Life-Work Balance and a Parent with Dementia

opentohope articles

I reflect at 3am not being able to sleep, remembering it was just over one year ago since my husband Paul and I moved my father and his two cats 700 miles north to live near us.  We were traveling and preparing for his move during the week of our 20th anniversary.  Not what we’d planned in 2015 for such a wonderful occasion but very much needed.  Our anniversary is tomorrow and we have plans to spend the day together and celebrate our love, friendship and growing stronger together through all of the adversity we’ve faced of the past few years.

One year ago today, we moved my father into an independent living (IL) apartment in a retirement community less than 10 minutes from our home.  It seems to have been such a busy year.  We knew that while my father was caregiver for his wife for at least 3-4 years before she passed away, that his mind was not as sharp as it once was.

When we met or talked on the phone we’d discuss the same recent events in the family or news time and time again.  He was so focused on taking care of his wife, that he didn’t recognize what was happening to him.  He was in “emergency mode” taking her to doctor’s appointments, medical procedures, church and beauty appointments that he didn’t realize he needed care himself.  He had gone to the same doctors and locations for years and it was programmed in his mind exactly where he needed to go.  He had a mission and that was caring for his wife of 30 years.  When she passed away in November 2014, my father, a retired Lieutenant Colonel in the United States Army was lost.  My father was eager to start his new life and meet new friends and enjoy his retirement.

Over the past year he began to socially isolate himself, got lost driving more than once on routes we had travelled several times, would forget dates and times of appointments (or arrive when there was not an appointment) with the physician in the retirement community and was sleeping for hours and hours into the midday.  I would check his refrigerator to ensure he had nutritious food or drink available.  Often times, he would have expired milk or lacked items needed to sustain himself throughout the day. We knew cognitively something was going on.  My grandmother (his mom) was diagnosed with dementia when she was in her late 90’s.   My father didn’t believe that he would or could have dementia until a late age, like his mother and probably thought I was more of a nagging daughter at times.

This spring and summer were extremely busy for me, both work wise and personally.  I was my father’s advocate for all of his needs and now scheduled and attended all of his medical appointments.  He was comforted that I attended his appointment and probably frustrated that I would ask questions related to his health and cognitive issues that he would not ask.

Several significant events occurred over a very short time period that got us where we are today, so I’ll list a few but not all below:

  • My father’s physician at the retirement community recommended that he see the cognitive speech therapist within the on-site rehabilitation facility. He didn’t understand why he needed speech therapy and was hesitant to make an appointment.  After explaining what a cognitive speech therapist does, he agreed to go to the appointment.  It was after two appointments with the therapist, that we found out my father was not taking his medical correctly, and in fact overdosing on them in the evenings.
  • Related but unrelated, our vehicle was just subject to a recall where the airbags had to be replaced. Paul and I saw my father’s car make and model listed on the news for a possible airbag recall.  I asked Paul to look up my father’s car on the recall list based on the vehicle’s identification number.  While doing that, he became aware that my father had incurred what appeared to be 2-towing charges the previous day.  We both noticed calls from my father on our phones the night before, but there were no messages and our calls went to his voice mail.  So, that morning while we were both at work and Paul saw the towing charges, I began to call the security office at his retirement community to see if they could go to his apartment since I could not reach him.  The security officer said they were dealing with an emergency and would get over to his apartment shortly and call me back.  In the meantime, I have to say, it’s pretty awful to call the local hospitals to see if anyone by your father’s name was checked in.
  • After finding spoiled food in my father’s apartment, I made him go grocery shopping with me. He kept putting off going to the grocery store, so I took him shopping groceries.  On the way home from the store, I told my father he didn’t have to worry about driving anymore and we would take him to where ever he needed to go.  I asked if he would consider selling his car, and he replied that he was not ready for that.  That same night at 9:00pm, my father called and asked us to sell his car.  After receiving his request, my husband was preparing the car for sale and found a bag of spoiled groceries in my father’s car trunk right.
  • Finally, I’m able to work at home a few days a week, so I frequently stop by to check in and visit with him. One afternoon this past summer at almost 4:00pm, I arrived at his apartment to find his keys in his door and him lying in bed in his pajamas.  After waking him up and the sleep clearing from his mind, he said “I think I’m having some short term memory loss”.  I asked him how he felt about it, and he said “I’m okay with it”.  Well, I replied “I am not”.

I knew there were changes happening sooner than we’d expected, so I asked if I could schedule an appointment with a neurologist.  I felt strongly that we needed a clinical diagnosis and a plan to help slow down whatever was happening to him.   We met with a wonderful neurologist, he began testing my father and recommended a MRI to scan my father’s brain for signs of cognitive impairment.

Also during this time, I had asked my father if he was interested in looking at the assisted living facility adjacent to his IL apartment.  He said he didn’t think he was ready for it and that one of his buddies said he didn’t think my father needed the level of care that the assisted living facility (ALF) provides. but I asked that he have an open mind and just look at the apartment and the facility.

I told him that he didn’t have to decide, just look at it with an open mind.  Our appointment was at 3:00pm.  I liked the facility, the apartment and the services that would be provided.  It was definitely more expensive than where he was living in his IL apartment, but that was due to the increased level of care, including: all of the meals were provided, housekeeping, 24-hour nursing care and a variety of other services to encourage social engagement and life enrichment.

While my father and I were driving to our home to have dinner (less than one-hour after seeing the ALF and one-bedroom apartment), my father said he wanted to move into the apartment and ALF.  That was the end of June, and an apartment was available on August 1st and there were several things that needed to happen to help him move from his IL to ALF apartment.

The month of July was extremely busy and stressful. My work was very accommodating when I had to schedule his appointments on the afternoons when I worked at home.  The retirement community has several requirements when residents move from an IL to ALF apartment, and the movers needed to be confirmed and doctor’s appointments were scheduled.  One of the six appointments were to meet with the neurologist to review the results of his MRI of his brain, where it was confirmed that he does in fact have dementia.

It’s been two months since that diagnosis. Paul and I have read quite a bit on dementia and my father is enjoying his new apartment and the care he’s receiving at the ALF.  He’s in the right place and I’m so happy for him.

My stress level has decreased tremendously, but my heart is sad that I know my father’s condition will only get worse.  I’m scared he won’t remember who I am and how much we love him.  All we can do is be positive and enjoy every day we get with him.

Tomorrow is my 21st anniversary with Paul.  I feel so blessed and can’t help but think about how emotional, stress-filled and busy the past several years have been.  All we can do is focus on the love that brought us together, friendship and support for each other and doing what we can for our family.  Only that will help to carry us forward as we face the challenges together.

 

Carla Vagnini

More Articles Written by Carla

I live outside Washington, DC with my husband Paul and two cats. I have been in public service for almost half of my life. I treasure spending time with my husband, family (both near and far) and two cats. I truly believe that everything happens for a reason and share this belief with my loved ones...that every day is a gift, never go to bed angry with the ones you love and life is just too short. After helping family members through the devastating loss of their loved ones, I took the time write this short book. While dealing with the shock and devastation of death after an unexpected passing or a lingering cruel illness, my husband and I learned valuable information and insights with each experience that I wanted to sharing with others. I found that the help and support provided after the funeral, when all of the family and friends had returned to their homes, was equally as critical as the support provided both during the illnesses and at the funeral. I learned that no matter how much time you might have to “prepare”, there are just too many issues to address and calls to make. All of which are far too many for the grieving loved one to manage on their own. I hopes that when you are faced with providing support to a loved one who has sadly experienced their own devastating loss that the information in my book serves as a guide to help you weather the storm with a little more ease and comfort.

Leave a Reply

Your email address will not be published. Required fields are marked *