It seems like you are always waiting for the next shoe to drop when dealing with Alzheimer’s. There are lots of plateaus where you struggle to provide the care required and things seem to work okay for a while. But as the disease continues to progress there are ever increasing needs and concerns, which can come slowly or all at once.
My wife Kristie began showing signs of Alzheimer’s in her early 50’s. We were fortunate because Kristie’s mother was living with us and able to help monitor and look after Kristie while I was at work. This allowed me to work for 3 more years following Kristie’s diagnosis, but required that I direct all my attention to caring for her when I wasn’t at work. I then retired early and started working half-time, but soon had to hire someone to be with Kristie when she started wandering out of the house in winter weather without a coat. I refer to this period as “Good Time” because we were still able to enjoy our home, family, and friends; though Kristie’s abilities were quickly waning.
In an effort to better care for Kristie’s with her ongoing decline, we sold our historic home in Oregon and jointly purchased a home to live with our daughter and her family in Michigan. By this time Kristie was incontinent, and it is questionable if she would have been able to make the flight across the country even a few months later.
It was a radical change with me as a full-time caregiver in a completely new environment. Within a month or two of our move, Kristie became very anxious and start to pace almost constantly, and had to be watched constantly that she didn’t just wander off. I am not certain whether it was the move, the progression of the disease, or a combination of the two which caused Kristie’s almost constant need to be in motion. While I feel in our situation it was the right decision, moving someone with dementia can be very confusing, disorienting, and difficult in the middle stages of Alzheimer’s and may result in them pacing or wandering.
Fortunately, my daughter encouraged and made it possible for me to attend an early-onset Alzheimer’s support group where they advised me to install child locks on our door handles to prevent Kristie from escaping without notice – which was a godsend! They also encouraged me to take advantage of daycare options and were able to make recommendations about what was available. Another suggestion from my support group was getting in touch with the local Area Agency of Aging which provided numerous senior citizen resources like caregiver training and in-home medical care.
I cannot imagine how I would have coped or survived the radical changes which were happening as Kristie declined without the support of my daughter and son-in-law, the advice and recommendations of my support group, and the added services from the Area Agency on Aging. Their combined encouragement, help, and support were empowering, and made me feel like I was not alone and without needed resources. I do not consider myself unresourceful, but I cannot imagine trying to deal with all the issues that can confront a caregiver for someone in the active, middle stages of dementia without the backing and help of family, support groups, and local agencies.
One of the best things during this period was watching my wife laugh with our 3-year-old grandson as they would watch cartoons together. We were on one of those plateaus where we were coping quite well, and wondering when the next shoe would drop. It happened suddenly and without warning, 8 months after our move to Michigan.
It was a Sunday morning and I realized Kristie could not remain seated during church so we returned home. As soon as we got home, and while walking through the kitchen, Kristie made a shriek, tried reaching out to me, and then fell over backwards as she quivered violently in the throes of a grand mal seizure. It was horrible to witness and I felt totally helpless as I watched her eyes roll in their sockets while she shook violently, struggling to breathe.
An ambulance took Kristie to the hospital, where she had another seizure, developed pneumonia from ingesting liquid into her lungs, and was unconscious for 24 hours. They released her to a rehabilitation facility a week later after treating her pneumonia. She was immobile and lost the ability to speak. She remained in the full-time care facility for 3-weeks while they tried physical therapy and we prepared to bring Kristie back home.
We needed the 3-weeks to prepare things at home, including purchasing a handicap bed, getting a wheel chair, making our house more handicap accessible, and coordinating with the Area Agency on Aging for medical and other services in our home. I really appreciate the training the Alzheimer’s Association and the Area Agency on Aging provided on how to move and care for an immobile patient, and the in-home services they were willing to provide. I feel fortunate that we were able to contract with a couple of caregivers who relieved me for 3 or 4 hours most days so I could get away to exercise, shop, and relax. We had reached another plateau which became our new manageable, regular routine.
After providing 6-months of intensive in-home care, my daughter suggested I consider 2-weeks of respite care for Kristie to allow me to visit family, take care of other business, and get away. What I thought would be temporary time-out, would change everything as I describe in Long-term Care Placement & Facilities.
*Note - As far as I am aware, grand mal seizures are only common with the Presenilin 1, Dominantly Inherited Alzheimers, that affects less than 1% of those with Alzheimer's - therefore the vast majority of caregivers do not need to be concerned or worried possible seizures. My wife, her father, grandmother, great grandmother, etc., all inherited the Presenilin 1 gene mutation and were afflicted with seizures.
As always, readers are encouraged to share their stories, advice, and links regarding In-home Care & Support in the comments box below.
Resource Links
- Alzheimer’s Association – discussion and resources for in-home care.
- Alzheimers.net – Caring for someone with dementia: 5 fundamentals.
- Alzheimers.net – Six Alzheimer’s care option for senior loved ones.
- WebMD.com – Making your home safe for someone with Alzheimer’s.
- NHS.UK – Suggestions for staying independent and living at home with dementia.
- Home Care Assistance – 10 strategies for caring for a parent with dementia.
- Agingcare.com – Caring for a senior with Alzheimer’s at home: tips and strategies.
- Caringbridge.org – 7 dementia care tips from a caregiver who understands.
- A Place for Mom - What services do in-home caregiver's provide.
- Seniorlink.com - Dealing with stubborn aging parents with dementia: 50 expert tips for communicating, gaining cooperation, understanding behavior, and more.
- At Home HealthCare – How to care for parents with dementia at home.
- Family Caregiver Alliance – Ten real-life strategies for dementia caregiving.
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