This summer was an emotional one for our entire family. Our aunt was diagnosed with Alzheimer’s disease in 2015 and while we’ve done everything we can to keep her in her own home, she now faced a quality-of-life crisis.
Our aunt never married. Although she didn’t have children of her own, she has always treated my six siblings and me as her own. Since our mom – her sister – died in 1995, she has been the matriarch of our family and a mother figure to all of us. Her social life was very active. She has always been an active and fiercely independent woman. So, as you can imagine, this has been a rocky road for her.
My siblings all expressed a sincere interest in assisting with her care, yet their own family circumstances each presented a number of challenges, mainly to do with scheduling and availability. Since I’m the one with the most flexible schedule, I have, for the past year and a half, been our aunt’s part-time caregiver. This consists of driving from South Jersey to Center City, Philadelphia at least once per week to dispense and organize her medications, attend her doctor appointments, buy food, pay bills, oversee her part-time aide and manage any other needs that cropped up. I’ve spent countless hours on the telephone reassuring her that she hadn’t “completely lost her mind”, as she called it. Her short-term memory loss was frightening her and causing depression and anxiety.
Our family knew her diagnosis of Alzheimer’s meant that eventually she wouldn’t be able to live alone but my aunt, my husband and I had always assumed she would come to live in our home, a request she had made years ago while staying with us for a month as she recovered from heart surgery.
When we realized she needed more than part-time care, I presented this living arrangement to her team of doctors. I was shocked when they all staunchly opposed the idea. Although there were several factors that colored their decision, the biggest one was that she should move to her final home while she is still in the early stages of this horrible disease. The benefit to this is that she will be well acclimated to her residence by the time the disease is in its final phase. They didn’t want her to move in with us while experiencing moderate short-term memory loss and then have to move to a facility later when her memory was all but gone.
Several other problems factored in: I work variable hours so we would still have to hire a part-time aide for her. The doctors felt she needed to have a more regimented lifestyle. In addition, she has been a city girl her whole life. The doctors told us that if she happened to wander alone outside of our home in the suburbs, it could cause great traumatic distress when she not only realized she was lost, but also absorbed that the surroundings looked nothing like the type of neighborhood to which she was accustomed. The last problem was that since she had lost almost forty pounds in the past two years and had great trouble remembering if she took her medications. The doctors felt she would best thrive in a facility where her food intake and medications could be monitored by professionals.
It wasn’t easy for all of us (my siblings and their spouses were all involved in the discussion) to tell her we felt it was best for her to move into an assisted living facility. But, with a great amount of love and respect, we did it. When she got over the initial shock, she told us that she trusted all of us and knew that we always had her best interests at heart. We couldn’t ask for more than that.
Granted, the depression she had already been experiencing did worsen once she realized she was moving, she steadfastly upheld her decision. In her own words: “If I give you a hard time about this, we’re all going to be miserable, and that doesn’t serve any of us.” God bless her!
She’s now been at the Masonic Village Assisted Living Facility in Burlington, New Jersey for a month and she likes it there. The staff is seasoned: most of them have been working there for over ten years, many for almost thirty years. She enjoys the other residents and, even though she’s a fussy eater, she is pleasantly surprised to find that she likes the food. She is happy with the staff members and is making a few new friends.
We love having her nearby and everyone in our family, including our dad and our children, visits her a lot. It’s a win-win situation.
While we were preparing her move, I jotted down a few thoughts. Make sure you go through your loved one’s paperwork before they move. You don’t want to throw away something that could potentially be important in the future. This is especially important if you know you will someday have to apply for Medicaid. What may seem like a pile of useless papers could actually hold the deed to their cemetery plot.
- In our case, we had no idea our aunt had been saving paperwork since she was 13-years-old. I would suggest that you divide paperwork into personal papers and life documents. Do yourself a favor and don’t spend your time reading the personal stuff while you’re onsite. You should bring those files home and go through them there. We made better use of our time going through the official documents with our aunt at her condo. Her short term memory may be impaired but not her long term. She was able to help us quickly sort through everything to find what we needed.
- You’ll need to get new prescriptions from the doctors to bring to the facility. It’s something you wouldn’t think about but it can hold up the process if you don’t have new prescriptions in hand when your loved one moves in. Luckily, our aunt’s doctor was attentive to our requests and we had what we needed in time.
- If your loved one is unable to make decisions about what furniture and decorations they want to bring with them, help them by taking the initiative. We walked through our aunt’s condo with her, pointing out all of the wall decorations and furniture. This helped her to become part of the decision making process and she was much clearer about what she wanted to take to the assisted living facility.
- Start out packing very little. We brought just the essentials and then figured out what else she needed after she moved in.
- Don’t forget to create a change of address online here: https://moversguide.usps.com/icoa/home/icoa-main-flow.do?execution=e1s1&_flowId=icoa-main-flow
- Have a will and living will in place before you move your loved one. Check out this website to explain how to make these decisions https://www.agingwithdignity.org/five-wishes/about-five-wishes . Here’s a sample of a Five Wishes document https://agingwithdignity.org/docs/default-source/default-document-library/product-samples/fwsample.pdf?sfvrsn=2
I hope this helps if you find yourself faced with the decision to move a loved one into a nursing care facility. Enjoy the rest of the summer!