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Time With My Alzheimer's Husband


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 Time with my Alzheimer’s Husband

As I look back now, I can remember funny and not so funny times.  In the beginning I could not have talked about this, but it has been over eight years and today I can write about my life living with and caring for my husband (after forty years of marriage) for the last five years of his life.

  Way before Jim became ill, we had some serious discussions.  Both of us prepared our papers that spelled out what our wishes would be at the end of our life.  If it were possible, we wanted to die at home.  And we both pledged to see that it would be done. We both wanted to have our bodies used for tissue research, so we took care to finish the paperwork to have our bodies willed to science.  We wanted to have a celebration of our lives but no funeral service. We did not mind talking about this because we both wanted to have our wishes known.  After filling out papers, we went on with our lives and didn’t give that part of our lives much thought.

  We watched our daughter gift us with grandchildren, in 1999 we moved to a place where we expected to enjoy our senior years.  We spent the first seven years enjoying life in our newly built retirement home.  I did go back to work in the fall of 1999 but had to retire in 2007 because Jim needed me at home.  His illness began to manifest itself to the degree that I knew it was time for me to stop teaching and spend the time with him. 

 The first few years were easy. Nothing major occurred.  Doctor visits and diagnoses took up a lot of our free time. When it was time for Jim to give up driving, I was scared to bring the subject up. I talked with my daughter and filled her in on what was going on. When her dad would go out without me, he would get lost and when I was with him, he forgot where he was going even though he had been to all the places so many times. Jim was so cool when we talked with him about his driving. A few weeks after our talk he walked through the house and handed me the keys to our car. That was it. No arguing, no fighting. I knew how hard this was for him, but he did it knowing it was time. His comment to me was I do not want to hurt anyone.

  The last three years of Jim’s life were filled with surprises. He remained his calm, gentle self.  Even in his most difficult time he did not lose his temper. I was the lucky one. 

Laughing occurred at different times. One time we were eating, and he made the comment that the broccoli looked like bushes and asked why we were eating bushes. I told him I would never serve bushes. Another time I was helping him to the bathroom and before we were settled, he peed on my head. I started to laugh, and he asked me why I was laughing so I told him that he missed the toilet. I still laugh today when I think about it. I could have yelled but I didn’t and we both laughed. He said later that he was sorry for baptizing me with his pee. Never did I think that one day my husband would pee on my head.

 When he was no longer able to walk or get around, we spent hours listening to his music. He really liked it when I massaged his feet. I had the den turned into his place during those last months. We needed a hospital bed and other things to make it easier for me and the helpers who came in to assist me in his care. I had a TV mounted on the wall so he could watch a few of his favorite shows. He wanted the golf channel on most of the time. He loved golf and played almost daily during his adult life. Near the end he didn’t talk or watch anything on the TV. Eating and drinking stopped as he slowly began to leave his body. 

 One of the most important things I did was to call for Hospice help. HOV in AZ is the best. I felt supported and had an excellent team. They were wonderful with Jim. They all loved him and loved his gentle nature. I remember that he would smile whenever the nurse came. She would get up close and smile at him and ask him if he was being treated good. I think he loved her. After spending time with Jim and while he was being bathed the nurse would use the time to talk with me and ask how I was doing. She is also the one who suggested that we use the den so Jim could have quiet time but mostly so that I could have some time for myself. During those last months I also hired a nurse to help me when HOV was not here. It helped me a lot so I could spend quality time with Jim as his wife and not just his caregiver. This was very important to me.

 Jim’s death was peaceful. He did not have pain because he did not have underlying conditions that would cause pain. He had Alzheimer’s disease and his body simply shut down. He was not angry, nor did he shout out. He simply became quiet, had not taken in food or water for several weeks, and when it was time, he passed away peacefully. 

 Over those last few years I was so focused on Jim’s comfort that I forgot to care for myself. I took breaks but I did not sleep much during the last months and I was always tired.

 After Jim died and upon the recommendation of our HOV nurse, I chose to see an HOV grief counselor to help me process what I had gone through. She was wonderful. I would tell her that I was doing fine, and she would let me know that it would take time to get my heart and mind on a more even scale. I found out that I had been ignoring a serious health condition during those last years. When I finally went to my doctor, he told me that I needed to see a cardiac doctor. I was experiencing extreme tiredness. I had congestive heart failure and did not even know it.

  My journey began to get myself healthy and deal with the death of Jim. My cardiac doctor took care of my health and my HOV grief counselor helped me with the loss of Jim. I still have heart failure, there is no cure for diastolic heart failure, but it can be managed. I have good and not so good days living my “new” normal, but I think I’m doing as best I can without Jim. Today I still keep in touch with my HOV grief counselor.

 Jim would love playing with our third grandchild. She was born after Jim died. Our three grandchildren are growing up so quickly and I’m so proud of our daughter. She is a wonderful mother.  The downside for me is that we are in different states.  Thank goodness for FaceTime, Skype, and Zoom.  It makes it easy to watch them grow.   

 It is important to know that the ache of losing a loved one will always be with us. The intense pain will not be so debilitating though. Memories will always be with us and I now know that the good memories show up more often now than those last years of Jim’s illness.  

 Grief is hard work.  It needs to be attended to.  If you cry, crying is good. If you are not a crier that is OK too. For me, the important thing is to allow whatever you are feeling.

We are all different and that is what makes us so special.  No two people grieve in the same way.  The “triggers” come and go. Nothing happens without hard work. We are very fortunate to have a safe place like this forum to share our grief. No one judges.

Anne

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Anne. your Jim sounds wonderful, but then so are you!  Thank you for sharing your story with us, it's precious.  I also have memories of my mom's dementia and can relate to finding a bit of humor here and there.  It is a unique journey.  My mom had been mentally ill all her life and was a challenge to deal with but when she had stage 3 & 4 dementia (Lewy Bodies), instead of getting aggressive, as is the case with many, she became softer and more appreciative than she had ever been.  It was a blessing to know her that way, even though her mind was going.  This brings tears to my eyes.  It was a bittersweet journey, but special too.

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Thank you Marty, Dee, and Kay for your support. It has always been there for me.  Kay, I remember our walk through your mom's last days and I was so glad she became softer and more appreciative during her last years.  You are one special person and I have been blessed to have so many people on the forum who have been supportive to me. I am grateful to all those who mention my Jim's name.

 

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