I Reached for Him and He Was't There

Not every morning, but some mornings it happens. I roll over, barely awake, fully expecting that he will be there. But he's not. My brain quickly makes the adjustment...It's incredibly sad. But I don't dwell on it. I get up, out of bed and start my day.

Jim's birthday was Saturday; he is 69. I had a small gathering to celebrate: our good friends Mike and Sally (Mike has been a lifesaver throughout this whole dementia journey) and his brother Bill. We used the fireplace room, which is a quiet, small room with table and chairs. The door can be closed for privacy. We had the Ultimate Chocolate Cake from Wegmans, ice cream, balloons and presents.

It was interesting to watch Jim open his presents. It almost reminded me of a very small child at Christmas, who is more interested in the paper, the box and the bag. Jim barely looked at the gifts, but enjoyed handling and folding the paper and the bag. We captured some nice photos of Jim and me in front of the fireplace.

Jim's brother lives about 3 hours away. He periodically will come in to see his brother. Bill has always had a controlling personality, albeit in a quiet and polite manner. Before he became ill, Jim could always hold his own with his brother, setting him straight and refusing to allow this personality defect to interfere with our lives.

Since Jim became ill, Bill has been unable to alter his approach with his brother.  When visiting, Bill would quietly insist that Jim do something; if Jim didn't respond, Bill would persist and  insist, until Jim blew up at him. The crazy thing is that it is always  over inconsequential things. Nothing that is important. (Example: Bill offered to help Jim open his milk carton. Jim said "no". Bill persisted by saying "I'm only trying to help you." Jim again says "no". Bill then proceeds to grab the milk carton to open it for him. Jim gets angry, swears at his brother and then walks away, now in no mood for his meal.

I have counseled Bill many times, and so has our friend Mike. This weekend in particular, I wanted to make sure that our birthday gathering was not ruined by such foolishness. I was very direct with Bill, warning him to never contradict or insist, unless it was something that was life threatening or dangerous. He finally got the message!

But what has happened now is that he hardly says a word to Jim, just kind of sits there observing. I'm realizing that he doesn't know how to interact with his brother any longer. Jim still has residual feelings about all of this. While Jim's memory is so poor, he would never be able to recount what had happened, he remembers how someone makes him feel. Yesterday when he saw his brother arriving on the unit, he said to me quietly "What an a$$*@#%".

Maybe, eventually, Bill will figure out how to interact with his brother. Mike is a good support in this area. He too, has been very direct with Bill. We'll see. But either way, it is no longer a concern to me. I wish there was a better relationship, but I can't control that. All I can do is to protect my sweetheart from this type of upsetting interaction.

Our house is on the market. I have a lot of mixed feelings about it. On the one hand, it is emotionally difficult, as this is a home we designed and built together. So many lovely, happy memories. But on the other hand, I cannot afford to remain in this house. Plus, the house is just to big for one person, and the one acre yard and landscaping is just overwhelming to me.

It's been a busy couple of weeks, getting everything pristine and ready for the photographer and the videographer. There actually is a youtube tour of our home! Very professionally done. Someone requested a showing for tomorrow afternoon. It's not a great time of year to sell a house. This Spring I expect that things will pick up.

My counselor, Dr. M. has been an amazing support to me. I continue to see her on a weekly basis. She has created a safe place for me to share what is going on in my life. She made the observation that by moving now, while I still have the essence of Jim with me, it might be easier psychologically. Given the predictable progression of this disease, if I wait too long to move, it might end up being a compounded loss; the loss of the essence of my sweetheart, and the loss of our home that we shared together. If I move now (or in the near future), it gives me a chance to create a "home sweet home" while I still have him.

Last week I met with our financial guy, Geoff, to go over some of the financial concerns that have been on my mind. As always, Geoff helps me to look at all angles of financial decisions I am making. He recognizes the importance of looking at the psychological factors that weigh into the financial decisions we make (quality of life, the happiness factor, comfort level etc.).

He commented that he was impressed with all that I have accomplished in the last 3 - 6 months. That surprised me, but as I think about it, there really have been a lot of life changes for us during this time period. But I never could have done it without the amazing support from all of the wonderful people in my life.

And that includes all of you, my dear readers. Once again, my heart is lighter. Thanks so much for listening.

I'm So Happy With You...Will You Marry Me?

As I've mentioned before, Jim thinks that he is at home. When he sees me, he thinks that I am returning home from work. What a blessing! When I leave after spending some time  with him, I always make sure he is involved in some kind of activity. Then I lean over, whisper in his ear "I'm going to the bathroom. I'll be right back." He replies "OK". I then give him a kiss on the cheek and head out to go home. It has worked so well. No angst over me leaving for the day. His memory is such that he won't remember that I was there just a few minutes ago. Staff know to say that I am at work and will be home soon, should he ask about me.

The other day when I arrived for the afternoon he was just finishing lunch. He stood up, walked over to greet me, hugged me tight and said "Carole, I am so happy with you. Will you marry me?" Moments like this I will treasure forever. How lucky am I that he still knows me, still loves me madly, and is able to tell me every day how much he loves me.

Jim has had some new challenges. His incontinence is increasing and he wears pull-ups to protect his clothing. At home, we were just starting to have some intermittent problems in this area. At home he never agreed to wearing anything other than his usual underwear. But at the care home, I have removed all of his usual underwear so that the only option is the pull-ups.

I go to great lengths to disguise them. I've even purchased some on my own that are a blue/gray color, rather than the white. As I help him dress, I put the pull-up in the athletic pants so that he is not as likely to notice as he would if it involved a two-step process.

The other morning (I had not yet arrived) he struck a staff person in the face twice as she and another staff person were trying to assist him in changing after he had been incontinent with a bowel movement. I talked to the two staff who were involved. They were wonderful. I was able to express my concern for their safety. They both assured me that they were not hurt, and that these situations go with the job of caring for folks with dementia.

I am deeply grateful for such kind, caring and understanding caregivers for Jim.

My other thought on all of this is to imagine how difficult this change must be for Jim. At some level I am sure he is embarrassed. He also is likely upset and angry that he no longer has the control over all of his bodily functions. It must be so hard for him!

He is not always agreeable to showering. Usually I am the one that is helping him. I seem to have better luck than the staff at getting him to agree. I usually turn it into a light-hearted experience. I get the water nice and warm and then ask him if he wants to take a shower with me. His face lights up and he almost always says yes!

Once his clothes are off and he is in the shower, he is distracted enough where he does not question the fact that I still have my clothes on. I help him wash his hair. He can still wash his body, with some prompting and a little help with the soap.

The weather on the East coast has been brutal. Our neighborhood has not been spared. Thursday I had a nail-biting commute between home and the nursing home. The route there involves a very steep hill going down, and then coming up. I witnessed several vehicles trying to get traction, but unable to. The salt and sand doesn't work as well in frigid temperatures. In addition, the rate of snowfall made it difficult for the plows to keep up. The howling winds and blowing snow made visibility almost non-existent. Wind chill factors have been around minus 20 degrees Fahrenheit.

Here's a picture taken this morning from my window,  looking out onto our deck.

I made the wise decision to stay home yesterday and today. We've had well over a foot of snowfall in the last two days with another 8 - 12 inches today. Tomorrow the snow will stop and I'll head up again. It is hard on me when I don't see Jim. I know he is well cared for, safe and contented. But I still miss him when I don't see him everyday.

I've met with a realtor and plan to put my house on the market in the near future. In many ways I am very pragmatic, and this decision is a no-brainer. The size, the expense and the upkeep are way too much for one person alone. But there is another part of me that realizes that I am closing the door on a chapter in our lives. A chapter that was full of love, life and wonderful experiences. Of course I know that Jim will never come home. He will never get better. His decline is inevitable. I'm stating the obvious. But on another level my heart aches. It's closure on a very wonderful part of our life.

I'm looking at possibly purchasing a condo not too far from here. It's about 1,000 square feet. Includes a garage for these terrible winters. I want to stay in the area so that I can continue to be close to where Jim is and where my friends are.

2017 was a year of turmoil, sadness and change. I look to 2018 as a year where my sweetheart is at last contented and safe. And I will do my best to cope with the challenges that life has sent our way.

Another post is written. Thanks so much for letting me share with you what is on my heart and on my mind. I'm so grateful for the amazing support I receive from each one of you!