My parents are in their 80s and I recently had to move my father into a skilled nursing facility and my mother into the adjoining assisted living facility. This was difficult for them and for me. They have been married for almost 45 years and have never lived apart and rarely slept apart in those 45 years. They have also come to depend on each other for many things- Mom dials the phone for Dad, Dad reminds Mom of things that she forgets, etc. It breaks my heart that they have to be separated and can't stay in the same room.
Unfortunately, the current state of our senior care system requires my parents to live apart. Because my father is no longer able to walk and requires someone to lift him into and out of his wheelchair, his care needs are too high for assisted living. My mother, on the other hand, only needs assistance with remembering her medication and she likes to have someone stand by when she showers because she fears falling. These minimal care needs do not qualify her to live in skilled nursing care. They have long-term care insurance that covers a large portion of their expenses and it would not pay for mom to live in a level of care higher than what she needs. Even if we were able to pay out of pocket for her to live in skilled care with Dad, she would not be allowed to live in the same room because she would not be Medicare qualified for that room and both residents must qualify! If you're confused by this, you're starting to sense our frustration.
It seems like this system is based on antiquated views of the elderly from a time when most men died before entering nursing homes and most nursing home residents were widows. Now that men are living much longer and many couples are aging together and entering long-term care together, I foresee that this will be a problem for more and more people. One facility even told me they only have two rooms where couples can live together and they have a waiting list for those rooms.
We chose a facility for Mom and Dad where they had both assisted living and skilled nursing in the same building so that my parents could spend most of their days together. Mom and Dad are both blind (This is not new, though. See my
last post for details on that.) so Mom needed someone to take her over to visit Dad. The facility assured us that it would be no problem for them to walk Mom over to visit Dad each day. I assumed they would only have to sleep apart and, while my parents were not happy about even that separation, it was good that they could still be together most of the day. Unfortunately, I didn't realize that yet more regulations would conspire to make this difficult.
Soon after they moved in, we found out that Dad is not allowed to visit Mom or share meals with her on the assisted living side. To be, even as a visitor, on the assisted living side, you must be able to "self-evacuate" from the building. Because Dad is both blind and in a wheelchair, he cannot do that. Because Mom is blind, she can't help him evacuate so she can't be considered his escort when he's on her side.
So, Mom started visiting Dad on his side each day. Usually, the staff from her side would take her over around 10AM and she'd stay until about 8PM when they took her back to her room. It wasn't ideal, but Mom and Dad adjusted and were pretty happy with the arrangement. Of course, it seems things are rarely easy with senior care.
The next issue we faced was the staff's complaint that Mom occasionally asked for help when she was visiting on Dad's side. Even though the skilled care and assisted living are part of the same parent company and even though they are in different halls of the same building, they are still considered to be separate facilities. They each have their own staff and Dad's staff can't/won't do anything for Mom and Mom's staff can't/won't do anything for Dad. Mom is considered a visitor when she's on Dad's side rather than a resident of the same facility. Mom and Dad denied that Mom ever asked for help for herself on Dad's side, but the staff insisted otherwise.
Then one afternoon I got a call saying that Mom had fallen in Dad's bathroom. A nurse had come to give Dad medication and she had left an open glass of water sitting on Dad's nightstand. Mom was concerned that Dad would spill the water, so she took it upon herself to take it to the sink and throw it out. Because she had a glass of water in one hand, she couldn't feel her way to the sink as well as usual and she tripped over the lip of Dad's shower. After that, they started restricting Mom's visits. They told her they needed to observe her for 72 hours, but she said their "observation" consisted of her being stuck alone in her room most of the day. After a few days, they started taking her over to visit for longer periods of time, but they still weren't letting her stay all day as she had been doing. They never called me to discuss this change.
My husband and I then asked for a joint meeting between us and the staff from both the skilled care and the assisted living sides. We had unresolved billing issues and also wanted to discuss a better plan for Mom to visit Dad. In the course of this meeting, the social worker from the skilled side insisted that Mom could no longer visit Dad without a "sitter." She said Mom could not even go to meals with Dad without a "sitter" present in case she had to be taken to the bathroom. This new requirement/restriction was a huge surprise to us and a huge blow to my parents. Caregivers are not inexpensive, so my parents now had to make a financial decision and trade-off. They are hesitant to spend a lot of money because they have a fixed income and don't want to run out of funds. Yet, now they had to determine how much money they could spend to be allowed to spend time together. For a couple who has been married almost 45 years, this was very difficult.
I was, and still am, appalled by the situation in which my parents find themselves. I am working now to find a different facility that will be more accommodating in allowing them to spend time together. I am saddened by the lack of empathy shown by the staff, especially the social worker whose job is to advocate for the well-being of the residents.
I think much of this comes down to larger problems in our long-term care system. There are really no facilities where spouses with differing care needs can continue to share a room. There are very few facilities where they can even be in the same building. There are only a few levels of long term care available:
- Independent living- this is really no care at all but usually involves living in an apartment or patio home that is near a facility where they may go for meals or socializing and activities.
- Assisted living- this involves some assistance such as medication reminders, bathing assistance, or escorts to and from the bathroom. At this level residents usually live in their own rooms or apartments in a larger facility and meals are provided in a communal dining room. The facility also provides activities for the residents.
- Personal Care- this is very similar to assisted living, but there are nurses on staff and on duty at all times. They are licensed to administer medication to residents. At this level of care, they can also handle things such as wound care, diabetic blood testing, and that sort of thing. Residents must be able to self-evacuate from a building in case of emergency at this level. They also must be able to transfer (to and from a wheelchair) with only a one person assist.
- Skilled Nursing Care- this is the highest level of care.
Also, much of the staff at many facilities, even the management-level staff, dehumanizes and infantilizes the elderly. They don't seem to respect them as human beings who have something to offer and who have a lifetime of wisdom. In the conference we had to discuss my parents' care, the social worker talked about "toileting" them on a schedule. It sounded like something you'd do with a dog you were housebreaking, not a human being. My father also recently complained that he'd called a staff member in to take him to the restroom, but he was told that they couldn't take him because it was shift change. Because of their refusal to take him to the restroom, he had an accident. No one should be treated that way.
In case you're wondering. I am in the process of finding a new facility for my parents. I would love to get them out of there immediately, but I need to find another place that has two openings. I also need to make sure that whatever new facility I choose will be better than this one. I'd hate to move them again only to run into problems and have to move them yet again. Each move is difficult and involves many adjustments- getting to know new staff and procedures as well as, for my mom, learning her way around new surroundings. I am just hoping and praying that the next facility will be a pleasant and compassionate place where my parents can enjoy living.