Dear @katrina123

I understand well the fears that you are facing. My husband and I have been together for 48 years. You have us beat by 10 years, years that I, sadly, will not have with my Gary. You have many decisions to make.

First let me share a quote that I turn to again and again:
“Anxiety does not empty tomorrow of its sorrows, but only empties today of its strength.” — Charles Spurgeon

Now I will share my story, not to suggest that you think or do what I did, but simply so that you get the benefit of what I experienced.

Last year I almost died. One night I found that suddenly I could neither type nor write. Other symptoms started to appear. By the time I realized that I needed serious neurological help, AND made arrangements for my husband to enter memory care if the ER determined that I had a serious issue, things were dire. It turns out I had a massive bleed in my head. Thank goodness they were able to operate immediately and, amazingly, I recovered fully.

In the meantime, my husband was in a medium-sized facility with a good reputation, 5 minutes from our home. He was still going to a day-program from 10 – 2pm and, first, in the week after the surgery, my brother would visit him daily. Then I visited him daily. He was chipper, was happy to see me, did not complain when I left. Friends, family and our neurologist told me that that was the living arrangement that made sense for his stage and for my health and life. I knew I needed the time to fully recover. I also had the opportunity to realize that the care solution that I had been trying to make work was unsustainable: Caregiver for the morning routine, day-program mid-day during the week, trying to get a caregiver for the evening and weekends. It left me with a huge management job and no time blocks that suited what I needed to get done. So, I viewed the medical crisis as a well-hidden blessing and I committed to the new arrangement.

But about a month and a half to two months later, things started to sour.
 He started resisting me leaving. I hired a companion to be with him between dinner time and bed time, so he had dedicated engagement and conversation. The other residents generally could not talk and the staff was generally people with limited English language capability
 More worrying, he started to get anxious and fearful. I think it was partly the noises in the facility: The other residents sometimes cry out, etc. He talked about “mean boys” who hurt you. He started getting resistant to toileting help, probably because of the many different people involved, with different levels of care and patience.

As much as many of the staff members were sweet and liked Gary, and the managers were understanding and collaborative, I could not bear having him feeling that way and did not see a way to make it work there. I considered another facility that had more activities and an event stronger reputation. But, on the home front, I also was unsettled. Despite the company of our two dogs, the house felt very empty. Also, I was having a hard time fitting our relationship into the hours spent visiting him daily.

Mindful of what I had learned about the level of help I really needed. I decided to investigate live in care. I learned that the large agencies can cost twice as much as a facility, and you can end up getting dozens of different people sent over time. Instead, I found a small agency that represents independent care providers, but also offers the comfort of having someone who will make sure that I have coverage if my regular caregivers cannot come or cover for each other. I was able to interview several people. Since last fall I have had two wonderful young women, one 5 days per week and the other 2 days per week. They focus exclusively on Gary, his emotional needs as well as his physical care. I have the flexibility to go anywhere at any time. I am able to focus on being his wife, social secretary, cheerleader and pal. I have time DURING THE DAY to attend to administrative tasks, home maintenance, etc.

I had worried about having “strangers” in the house, in terms of privacy and security. They stay in their room when not with Gary. I worried about having to cook for everyone. They take care of their own food. I worried about insurance. I was able to add riders to my homeowner’s policy. Yes, there are things you need to work out about daily routines, etc. It is also important to invest in the relationship of respect and appreciation with the caregivers.

Things have changed a lot since last fall. Gary was fully ambulatory and talking and physically healthy then. He is now in hospice care at home. We (the caregivers and I) have worked through the adjustments together. It is wonderful to have knowledgeable, caring partners regarding all the tactical elements. It frees me to work actively with the doctors and do the research needed on the medical elements.

Your situation. What I wrote above is what I experienced and what I found that worked for us. Your own health condition may require much attention. Your husband’s symptoms and needs may be very different. Your own comfort with overseeing his care may be different, etc., etc.

There are good facilities. If you are not part of a local support group, you may consider joining. They are great sources of insight into local care facilities. You just have to be clear about the limits to what they can do for each resident, given their business and staffing models.

Just know that there are options. Take your time and pick based on a real assessment of your priorities. We are all wishing you the best as you navigate this difficult transition!