Grief in Process

Miklos has always been an extremely modest about his body and bodily functions. He has closed the shade on the slider so that people walking around the ponds behind our townhouse can’t look into the dining room and see him eating in his pajamas. We hadn’t even been in the bathroom at the same time until we had been married for many years. But this past week, I was shocked to see that he had gone downstairs stark naked to use the toilet in the powder room rather than the upstairs bathroom.

I was using the sink and vanity counter upstairs, but it would have been very easy to step into the shower/toilet section and close the connecting door. That would certainly have been more modest than traipsing through the house, with the shade on the glider halfway open.

The next day, he didn’t close the glider shade while he was eating breakfast in his pajamas, but without his bathrobe. Certainly not as radical as parading naked, but still a change of behavior. Those are only two instances, and it doesn’t necessarily mean that it will continue. Losing filters is a common enough symptom. It certainly bears close watching.

So far, it hasn’t affected his conversation, as it does with many older people, even without dementia. He doesn’t say everything that enters his mind. He is unfailingly kind in his speech. I have mused before that perhaps people simply become more of themselves as they age, rather than necessarily becoming meaner.

I am very hopeful that the two events of the past week, when Miklos was less than modest, are anomalies and not the beginning of more radical decline.

My husband has always been a gregarious person. He has recently developed the habit of going over to tables of strangers in restaurants to say that he likes the way they are talking to one another, or he likes their smile, or just to ask where they are from. He always says something kind, and so far he has been well received or at least tolerated. Some of those strangers that he greets may need to have a kind word from a strange old man to make their day.

Of course, he also always flirts with little children. I wonder what they think of his missing and rotting teeth when he smiles at them. At some point, he may begin to look too scary. If that happens, it will be a very sad day.

I suspect that this new habit of talking to strangers makes up in some way for the conversations he used to have with friends whom he would meet for coffee or lunch when he was still driving. I wish that more of those friends would take the time to visit him at home. It must be quite lonely in his mind as the memory fades. More social connection would be so good for him.

Recently, his physical health has been improving. A new medication gives him a bit more energy and his caregivers always make sure he walks. He has even quit arguing with me about taking a walk, although he frequently wants to postpone it. Because improved physical health may lead to a longer life, I am extremely grateful that his disposition has become even kinder. So many people with dementia become angry and mean, even violent. Perhaps it is true that as we age, and especially as we decline, we become more like our inner selves.

I find that I, too, will now give compliments to strangers. I don’t interrupt their meals, but if I am standing in line at the grocery store, or stopping at the same red light (as a pedestrian), I will say that they have beautiful eyes, or a great sense of style, or whatever else it is about them that I appreciate. Maybe we can all learn from Miklos to reach out in kindness and make the world a kinder place.

Jewish Family and Children Services has a grant to provide home care for survivors of the Shoah. Miklos has just been assigned a young care-giver named Kat for sixteen hours a week. Muir Palliative Care has also enrolled him in the Guide Program through which he receives another eight hours a week from a woman named Carnisha. He is sure that he needs no assistance and refuses to let either do anything for him. He says. angrily, “I don’t need a babysitter.” Of course, he is still competent in a great many things, but he will not always be. I know he that he can sometimes be a danger to himself and there will come a time when he will need help showering and dressing.

He tells me repeatedly that it’s a waste of money. I remind him that he we are not paying and that he is entitled to it. I also tell him that they are a help to me, and he seems to accept that more willingly than help for himself. It is true. They wash dishes, do the laundry, vacuum, and other light housekeeping, which saves me time for other things I need to do. Best of all, it gives be the opportunity to get out and have a little more social time myself without worrying that he will burn himself or burn the house down. Recently, he did set the toaster oven for thirty-five minutes for a piece of toast. Twice he has heated the milk for his coffee dangerously hot.

He will joke with Kat, who has a contagious laugh. She brings out his worst Dad jokes. Carnisha is more serious. It took longer for him to get used to her. Even when he makes his own breakfast, as he insists on doing, he does get some extra socialization. Most importantly, he will be accustomed to having people besides me in the house and be familiar with his caregivers by the time he gets to the stage where he needs the extra help.

Recently, we welcomed dear friends for a casual supper. Bruce and Colleen are dear to us, but they had moved to Portland some years ago and we see them rarely. Bruce had been a member of a special discussion group that Miklos had organized twenty four years ago. It was an interfaith group that discussed spiritual, theological, and philosophical ideas over a weekly breakfast. Bruce has said that Miklos is his spiritual mentor. It’s a very close bond.

Bruce had also taken early retirement so that he could care for his father in the last years of his life. He is well aware of the effects of Alzheimer’s disease on both the patient and the caregiver.

Colleen’s sharp wit and Bruce’s fondness for Miklos brought out the very best in him. Miklos was witty, with clever word play, not the very odd, nonsensical things I sometimes hear. He was even able to talk about process theology in a cogent manner.

Socialization is one of the most important tools for preventing Alzheimer’s in the first place, or for ameliorating it’s effects. When I see how very well Miklos responds on these occasions, I become more determined to have guests more often.

That evening, we had some really profound conversations, but I know that even phatic communication is helpful in maintaining as much cognitive function. That is why I continue to strongly encourage Miklos to come with me when I go to Lunardi’s. Often, Miklos will say, “I just don’t feel well enough.” But I know that if he gets up and does a little bit of exercise, even if it’s just walking around the store, he will feel better. And he does! And he has very nice conversations with the butcher, the baker, and (not the candlestick maker) check-out lady.

It seems that one of my children’s primary concerns is that their father always be able to recognize them. Of course, I would also be glad if he never lost that much of his cognitive function. For several months, I was quite convinced that his physical health was deteriorating so rapidly that he would inevitably die within a few months, long before he lost the memory of his children.

Then his health stabilized, hit a new plateau. I am no longer checking for breath when I check on him in bed. He spends most of his day in bed, still. When he does get up and get dressed, he is sociable. He walks with good posture and doesn’t shuffle, when he walks at all. I doubt that most people who have casual interactions with him would suspect that he has dementia. All of his important physical systems — heart, lungs — are in excellent shape.

But I do notice that he has more difficulty understanding what is happening. He is also more reluctant to do the things that might help him maintain his mental and physical health. He is reluctant to take a shower unless he knows guests are coming. He often doesn’t get dressed if we are not going anywhere. He no longer takes a walk to build his strength. While I don’t want to be the Nag-in-Chief, sometimes I do need to strongly urge him to get up.

Last week, he said he didn’t feel up to coming with me to Lunardi’s (his favorite grocery store). I replied that I didn’t care. I expected him to get up, take a shower, get dressed and come with me. I told him that he would feel better after a shower. He asked how I knew it, and I said that he always did.

I went on downstairs, and continued doing some other things. I wasn’t at all sure that he hadn’t just gotten back into bed. When I was ready to go, I went upstairs to check on him and found him clean, shaved, and ready to dress. When we got to Lunardi’s, he was full of compliments for the staff, smiles for all the children, his usual mashed-potato jokes. He was engaged and seemed very happy.

My daughters have convinced me to quit caring about what he eats or even whether he takes his medicine. But I will continue to strongly encourage him to get up and be social. That is the best way that I can think of to help him keep his as sharp as possible for as long as possible, and that in turn, may help alleviate my daughters’ concerns about him.

However much we may hope and pray that he never loses so much awareness that he no longer recognizes us, it is not in our control. As hard as it is, we can only take it day by day.