“Honor thy mother and thy father,
(which is the first commandment with a promise),
That it may be well with you and that you may live long on the earth.”
In the Beginning -The First Move Toward Caregiving in Our Home
In 2009, after several years of watching Mom and Dad deteriorate physically (Dad’s weight loss and weakness from heart disease) and mentally (Mom’s bladder cancer and dementia), my siblings and I supported my dad’s idea to move them to the assisted living level of care in their multi-level retirement community.
Assisted living is a great resource for many families; it offers faster access to medical care, quality meals, supervised activities, and socialization. But for my parents, it wasn’t the complete answer. After a year, with their hospitalizations increasing in frequency and each medical visit resulting in a slew of new medications with side effects to manage, my dad was simply worn out. He realized that he could no longer handle all of the responsibilities he had handled up to this point. As a family, we were forced to look at alternatives.
As the only health care professional in the family (BSN), I was consulted for every incident and summoned across the country for most hospitalizations. Exhausting as it was, I was always happy that I could help. But in 2010, when my dad was hospitalized and I went home to advocate for him and manage his medical care, the big decision finally was put on my plate. It was at this visit, when Dad was so weak, that he asked…”Can we just move in with you and John?”
My reply…”Let me just run that by John.”
Caring for Parents in Your Home – The Decision
I would like to say that we sat down together and considered every ramification of having my parents move in with us. We had earlier promised my dad that we would be Mom’s caregivers if he should die first. To be honest, it seemed natural to have them both, and Dad was so feeble, that I really didn’t expect him to live much longer. I agreed with my husband that it was the right thing to do.
A family meeting was scheduled (I am one of eight siblings), and everyone shared their thoughts on the new arrangement. At the end of the meeting, my brother-in-law asked, “Is there anything that needs to be said…anything that we haven’t discussed…anything you are reluctant to talk about?” My husband asked, “What will happen if it comes to the point that we are unable to do it anymore?” It was decided that we would cross that bridge when we got to it… and my husband and I left feeling that we would be totally supported by our family.
John had been planning to renovate our 1950’s bathrooms, so it was expedited and almost finished by the time Mom and Dad arrived. We decided to give them the Master Bedroom since it was the only room with an attached bathroom. Many safety changes were made to accommodate Mom and Dad (a subject for a future blog), and I began the life of a full-time caregiver.
One of the things we did not think to discuss prior to the move was how this life changing event would impact me.
The Symptom: No Rest for the Weary
Having my parents in our home is a 24/7 job. It is entirely different than working outside the home, since there is no time off. The result, for me, was two-fold. I was exhausted, and I didn’t have a life.
The Diagnosis: Caregivers Need Care, Too
At first, I had another caregiver come in so I could go to church on Sunday and also run some errands during the week. We invited friends into our home, but it became increasingly difficult as Mom’s mental status, and then mobility, deteriorated. I became less able to meet the demands of caregiving and I could hardly think about keeping up with relationships outside my home.
The Treatment: Help for the Caregiver
With the go ahead from Dad, I began to increase the hours of the caregivers that we had, and I looked for new caregivers in order to have the flexibility that I needed. Once they were trained to my satisfaction, I was able to get out more or even go to my room and read or take a nap.
For now, we have caregivers from 8:30-4:30 from Monday – Saturday. On Sunday, we have assistance from 8:30 until 2:30. We also have on-call help in the evening if we need/want to go out. I anticipate that at some point we may need more full-time assistance in the evening. But for now, this meets our needs, and I am no longer on the road to burnout.