W’s Year in Review
Mid-way through the year, W had to be relocated to a memory-care only facility. In the place where we had lived for 8 months, the memory care unit there proved too small (in square footage) for him. He got very aggressive and had to be sent to a psych hospital for 1.5 weeks. While there, the doctors were able to adjust some of his meds so that he was less aggressive and/or frightened. I truly believe that the combination of the lack of appropriate meds and the tight confines made him feel trapped and frightened. So, after the psych hospital, he relocated to Peregrine’s Landing at Peachtree Creek in Smyrna, GA. He has settled in very well. The facility is pretty large, with lots of safe outdoor space, activities designed for dementia patients, several community pets (dog, pig, chickens, fish, etc.), and so on. W seems to have developed his own routines, has a playful relationship with the staff and is generally doing pretty well.
That said, his dementia continues to progress. His world seems to have shrunk considerably. For instance, at one of the facility holiday events, there was a young child present. W didn’t even notice her, while in years past, he would have gravitated to her and wanted to interact and engage her in conversation. He often seems to be looking off into the distance or living behind closed eyes (see photo below). When I ask him what he’s seeing, he can tell me about cats, dogs and other things he sees. Previously, he’s had a lot of visual mis-perceptions… hallucinations, etc. One of our doctors said that his eyes are functioning correctly, but that his mind does not translate the data correctly. So, I have chosen to believe that he is living in a world that his eyes/mind can see because the world in front of him doesn’t make any sense to him. His visual field for the “real” world seems to be about 4′ though his hearing radius is much greater.
He seems to know me, or at least he knows that I’m someone familiar. I’ve been able to have several “sleep overs” with him, and he seems to enjoy the opportunity to cuddle and be together. He also enjoys it when I rub his feet, put moisturizer on his arms and trim his finger and toe nails. He often says he misses waking up with me, but he doesn’t seem sad or distressed. He is happy to see me, but not anxious or agitated when I leave.
My Year in Review
This has been a balancing act. It is very difficult to feel that I am giving the appropriate amount of attention to W, our dogs, my work and myself. I battle a persistent sense of guilt. I’ve moved into my own apartment with the two dogs. The dogs miss the constant attention they got from W and the residents in the Assisted Living facility that was our home for 8 months. They don’t get nearly enough exercise and play in our current situation, but it’s the best I can do. I’ve considered surrendering the dogs to a rescue organization, but am torn because the one thing W would want me to do is to take care of the dogs. And I don’t want to give them anymore stress than they’ve had. So, we’re finding our way into a new way of being family.
Because it appears that I will need to work until I’m age 100, I determined that I needed to get more fit. So I joined a gym and work out about three times a week. I also work with a trainer who pushes me to try new and more difficult things. I am feeling much better, stronger, and have a lower (I think) stress level.
I am slowly learning to live with a bi-county marriage (and a bi-reality marriage). I miss W a lot and look forward to seeing him, but at the same time, I find myself anxious and dreading visits, because I never know what frame of mind he’ll be in. Often I traveled the 30 minutes it takes to visit him, only to have him tell me “thanks for coming, bye” after 20 minutes. This is a bit frustrating. I also notice that when I’m there in the evening and he begins to do his sun-downers thing (often Alzheimer’s patients get agitated and restless as the sun sets, possibly from fatigue and possibly from the diminishing light), I want to flee because I don’t like to see him that way and I don’t know what to do. I hope to grow in my ability to stick with him during these moments.
On the upside, I’ve been able to have a few “sleepovers” with W and those are wonderful. I don’t get a really good night’s sleep, but am so grateful for the chance to hold and be held with the man I love.
I also find that I must be attentive to the slippery slope of medical protocols. W had indicated that he didn’t want extraordinary measures and that he wanted me to let him age the way he was going to age. So, I am constantly debating with myself about what medications and procedures are appropriate. I am working on a palliative care model which means that I want to keep him comfortable (pain free), safe and manageable. It seems to me that the “industry” of senior living and dementia care is seen as an opportunity for fee generation by many of the providers. Often a visiting nurse or physician will say, “we can get this for W… medicare pays for it.” Most recently, someone wanted to order diabetic supplies including insulin. W is not a diabetic – never has been. When I asked if the staff had reported any behavior that might indicate an imbalance in blood sugar, I was told ‘no.’ So, I had to explain to the person that I saw no reason to have my husband have to prick his finger every day just because medicare would pay for it. Likewise, I decided not to make him have his colonoscopy this year… that would just be cruel.
Financially, the year has been an adventure. I continue to nibble away at my retirement savings, but so far, it seems to be working. During the year, I was able to sell W’s business, resulting in a reduction of $10,000 per year of expenses. I’m thinking about the possibility of purchasing some income property so that my money works for me and helps to generate cash flow.
As 2014 comes to a close, I am thankful for the moments of joy we have, even in these less than desirable circumstances. And I am thankful for friends, family members and caregivers who provide support to me and to W.