My friend and her four siblings have been taking turns sitting with their 88-year-old mother, who recently returned home following rehab for a mild stroke. Dementia began to set in several years ago, but things were not so bad that the siblings didn't feel they could leave their mother unattended while the baby sister - who has lived with her mother for nearly 20 years - worked at a "day job" in this community. All bets were off when Sue* suffered the stroke. Now she has to be reminded - and often prodded - to dress, brush her teeth, and eat. Other times, she will do these things repeatedly. My friend told me one day recently, "Mom brushed her teeth three times this morning."
At her wits' end, my friend came to me recently and asked for help... what did she need to do to get the ball rolling for her mom to enter an assisted living facility. I told her I would be happy to help her "navigate the waters." I inquired a couple of days later at the Assisted Living Facility where my grandmother resides and discovered there was a room vacant right across the hall from Mam-ma. "But she better hurry," the administrator advised. I relayed this information to my friend that evening, and she sheepishly looked at me and said, "We're not ready." I nodded and told her I understood... I've been there... but she needed to be aware that the clock is ticking.
Two days later, my phone rang. My friend asked if I could meet her at the ALF and show her around... let her see Mam-ma's room and answer a few questions. I told her I would be glad to do that. We agreed on a time to meet, and I thought she said her sisters were coming with her. When she arrived, her husband and one sister were with her... along with her mother. She said, "I told Mom we were going on a little outing."
We toured the facility, I answered questions, and we visited with Mam-ma, who gladly showed them her apartment. I had visited with the administrator before the entourage arrived, and she told me to visit the vacant apartment across the hall. We did that, as well. I showed them menus for the week and the monthly calendar. We opened closets and drawers and everyone commented on how spacious the apartment seemed... perfect for their mom. Several people poked heads out of doorways and realized that they knew Sue and her family... and many came to greet us. Sue hugged my grandmother as she left and said, "I may be back real soon, and we can visit."
The next morning, my friend called and dejectedly told me that her mother had thrown a fit in the car. She was NOT moving in with a bunch of people. I reminded my friend that we had toured that very same apartment one October, and the next day Mam-ma declared, "That's not for me. I'm not moving down there." Less than a month later, she was ready... and the apartment was gone. It would be several more LONG months before we were able to secure an apartment and officially make the move.
Meanwhile, I see the toll this is taking on my friend and her siblings. Three of them are trading off days... sitting with their mother while the youngest sibling works. This woman is responsible for her mother each evening. I can only imagine how tired she must be after working all day... and how confined she must feel. Even if her mother eats dinner and goes to bed, this woman can't go out or do anything socially. She probably doesn't feel comfortable to do much entertaining in the home, either.
I told my friend that I fully understand her dilemma, but I suggested she continue with paper work and basic preparations, in case things change suddenly. AND... I reminded her that she is dealing with a problem we did not have... dementia. At some point, it may be necessary for the siblings to force this issue - for the sake of all concerned.
Later in the day, while shopping, I ran into the other sibling who had come to the ALF with my friend. I told her that I had heard that her mother was not pleased. She said, "Oh, mother was SO upset. She is not used to being alone like that." I know I looked perplexed, and I said, "Your mother would NOT be alone at the ALF... there are people everywhere." She replied, "Well... yes... but she wouldn't participate in any activities. She would just sit in her room all day." I agreed that some residents do this... but she would always be given an opportunity to socialize and participate in activities.
Then I told her that she and her siblings are going to wear out if they continue to provide all of the necessary care. She said, "We may have to get someone to help us a little, but if so, that's what we will do." I mentioned the sister who works and lives with her mom. "Oh, she's used to that," she replied. I suggested it was terribly confining, and she said, "That's all she knows... she's lived there almost 20 years!"
I realized in that instance where the real difficulties lie. The siblings are not all on the same page. Their mother may not be ready to agree to move to an Assisted Living Facility... but some of these children are most definitely not ready. And as long as there is dissension among the siblings, nothing will change. Their mother may have already surpassed her mental capability to make this decision... but these siblings are not emotionally ready to say, "This is best for Mom - and for us." Until this happens, they will continue spinning their wheels and making themselves crazy on a daily basis as they attempt to meet their mother's needs - and demands - in her own home.
I fully understand that this is a difficult decision. And thankfully, my grandmother was mentally capable of deciding on her own to make the move. But we don't all have that luxury. My maternal grandparents were somewhat "manipulated" into moving into a nursing home by convincing each one that they were going because the other one needed to be there. So my grandfather would say, "I'm only here because Mother needs to be here." My grandmother would tell others, "I'm just here until Daddy gets well and we can go home." My grandfather was virtually blind and deaf... my grandmother had Parkinson's disease. Neither one could care for themselves - much less each other - in their their own home.
I strongly suspect that this family will be like countless others ... they will rock along in their current situation until something else happens. Their mother will suffer another stroke and either lose her life or be so incapacitated that she has to go to a nursing home... or she will fall with the same results. Hopefully the outcome will not be such a toll on the caregivers that their own health suffers. And I am not saying that the ALF would be better. Sue might love it... or she might be perfectly miserable there and make everyone else miserable in the bargain.
All I can do is be encouraging and supportive... and share my own experiences in hopes they will help someone else. For the moment, my grandmother is doing amazingly well. She even managed TWO "I tell you whats" for me yesterday... more than she has spoken in months. However, she totally ignored me as she tried to wheel herself to the bathroom... so I know that another fall is always just one mis-step away. And I have accepted this.
I had to laugh as I checked out at Wal-Mart yesterday - I had diapers for Zola, our great-niece... and diapers for Mam-ma. We've been at this a while now. Timothy is three and has been out of diapers for about a year. Hopefully Zola will follow suit soon... but Nathan is only six months old, so we will have baby diapers in the mix for a while yet. And one of Mam-ma's friends is 103 and a half... and another is 106... so who can say how much longer we will be buying the bigger variety, as well!
Part of my consolation is that I am amassing a wealth of knowledge that just might help the next person... like my friend and her siblings. There has to be some redeeming purpose in all of this... and maybe that's it! If/when my friend and her siblings ARE indeed ready... I'll be here to help them.