@nelms My husband and I knew we needed another living arrangement for the future. When care became more 24/7 for me, my energy healer said "What are you going to do if something happens to you?" My two children in town both work full time and I am everything in this relationship. I handle all decision making etc. finances, home management, and because I am a nurse, feel like I am also a care coordinator.
After that we toured two CCRCs in town that also had Memory Care. The idea would be that we would move into independent living together and eventually he would move to Memory Care. Or if I had a stroke ( I have been to ER three times - twice stress related and one emergency appendectomy (the day he and I were leaving for a Viking Cruise) We put a deposit on both because the waiting lists were long. The one we wanted most had a 5-7 year waiting list for the apartment we wanted. But then they introduced us to their newest development which are independent living apartments a half mile away from the main campus, where they have Ind Living apartments, Assisted Living, Memory Care and Skilled Care and Rehab. We were able to choose the decor etc and waited 2 years for these to be complete. I move into Ind Living in August. His Alz/Lewy Body Dementia progressed faster than our timeline so I will be moving in alone. I live alone now for the first time and drive 20 minutes to see him almost daily. My kids visit at least once a week.
This is an expensive option but my husband bought long term care insurance years ago that will cover the Memory Care.
I consider myself a semi widow as my husband lives but he is not the same, although our love story continues. We have been married 52 years. He is 79 innn June and I was 74 in May. This is very sad, but because we are both part of the same community (and I am considered a resident even though I am not there yet) I am able to take him to some of the Independent Living activities and I can take him out to dinner etc. I don't think I will be able to bring him to the apartment. He gets very agitated when we return and I have been advised that it would not be helpful for him or me. Another sadness -to be moving in without him. However I am very active and youthful with lots of friends inside and outside our community. I hope to travel again and I enjoy my grandchildren's activities. I am continuing to live a life even though it is filled with worry, sadness, fear, guilt, and the full time job of being is biggest advocate-much needed.
We have a team care conference this week. This is so important as he has been there two months now and we need to determine who is the quarterback for his medications, how activities can be more enriching, and the best way to handle visits. I am also very disgruntled about finding him unshowered and in his pajamas during the day because he refused to let the aide do his morning care. Many have been untrained for skilled memory care and often are agency he has never seen before so he does get agitated and fights them if they push too hard. He is a huge challenge for the staff. Those who are well trained and experienced in dementia care and redirecting, and descalating, are great with him. I could not handle him any more myself and I wanted us to enjoy a life and have him be in a place where he can have socialization, all the therapies, a fitness center with a trainer and more. He enjoys all the exercise and also loves his speech therapist. All services are offered there.
The other residents are complacent and participate in whatever activity is offered. My husband hates arts and crafts, watching Elvis movies and there is little conversation that makes sense to him. There are 10 women and 2 men and the men do not converse. Meals are quiet.
I got no sleep for three years and as his disease progressed especially in 2025, he began to threaten me and was pretty delusional in the middle of the night.
I took him to day care almost a year before he was admitted. He loved it -three days a week and had his best buddies there. (Now they are all moving in the same direction) . But then as he progressed, he was not enjoying it as much and was disruptive with the group. Bathroom issues became more difficult.
I also had a caregiver once a week during the day. My next step was to find night time caregivers so I could sleep. I interviewed a few and none would work from 9-9 which would allow us to enjoy our evening, could help him shower and then wake up with him in the morning and help with care. They all wanted 7-7 or 6-6.
I also hated the idea of someone in the house all night. I still would not get sleep and would will want to be with him if he got up confused, delusional or even violent.
Then a room opened up in the MC unit. It is a large room with a large private bathroom and shower. I took it and decorated it in a way that is peaceful and a haven for him. He does love his room. They call them apartments but it is really like a large studio without a kitchen.
And I will be close in August.
For his birthday this month I sent out a massive email and asked friends and family to mail him a birthday card with their photo attached.
We will celebrate together. In time, I hope we can come up with a plan that suits him, but the truth is, this is progressing faster than we thought and I take one moment at a time; put one foot in front of the other; and enjoy a hug and a kiss.
It's hard. When I leave I can't even say goodbye. It is a difficult transition.
I am sorry for all of us. I am grateful I was able to make this plan. And my goal is to be a collaborator and not a complainer with the staff so that this will work for all of us, but mostly for him. I know I can't expect happiness but maybe just some peace of mind:)