JOAN’S BLOG – TUESDAY, NOVEMBER 29, 2011 – THE FAMILY TELLS IT LIKE IT IS

A mere 3 weeks ago, I wrote a blog entitled “Is Our Perspective Skewed?”  In it, I questioned whether we see our spouses as worse, better, or as they are truly functioning. Up until recently, it seemed to me that I was the only one recognizing Sid’s cognitive decline. It was important to me, as I stated in the blog, to understand his actual abilities because “I want to allow him to do as much as he is able for as long as he is able. I do not want to limit activities in which he is still able to participate. I do not want to place him in Day Care if he is not ready. Conversely, I do not want to expect more from him than he is capable of doing, thus frustrating both of us.”

As most of you are aware, Sid and I spent Thanksgiving week at my sister’s house in Chicago with a large contingent of friends and relatives. Actually, considering the drastic change in his routine, Sid did quite well during the week. He was content to sit in the lounge chair in the family room, while activity and noise swirled around him. On two occasions, there were at least a dozen people in the house, and although we had a few days of peace and quiet, there was often at least a toddler and an infant in the house. A rather fussy infant, and an energizer bunny toddler, who ran, jumped, climbed, danced, and never sat still for an instant.

However, at least 3 of my outside observers answered my blog question in the affirmative. According to them, yes, my perspective is skewed. I am seeing him as more capable than he is.

After a few days, I sat down with our son, who had flown in from California, and had not seen his father since last Thanksgiving. I asked him what he thought of Sid’s situation, and what he thought I should be doing about it. He told me point blank that Dad had declined drastically physically, of which I was aware - one would have to be blind not to see the extent of that disability. It was his admonition to me that was quite jolting. He said that I should stop expecting him to get better, get him into a wheelchair, and on pain medication that will improve his quality of life, as he is in constant shoulder, back, and knee pain. The stress fractures in his knees are worsening, not improving.

He said I need to save myself frustration, aggravation, and anger, by not expecting anything cognitive from him, and just do all the thinking and decision making for him. I thought I was doing that, but apparently when I am observed by others, it appears to them that I tell him too much, expect too much of him, and become upset and stressed when he fails to respond properly. My sister, not knowing what my son had said to me, sat me down, and repeated his advice almost word for word. My Miami friend was visiting her son in Chicago, so she came to see us for an evening. She is a doctor who I see fairly regularly, as we live only 2 hours from each other. Even she told me that he was pretty bad off, and I needed respite.

How ironic. Four years ago, everyone thought I was crazy, exaggerating, and a drama queen. They saw nothing wrong with Sid. Now they think he is almost beyond my caregiving ability, and I need a long rest away from him. His confusion, memory loss, and cognitive decline are more than apparent to all who see him. My sister’s observations tell her that almost everything I say sails right over Sid’s head, and I am fooling myself if I think otherwise.

Everyone pitched in and helped during the week, so I could rest, nap, and be relieved of Sid duty. They thought I needed it more than even I thought I did.

In the 4 ½ years since I launched this website, I have heard countless caregivers say that they waited far too long to send their spouses to Day Care; to get in home help; to place them in a facility. They waited until their own mental and physical health was almost destroyed. My family seems to think that is what will happen to me. I get it. I am listening. I will take whatever funding is available for whatever services are available without waiting until I think the time is right. I urge you to do the same. Spousal caregiving need not place any of us in a hospital bed of our own.  

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