This blog is about the journey my Mom and I are going through, specifically moving her from her home in New York to assisted living here in Cary.
I hope this blog can be a good source of information in helping the sons, daughters, and friends of loved ones who are unable to continue living safely alone. Specifically, loved ones who need some form of assistance 24/7. That’s the current situation with my Mom.
So, the question many face in this situation is “If not home, where then?” Good question. The answer? There’s no absolute “right” answer, but there is a "best" answer.
Prior to the Journey
Mom graduated high school and went to Wooster University in Ohio. Some years after college graduation, she answered an ad in the NY Times about teaching opportunities in Long Island. She got a teaching job at West Babylon elementary school and for the next 35 years of her life she taught Kindergarten and 6th grade.
Accelerating forward, my Dad passed away entirely too young in 1992 from a heart attack. In 1993, Mom married a longtime friend of the family John “Jack” Doyle who was an administrator in the Babylon School district. Jack served our country in the US Navy in WW2 and was such a kind and fun person. Mom retired from teaching in 1993 to travel with Jack and purchased a home in Florida to become “snow birds”. Jack became our second Dad (Grandpa Jack to our kids) and we loved him very much. Jack passed away in 2012 and really it was at this point the journey with Emily started. I didn’t really comprehend it at that point, but you could say that the metaphorical boat pushed away from the dock, I didn’t have my pre-underways done, nor did I know where the heck we were going. It was though Sulu in Star Trek turned to me and said “Where to?” and I said “Somewhere out there."
The Journey Begins
After asking questions and making observations, I found that Mom knew how to write checks, how to record them in her checkbook, and knew how to use credit cards, but she never actually learned how to balance the check book, nor did she have any idea what Jack did in terms of retirement and checking accounts. What I discovered is that over the years of being married to my Dad, Robert, and then later Jack, she never took care of the bills, checking, credit cards and investments in any significant capacity other than spending. Mom had a faint idea of what Jack was doing financially, but he took care of all the details. She mainly spent and Dad/Jack managed her spending best they could.
This was a revelation for me. As I looked further into this, specifically the past three years, I discovered that she hadn’t filed taxes in those three years and Jack, who had mild dementia prior to his death, started creating and closing accounts that didn’t make sense. The deeper I dug, the more issues I found. It took me a good six months to get a clear picture and reorganize accounts so I could manage. I decided at that point to take over managing Mom’s finances.
*Note: I’m going to use the letter ‘R’ followed by a number for the rest of this post to designate my recommendations to you the reader.
R1) Get together with your parents early on to get a picture on how they are managing finances. Is one solely responsible for managing them or do they share responsibility? Can either parent step in if the other is unable to? Take time to understand how they have organized their estate.
R2) Recommend to your parents (and yourself) to create some type of estate plan. Whether there is a lot of money involved or not, having an estate plan is essential. It helps the Trustees to organize and create a plan that is tailored to the wishes of Mom and Dad and gives the sons and the daughters a plan that can be communicated between family members and can be executed more easily.
*Note: A year after Jack’s death, Mom and I created an estate plan according to Mom’s wishes tailored to the immediate family. It was an extremely helpful process that allowed me, as the primary trustee, to communicate with my brothers.
R3) Powers of attorney. This typically is also part of the estate planning process. It’s very wise to have powers of attorney in place that covers both financial and health situations
I’ll fast forward a bit from January 2012 to early 2015. During this time frame Mom’s physical health began to decline as well as her cognitive capabilities. Mom had Diabetes. At first she managed her medications well. But going into late 2014, she began forgetting to give herself shots.
The Tough Decisions
Emily and Tim at a veterans event in Raleigh, 2015.
In May of 2015, Mom expressed she wanted to return home. This was really the first of many key decisions for Mom and the family. From Mom’s perspective, there was nothing wrong with her. Yes, she would forget things time to time and yes, she was increasingly having difficulty walking, which impacted her ability to drive, but in her mind it didn’t matter. She’s going home. Our concern was Mom was showing definite signs of dementia which impacted her ability to take her medications when she was supposed to.
With her foot problems, she sometimes would develop wounds because of her shoes. Left unattended, it could lead to infection. It was at this point we started thinking about home care for Mom in New York, but she felt it was not necessary since my two brothers lived close by; they could check on her and help when necessary. I’m sure many families reading this have heard scenarios like this before and eventually learned that family members struggle in a dual role of son/daughter and caregiver. I struggled in this capacity and I strongly believe that in most cases a family member, unless they have specifically made the commitment, can’t be counted on as a primary caregiver. In May of 2015, Mom returned to her home in Warrensburg, NY.
The Going Gets Tougher
When Mom returned home, things were okay at first. But, after a few months, my brothers became increasingly concerned about her memory and her ability to remain independent in the home. Mom was forgetting to take her insulin, which resulted in frequent high sugar levels. She was not going to the doctor regularly because of difficulty driving. In August, I received a call from my brother in Glens Falls hospital that Mom had a very bad infection in her left foot. The doctors said gangrene had set in and they need to amputate the left foot above the ankle and below the knee. They were looking for my approval. Mom successfully had the operation and I flew up to New York immediately to be with her.
When I first got to the hospital less than 24 hours after the operation, Mom was very lucid and in relatively good spirits. The surgery went well. I met with the doctor and the case worker assigned to Mom. They said with her current progress she would be discharged to rehab in a day or so. The rehab facility was in the same building, so it made it easier for the transfer. However, once Mom got to rehab she got very confused on how she was there and what happened to her. She became very defiant and child-like. I was shocked and terrified of the change. What I learned, both since that experience with my mother and later on with some of our clients, is how traumatic it can be when the confusion of the dementia is in full-effect. The forgetfulness can make a person become rude and/or cruel. For me, it’s not that I became comfortable with this. I simply came to understand it more and that improved my interactions with Mom substantially.
In other words, "Snap out of it, Mom" wasn't going to change her condition. As my wife frequently says and I’ve grown to embrace it, Mom is doing the best she can under the circumstances.
After 3 days in the hospital Mom didn’t really sway from her demeanor despite my best efforts to encourage her to work with the professional OT/PT people that were the key to her release to home. I encouraged Mom to work with them because their purpose of working with her was to get her to the point she could go home. However, she kept to the position that these people didn’t know what they were doing and she just wanted to go home.
I was really struggling in terms of what to do. I needed to get back home soon to help Gina run our home care agency, but I couldn’t go home with Mom’s situation in flux. So what to do? What I’ve learned in the home care industry is there are great people who can help. In this case, besides the great doctor, she also had a great case worker. Case workers are one of the many angels that are out there in what Gina and I call the “circle of support”. I talked with the case worker and asked to attend the weekly case review for my mother. For those that don’t know, hospitals have a case worker assigned to a client while in the hospital. This case worker is at the point of a team that includes physical and occupational therapists, the attending nurse and the doctor.
The doctor is responsible overall for the care of the patient, but the case worker is the key person that is at the helm of setting the discharge. I got to sit and listen to everyone’s report and then the doctor gave me my chance to speak. My first comment was more of an observation. Mom was being defiant and not doing a very good job following therapy. I was concerned she never would complete therapy and as time progressed, this could be counterproductive. I then posed a “what if?” What if we arranged for 24/7 home care and bought in home health? Home Health could take over the physical and occupational therapy. Mom would be more cooperative in her home setting. I would talk to Mom and let her know she is being discharged with the commitment form for her to continue with therapy so she could get to the point to live independently at home (note: we were not sure this could come to fruition, but at this point we felt it was the right approach to talk about goals and give her hope and a mission).
To the Glens Falls Hospital's credit, the entire team felt this was best for Mom given the situation. This is where I embraced one of my "live my life" rules that in difficult and muddy situations, there may be no right or wrong answer, but there is a best answer. In Mom’s case, the best answer was to get her home with good professional home health and home care.
Trouble at Home
Less than a week after the operation, we had Mom back in the home with both home care and home health. This was a great feat and there’s a long list of people to thank at Glens Falls hospital, as well as all the home health professionals that provided assistance. Right off the bat, I realized just how inadequate Mom’s house was in terms of supporting her. The house was a ranch style home, which was great. But, we still had a number of problems:
2. The bathrooms were totally inadequate to support a person in a wheel chair or walker. The bathroom doors were small, so we needed to get a smaller wheelchair. The showers were small and hard to access. No grab bars were in the shower and the shower had the standard shower head. We subsequently installed shower bars, a shower wand and got a shower bench.
3. The primary problem was no ramp access to the house. We eventually built a ramp in the garage to allow wheelchair access.
What did I learn? It's best to anticipate potential issues with the place (home, facility etc.) you will live out your life and the ability of the house to support you if you have mobility issues. My Mom bought the home in 2008 thinking the aforementioned modifications were "for old people" and did not consider the thought of purchasing a house that could be easily modified to accommodate a wheelchair, for example..
I returned to North Carolina and quickly put a plan in place with the help of Whitaker Glen, a continuing care retirement community in Raleigh, to temporarily move Mom back into their facilities with which she was already familiar and comfortable. Another benefit was being able to have her under the care of her previous geriatrician and also get the help of one of the top Physical Therapists in Raleigh, Frank Hielema of SureSteps.
Mom was making great progress. However, in early December, Mom had a series of TIAs (transient ischemic attack or often labeled a “mini-stroke”). She went for a short stay at Rex, but we got her back. We increased the level of home care at Whitaker because we became increasingly concerned about her being by herself. In early February, Mom had another series of TIAs, which we believe was bought on by a UTI. She went to Rex Hospital and quickly was discharged to rehab at Oaks of Mayview. While there it was very clear Mm’s ability to live by herself was no longer viable. Between her disability and cognitive decline it was too risky and not feasible to return to independent living at Whitaker Glen.
A Trial at Assisted Living
We are very grateful to the staff at Sunrise Cary, which includes both Legacy Healthcare Services and Gentiva Home Health. We assessed Mom’s current situation and resumed OT/PT. All this time, though, Mom looked at Sunrise as a temporary stop and remained steadfast she wanted to return home to New York.
At the present time, Mom’s dementia continues to steadily decline. At times, she thinks she’s in New York. At times, she speaks of New York as if it’s the 1990s. This is the world of a person suffering from dementia and/or Alzheimer’s. It’s a terrible thing for a person to have, but many people are inflicted with this condition. As a son, I’ve learned to understand it better and interact with Mom in the moment. My goal as her son, as with many of you out there (sons, daughters, relative etc. of loved ones that are unable to live alone), is to find the best place for Mom to live out her life with purpose. I believe that Mom’s heart is in New York. It’s important for her to be close to my brothers. She wants to see the children of my brothers Rob and Peter, most importantly.
Use your support system!
So after many years of accumulating stuff in her house, I’ll be looking to sell Mom’s house, which includes an estate sale. Again, we’ve turned to the circle of support to seek our professionally credentialed senior move managers that can do anything from selling the house,to selling possessions in an estate sale, to moving the client into a facility.
Currently, I have a Geriatric care Manager helping me build and execute the plan. I also will contract with an experienced move manager to help me with the sale of the house and the permanent move.
Where to for my Mom Emily? I’m not sure. It could be here in North Carolina in a smaller residential assisted living facility or assisted living in New York. Over the next 60-90 days, Mom’s journey will move along to a new place and I pray it’s a wonderful place Mom appreciates. In a few weeks, I’ll be making a trip to New York to meet a Geriatric Care Manager and survey the house.