our southwest home for sale and deal with all the issues of packing, sorting, pitching, giving items away and dealing with the feelings of grief and sadness that accompany those plans.  I can feel the dark edge of anxiety creeping into both our daily lives.  We both fight it back, try to talk through it and try to enjoy the day that we are in.  Anxiety seems to come at night for me when all is quiet and he sleeps beside me.  I feel every REM sleep disturbance, I hear every murmur that he makes, my heart starts to beat more quickly and I feel anxiety caused by the hitch hiker Lewy Body invading my quiet space.  Yoga breathing, Yoga breathing, concentrating on blessings, don’t get up, don’t read….enjoy the quiet….yoga breathing, yoga breathing.  I find myself drifting back to sleep only to be awakened by the sudden jerking and shaking of hubby’s REM sleep disturbance.  Try that again…….ahhh….I am drifting back to sleep.  Suddenly I look at the clock and it is 7:30 am.  I have made it through the night.  The anxiety has been pushed back again.  I am doing better. 

Give me grace, dear Lord to make it through another day.

Many days seem to repeat themselves….some in good ways and some in not such pleasant ways. Phone calls from our 2 daughters always help and visits from them seem to work miracles. Hearing “Where Pop?” coming from our only grand daughter as she searches for her grandpa is always welcome. She is persistent in the way only a two year old can be. She is intent on finding him, hugging him and showing him her newest boo-boo or pretty hair cut. The distraction of a good movie, a call from my son, friends, a funny news article or a pleasant e-mail message are always welcome and have the ability to change the tone of the day and fight back the dark hitch hiker, Mr. Lewy. For a moment or an hour, we feel like we have won the battle.

But then there is the pain and muscle tightening from Mr. Lewy that seems to worsen at night or after a period of inactivity and pain increases hubby’s anxiety…..I try to see that hubby moves as much as possible, but I can’t make him do exercises and walk all day. He needs to simply rest and regroup sometimes. Periodically he looks so tired that I know he is cooperating only because he knows I want him to….he knows that staying active is in the best interest of both of us….but he is so fatigued at times that it makes me realize that this is a tremendous effort for him.

What to do? Continue the plan. Strengthen our faith and spiritual life. Count our blessings. Deal with the day I have surrounding me and the night ahead of me. I will try not to dwell on the past except for the beautiful memories it holds. I won’t play that “what if” game which is destructive to body and soul. I will try not to worry excessively about the future. We have secured our finances, have our legal work in order, our home has been retro-fitted for a handicap individual. We have found excellent health care providers and a health care system we trust and respect. We are doing our best to stay as healthy mentally and physically as we can. Beyond that we simply fight back Mr. Lewy in any manner we can. We pry his icy, thin fingers from the rail car he is clutching on our journey, as he darkly whispers “I’ll be back”…..and we know he will. Someday he will come and stay….and the only way he will leave is when he takes my darling with him. Until that time, beware Mr. Lewy! I have chosen to make you my enemy. I have chosen to fight you until you spirit away the physical body of the man I dearly love.

Today, I choose to enjoy the sunshine, the roses in my garden, the embrace of my husband and the life I have been given. Take that Mr. Lewy! You have no hold on me today….I will deal with you again tomorrow.

Reality and Acceptance

It has been nearly a month since I posted and I have often felt the need to write, I just have not found the time. Being home in Wisconsin has brought many doctors appointments including the much anticipated evaluation for my husband at the Memory Clinic. I could write lengthy paragraphs about the process, procedures and our reactions, but suffice it to say that we were strangely comforted by a caring neurologist who said, “Not every single symptom of Lewy Body Dementia is present, but I believe that is what we are dealing with. Every patient is different, every person reacts differently and every course of illness will be slightly different. The only way we will know for sure if you have LBD, is at autopsy (cheerful thought!) so for now that is what we will assume you have and how we will move forward. I want you to enjoy what you can of your life and let your health care providers help you enjoy your life.”

Wow! I sit in amazement. We have been listened too. We feel strangely appreciative of a horrible diagnosis. We wish that it was a simple Vitamin B deficiency, but we knew it wasn’t and in fact in our heart of hearts we both knew it was LBD. For we have felt the intermittent nature of LBD….the up days, the down days, the overwhelming fatigue, the sudden confusion followed by perfectly lucid hours….the anxiety over small changes in routine…the ability to cope well with routine and to be overwhelmed by changes in routine. We have felt the black claws of Mr. Lewy attach himself to us, an unwelcome hitchhiker who drags himself along on this journey despite our best efforts to push him from our train.

OK, what now? How do we best deal with illness, preserve the character of our marriage, continue some autonomy for my husband and enjoy our family? The neurologist suggested an intensive physical therapy program called “Big and Loud”. Wow! I can see some positive changes after only 2 weeks! It takes commitment though….for me as well as my husband. There are visits to PT 4 times a weeks and exercises which must be done at home faithfully twice a day. It is hard work, but it brings results.

I began seeing a therapist a few weeks ago to help me deal with the stress of caregiving and extended family discord. I was not a believer. I only went because my dentist insisted and my primary care physician agreed. I could do anything….in fact everything! There was nothing that I was not able to do independently and with ease. I was known as a successful career woman, a good parent who raised smart, well educated children, I loved my husband, I kept two beautiful homes, I hosted every holiday. Yah? So why the bouts with TMJ? Why the insomnia? Why the hypertension? Why the weeping nearly every day? Why did I need an anti-anxiety and an anti-depressant? Well, I would see the therapist and give it a whirl. It couldn’t hurt, right?

Let me begin by saying, I have been converted! What a relief and what a comfort the therapist has been. She has helped me validate my feelings, sort through my confusion on family issues and develop strategies to speak to others about behaviors that need to change if they wish to continue to be part of our lives. She has helped me to verbalize and truly accept that my biggest priority is caring for my husband and keeping him as healthy and happy as possible, followed by caring for myself so that I can be as healthy and happy as possible. She has helped me see the need to let go of hurts from the past and concentrate on the future. I need more than ever to take care of myself…. to be able to collect myself and become prepared to someday be an independent and whole woman again….no longer a caregiver. Parenting and grand-parenting remain important to me even though my children are adults. I have to make time for those important people so that when this journey is over, we still have the close relationship we have today. I became a believer. I cannot do everything by myself. I cannot be perfect. I can accept help….I can ask for help. A dusty house is less important than a walk with my husband or a story about a squirrel family that has long been a tradition to my grandchildren.

So now what is reality? Reality is caring for ourselves and maintaining a close relationship with those who want that relationship with us. Reality is fostering our faith…challenging our minds…simplifying our lives a bit…planning our legal and financial future carefully. Part of that simplifying will be changing our winter routine. We will sell our house in New Mexico and settle into the Midwest for the winters. We know it won’t be easy and it comes with sadness. But the stress of travel now outweighs the enjoyment of going south. The stress of being alone far away without our girls close by in the case of a medical emergency is just too much to contemplate. So like others before us, we will stay close….perhaps try some community volunteering, enjoy our daughters and their families in the winter, bundle up, watch it snow,read our Kindles and watch old movies.

Reality is not what we had once envisioned in our golden years. We had every possible blessing, we thought. Financial security, loving children, health, faith and abiding love for each other. But we now choose to accept our new reality which has only one change….health. We will continue to shove Mr. Lewy off the train every chance we get. We have chosen to accept this reality together and to be OK with it. We will find beauty in the seasons despite our shivers and we will be thankful that we are truly blessed in many ways. Mr. Lewy….not such a blessing….but the love of each other and the faithful caring of our daughters and sons-in-law are blessings beyond description.

It is the 4th of July. Take time to celebrate with friends and family if you can. Light a sparkler. Be happy you are able to celebrate freedom and above all, look for your blessings amidst your trials.

Stiff and stiffer

Over the past few months I have primarily blogged about the issues of diagnosis, adjusting to a new life plan, cognitive issues and changes in my role as a wife and marriage partner.  Today I thought I would take a moment to talk about the physical changes that are present and “creeping into” our daily lives.  Keep in mind that this is just our experience and may not pertain to everyone who has Lewy Body Dementia.

When I ask my hubby how he is doing in the morning, he often replies “Stiff and stiffer” and that seems to sum it up.  Over the last few months he has become increasingly stiff, particularly in the morning. He needs more help dressing because his limbs are no longer flexible. It has become difficult to get in and out of bed and putting on his socks and other garments is sometimes a chore.  He limbers up a bit after taking his morning medication, but stiffness is a big issue.  Reaching down to pick up anything on the floor is a major ordeal and I find myself automatically doing more and more of the tasks that require bending down. He has purchased a couple of “picker upper” aids but I find that I generally am doing more picking up.  I am saddest about the fact that his stiffness has made golfing and bowling both almost impossible for him and despite his sometimes abysmal scores, he has always enjoyed getting out with friends for those activities.  He hasn’t golfed or bowled in the last 3 weeks and I tend to think he may be retiring his bowling ball and clubs…..maybe 9 holes in the afternoon a time or two this summer, but much more than that I don’t foresee.

How do you spell S-L-O-W?   Everything he does these days is marked with an element of slowness.  He walks slower, gets ready to go somewhere slower, thinks slower……Most things are best accomplished after planning ahead and giving him lots of time to both process and complete the task.  I like to walk briskly, decide things quickly, generally do everything at a break-neck speed, so this has been an adjustment for me.  But that being said, it is probably good for me as it gives me more time to “stop and smell the roses” and contemplate life.

Night time choking has become an irritating issues.  Because LBD affects the autonomic nervous system, all the bodies automatic functions don’t work quite as well as they did pre-Lewy.  He often times will wake up choking on saliva that his body has “forgotten” he needs to swallow”.  So far we haven’t been burdened with him having a lot of problems with choking while eating, but we know that is down the road waiting. If you are unfamiliar with the autonomic nervous system, look it up. It controls so many things that you seldom think of. I find hubby’s breathing to be greatly affected. Shallow….rapid….rarely completely ventilating his lungs unless reminded. And his internal temperature control. Oh, my gosh! Hot one minute, cold the next. A constant balance for him not to be drowning in perspiration or shivering.

Balance and gait are ongoing issues.  He tends to shuffle and particularly drag his right foot.  His balance is totally wacky…..good thing he isn’t planning on participating in Olympic gymnastics. I find him often leaning on a piece of furniture or the wall to keep his balance.

Then we have the fatigue factor…..he can do very little without experiences fatigue. Our long hikes have become short walks. Lawn work is out of the question. A long ride in the car or on a plane puts him out of commission physically for a couple of days. Stress exacerbates his fatigue as well, so we try to keep that at a minimum

All in all, the physical changes are manageable in a controlled environment. It is important that we allow for plenty of rest periods during the day, prepare for a good nights sleep through a night-time routine and avoid excessive traveling whenever possible. Our uninvited hitchhiker becomes a more frequent companion. We deal with him as best we can. Finding pleasures in the small things of life helps. Last night he mentioned we hadn’t seen our two year granddaughter in 2 days. “I miss her”, he said. It is clearly the small things (and small people) that help us get through the day. Not obsessing about the things we cannot change also helps. Easier said than done, at times.

So until next time, please enjoy the small pleasures in your life and we will choose to be OK, enjoying the small pleasure and life as we now know it.

Oh, my gosh!

Oh, my gosh! I am blogging today at the request of one of my online support groups.  It has been a bit of a tough week here for many reasons, but mostly family dynamics.  Hubby is doing quite well cognitively at this point, but the physical symptoms have been increasing at break-neck speed.  No tremors, but the stiffness has become so pronounced that he can barely bend to pick something up.  He now needs more help dressing and he has increased thoracic and back pain from the tightening of muscles.  He had attempted to golf and bowl once a week most of the winter, but finds he can barely bend to pick up the golf tee or throw the bowling ball. He has decided he isn’t going to golf or bowl for the next couple weeks that we are in New Mexico.  I wonder if he will ever pick it up again. We still walk about a mile a day but it is slow and arduous.

Oh, my gosh! Night time brings it’s own set of problems with REM sleep disturbances.  I often feel like the mattress is “dancing” as he jerks and twitches in his sleep.  He hasn’t fallen out of bed lately, but he does do a fair amount of thrashing around, kicking, boxer like moves and can carry on a full conversation while sleeping.  And then there are the cramps…..I am awakened a couple days a week with a scream coming from his side of the bed, only to see him sitting up clutching one leg or the other and saying “cramp….cramp!”. 

Now comes my caregiver story.  I am not overburdened with physical care for hubby at this point.  He does many things for himself yet.  I do have the added burdens of doing all the driving, banking, investments, taxes, medications etc, but I have felt I was coping OK.  Yes, I do have high blood pressure that I attribute to stress and some genetics, but I take medication for it and keep it fairly well under control.  Yes, I did have major cancer surgery 2 years ago, but I am doing well and there has been no recurrence.  But this week something new and totally attributable to stress reared it’s ugly head.

On the flight to NM, I noticed one of my left lower molars and my jaw hurt.  As I typically do, I figured it would go away if I ignored it.  It hurt off and on the next few days and then my entire neck on the left side began to ache as did my ear.  Oh, my gosh!  The pain was excruciating and I was sure I needed a root canal….all my teeth on the left side hurt…..Oh, my gosh!  The dentist is going to have to pull all my teeth! Oh, my gosh!  The infection is spreading……I better get in to see the dentist quickly.  I called the dentist who kindly agreed to see me yesterday.  Many x-rays later (each one being painful as my jaw was so sore) the dentist came in and said “I have good news and bad news”. 

Oh, my gosh!  She is going to tell me that she can save one or two teeth and the rest she will have to pull!  In those seconds, I couldn’t even fathom anything other than my teeth had gone to hell in a hand basket! “You have the worse case of TMJ I have ever seen”, she says.  “Your muscles in your jaw, your neck and your head are all one big knot.  You are clenching your jaws so hard that you are putting immense pressure on your teeth and jaw and that is what is causing your pain.  Your teeth actually look great other than a crack in one of your upper molars from all the clenching you have been doing.  Are you under a lot of stress?”

“Am I under a lot of stress?”  I began to sob in the dentists chair.   Through tears and gulping sobs, I tried to tell the dentist what my situation was.  I told her my husband had been diagnosed with Lewy Body Dementia in January and I was facing the progressive, degenerative nature of this disease as his caregiver.  I couldn’t even begin to tell her about the issue with family dynamics.  She patted my back, gave me a Kleenex and told me that my pain and soreness was completely attributable to stress.  She said, “We’ll get this under control this week and you’ll feel better soon”.  She gave me a prescription for a muscle relaxant to take three times a day, told me to take Naprosyn twice a day and instructed me that I should not be chewing for 5 days, but just eat a full liquid diet. She did say that this was going to be a temporary fix….I need to think about ways I handle my stress outside of clenching my teeth.  She will see my again next week and we will talk more. 

Oh, my gosh!  I have to figure this out.  I have long held the mantra that I can handle anything.  I can take care of everything.  I can do whatever I need to.  Well all that may be true, but I am probably ruining my own health by taking that position.  My aching teeth and jaw are evidence.  Although my dentist didn’t say it, I am thinking I need some counseling.  I need someone to help me keep from internalizing all my worry, pain and anxiety.  In the interim, I am going to try and make a conscious decision to stop clenching my jaw, to stop fretting about relationships that will never improve and perhaps most importantly stop thinking I can do everything by myself.  I am going to walk a little more, pray more, try some meditation, massage therapy and possibly go back to the restorative yoga class I took before. 

Oh, my gosh!  Mr. Lewy Body, the dark and nasty hitchhiker who I looked at as a interloper in our lives, has hooked his claws into me too!  I am apparently not coping as well as I believed.  I am going to choose to get this latest issue under control and with my usual zeal, try to figure out what will work for me to relieve my anxiety.  I don’t think I can do it alone, however.  I have been choosing to be OK, but apparently that conscious decision was really more superficial than I thought.  Down deep inside, this caregivers body is calling for help. 

If you are reading this as a caregiver, take this as simple advice.  Take care of yourself.  Try to find outlets for yourself.  Enlist the help of others whenever possible and if your teeth and jaw begin to hurt, go see your dentist!  Don’t let your own health suffer as you care for others.  Oh, my gosh!  I need to follow my own advice. I am closing this and begin my quest for greater relaxation in a bubble bath.

 

Understand, I beg you!

We were home in Wisconsin for 2 weeks, saw doctors, got poked and prodded, arranged for additional work to be done on our house to assure it is handicap friendly and in the brightest moments celebrated 2 grandchildren’s birthdays and saw one do a stunning performance of the Big Bad Wolf in a musical of Little Red Riding Hood.  It was a good 2 weeks despite the abysmal weather.  Hubby did quite well, managed to keep up and seemed to understand most of what was going on and although he dreaded the flights he did his best to keep his anxiety in check.

Today I write about the lack of family understanding of Lewy Body Disease and the ramifications it brings. I think this is a universal problem so I choose to write about it not to vent, but to hopefully change behavior of others not just those we know. While 2 of our daughters and my sister and brother have accepted and understand what our future holds and the limitations it brings and have been most gracious and kind, I am having a very difficult time getting others to understand that many things are no longer within our capabilities.  Perhaps better said, I no longer am willing to commit to things that I know will cause my darling Lewy Body hubby great distress.  No more long car trips, no overnight visits in unfamiliar homes, no more attending events with crowds he is uncomfortable with.  Long car rides cause both anxiety and significant pain and stiffness.  Staying in unfamiliar places increases his level of confusion and makes him anxious, crowds make him want to jump out of his skin.  We manage a plane flight from our home in Wisconsin to our home in New Mexico with the aid of anti-anxiety medications and pain medications.  Once here we are able to simply “veg out” for a day or two as he recovers and then he can slowly begin to get back into a routine of slow walks etc.  Just this morning we sat and had coffee in our screen porch and talked about the fact that we probably need to sell this home within the year as travel is too difficult.  Tears flowed from both of us, knowing that our golden years of retirement are ending way too quickly.

Why is it then, that I can’t seem to make others understand. I send volumes of material on Lewy Body. I assume you read it. I write to you about how the man I love is doing. I am fairly articulate. I am able to express myself with some degree of clarity, I believe. Yes, I know you would like us to drive 8-9 hours round trip to spend a few hours at your house….yes, I know you wish we would visit my husbands Mom more frequently in a nursing home which is 5 hours round trip from our home, yes I know you wish my hubby would attend a huge major sporting event with you.  Yes, Yes, Yes….I understand that you think life is unfair.  I think it is unfair too. I am looking at the man I love as much as life itself and I think….”unfair, unfair, unfair”….I want more time!  So I ask you to understand that there is nothing fair about a progressive neurological disease.   Come visit this man you say care about rather than complain about what he can no longer do….send him a picture of your new home, your new apartment, your new car or your pregnant belly.  Write him a simple e-mail about what you are doing.  Send a newsy “Hello” card in the mail.   Thank him just once for all he has done for you.  Write and tell him how his mom is doing rather than criticize him for not visiting more often. Thank him for remembering to send his Mom flowers (even though I send them).  Tell him you understand his situation….not that you are disappointed in him. 

The ramifications of not understanding Lewy Body and what it does to a LBD patient are far reaching. Those ramifications hurt the LBD patient and they hurt the caregiver. They hurt the person who refuses to accept and to understand what Lewy Body is all about.  We feel guilty for doing what we know is best for us.  Those who choose not to understand feel angry, disappointed and you refuse to reach out to us.  But the bottom line is this.  Some day, the person you love with Lewy Body will be gone….first mentally and then physically.  Death is permanent.  You don’t get a second chance to be kind, to understand and to strengthen a relationship. 

Today, I choose not to play the blame game. I choose to tell you once again, about the physical and cognitive symptoms of Lewy Body Dementia. I choose to tell you that you can please my dear hubby with simple, kind, notes that are not passive aggressive. I choose to welcome anyone who he would like to see for a visit where he is in his own surroundings and can retreat to his room if he needs to. I choose to be OK with my decisions to put his needs before those of others, including myself. I choose to be OK with my role as the caregiver. I choose to love fully and with abandon. I choose to hug more, smooch more and say “I love you” several times each day. I choose to know that traveling this journey with grace, love and faith will help us beat the odds. We will survive this in one way or another. I will likely be left alone to finish my journey, but I know I will have helped him finish his journey with comfort, moments of joy and surrounded by love.

Home…..and full of good intentions!

We got back into Wisconsin on Saturday evening.  The flights were smooth and hubby did well managing to keep his anxiety at bay.  He needed a pain pill for those annoying aches and pains of Lewy Body, but who wouldn’t?  Sitting, sitting, sitting…..it makes all of our muscles stiffen up and get sore from under use!  We try to get him up just to stretch when we can, but the airline staff seem to frown on indiscriminate standing or pacing.  It makes them nervous if we look nervous,  so we try to just do some “chair exercises” and laugh as we see the strange looks we get. 

The weather was 32 and damp when we landed and didn’t improve much for the first couple of days we were here. Still chilly after a couple of days here, but our hearts are warmed by celebrating our 6 year old grandson’s birthday and getting special notes, hugs and kisses from all 3 of the “grands”.  Our granddaughter who is almost 2, marched into the house upon our arrival home and stated “Hewwo, Gamma and Pop!”  And then she promptly climbed onto Pop’s lap and cuddled and petted him.  My goodness….do all little girls have an innate ability to wrap their Grandpa’s around their little fingers?

Looking out at the landscaping, nothing has sprouted yet….and I can’t blame the tender leaves and flowers for staying “undercover”. The river in front of our house still has a sheet of ice covering it which looks like Swiss cheese. Canada geese stand on the edge of the ice like a sentinel waiting for role call.   My hubby proudly made a joke that he thought it was the beginning of a “little ice age”….not really funny to anyone but him, who had read a book about the history of climate changes a year or so.

Much to my surprise, my husband has make an easy adjustment to coming home for a couple of weeks.  He has remembered where most everything is kept and other than walking into the walk-in closet instead of the bathroom the first morning, he has done well.  Speaking of bathrooms, our newly completed “handicap friendly” bathroom is wonderful.  Bright and light….very roomy, enormous roll in shower with room to turn a wheel chair around and glass block walls….new “rough surface” tile floor which should be less slippery when wet, in-floor heat for comfort and to help do away for the need for a bath mat outside the shower….I could go on and on….but what a great change.   We don’t need all these features yet, but I am guessing when the day comes that we need them, we will be glad we did it early! 

I feel more optimistic today.  Maybe we can do this.  Maybe we can travel back and forth between the Midwest and the southwest for a couple more years. And if we find we can’t,  I need to remember to keep my expectations in check. Life is much more important than where we live and if we can travel.  

What is most important to me? My faith, my family, my friends, my health and my marriage.  I need to try to maintain a balance which allows each portion of my life to thrive.  I need to take the time to nurture each part of my life and to continue to be more than a caregiver. I need to begin actively exploring ways to stay healthy, stay connected, deepen my faith, nurture my family and deepen and strengthen my marriage.  I need to continue to consciously choose every day to be OK…..and if I find despite my best intentions that I simply can’t be OK, I will remind myself to seek resources which allow me the break I need to regroup, refresh and restore myself.  A big order, I know.  But I can do this!  Unlike some spouses who face this devastating disease without a support group, I am blessed with family and resources to help me get through it.  I just need to allow myself the freedom of saying yes, when I am asked if I need help.

Today, I end by simply asking you to have the best day you possibly can…..to smile more frequently, walk more often, enjoy the beauty of the earth around you, allow yourself an occasional moment of self indulgence (I will choose chocolate for my self-indulgence) and above all else, love deeply and abundantly.