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I am not the person with Lewy Body Dementia, but I am forgetting my life as I knew it.

April 17, 2014

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. 

 

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12 Comments
  1. I so needed to hear your thoughts today. I am feeling the same way this week. I want the life back that I thought we would have. Our journey has been 2 years since the LBD diagnosis and at least 6 years since our lives started to change. I have been the sole driver for over 3 years now, and I would love to get in the passenger side just once.

  2. Cookie Watson permalink

    So well said and it applies to us as well.I just closed my office so that I could be home 24/7. We too had many friends, an active social life and went out to eat and visit with friends several times a week. Now, because he has trouble swallowing, it has been over a year since we have eaten out. I still continue to have close friends over for meals, but it is not the same. I, too, miss my life, but, I have not felt comfortable leaving him with anyone but our son. We have been married for 52 years and our vows said in sickness and health, for better or worse. The love we have will see us through this final challenge. May God Bless all caregivers and people with this horrible disease. Happy Easter to all.

    • Cookie Watson permalink

      My sentiments exactly. Well said and thank you. May God Bless you and your husband on this journey of LBD. It is not what we were looking forward to in our elder years, however, we will face it with love, courage and dignity. Thank you.

    • We will continue to face the challenges with as much faith and love as we can. Please continue to stay in touch.

  3. Constantia permalink

    Thank you for showing us how to live a life with Lewy Body. We just recently heard that my husband has this form of Dementia. From what I read you’ve delt with it for almost 5 years. Not nice, but good to know what we can expact. Our friends and family are standby for help. They have all offered it. Three times a week my husband goes walking, bicking or gardening with one of our friends or family. I still work and it is nice to know that he is not alone the whole day. Time will tell if the help comes through.
    I am dutch so excuses for mistakes in my english
    Take care
    Constantia

  4. Never worry about any mistakes in your English. We are all in this together regardless of our backgrounds. I am glad you have supportive neighbors. family and friends. Our 2 daughters are our main source of support along with their husbands. I have found that close friends and family seem to understand the best…..or least most of them. We do have both family and friends who avoid contact with us because it is uncomfortable for them, I believe.

  5. Carolyn McDaniel permalink

    I am so thankful I found your blog last night. This is the mirror image of my life. Although my husband it older than yours it all fits. I believe we have been on this journey for about five years but only diagnosed for about three years. I hope you will be able to continue this blog as it is very inspiring and reminds me to quit feeling sorry for myself, many others are going on this same journey. Any online support groups you could recommend would be appreciated.

    • Hi Carolyn; If are on Facebook there are many great FB support groups. Friend me if you are (Mary-Jane Horvat) and I can help steer you to some great resources. My thoughts and prayers are with you. This is not a journey for the faint of heart!

      • Machelle permalink

        I love your blog. The last rang so true for me. Keep writing. I would like some more info on the Facebook support group. I feel I am in so alone most of the time.

      • Machelle: Facebook friend me and I will send you all the links I have. All of them are helpful. Some excellent sources of information. I am actually participating in a study through University of Maryland that I connected with through one of the groups. It’s focus is the caregiver and their journey, Mary-Jane Horvat

      • Carolyn McDaniel permalink

        Thank you Mary-Jane.  I friended you on facebook.  Looking forward to your shaing.  You are right, this journey is not for the faint at heart!

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