Sunday, January 21, 2018

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.

24 comments:

Jabberwalky08 said...

Oh, Carole! The title just grabbed me this morning - that's the one thing we actually still have - reaching out during the night, a pat or hug and a warm comment - every other time of the day is so affected by the illness. I will miss it very very much when we are no longer in the same bed.
Geoff is so right - you've handled an incredible amount of change and loss at an incredible pace, and are still puttering along, dealing with everything. Glad he's there!
Recommending a movie on Netflix that we watched last night - "Losing Sight of Shore". It's actually very very inspiring, for folks in our situations.
Take care!

Carole said...

Good morning Jabberwalky! You know only too well the heartbreak of this cruel disease. We do our best to cope, but sometimes those moments come, so unexpectedly, and it all sinks in how devastating this disease is.

Thanks for the Netflix recommendation. I will definitely check it out. And thanks for all your encouragement and support along this journey!

Arkansas Patti said...

Belated Happy Birthday to Jim.Sounds like he enjoyed the party.
I do hope Bill can learn how to interact with Jim for both their sakes.
I am so pleased that Mike is still in there and being a brick.
Your counselor makes a great point few of us would realize. So glad you have such good advice and counsel at hand.
Good luck with the house selling. That is stressful under the best of circumstances. May it go surprisingly easy and well.

Carole said...

Hi Patti. Hope you are recovering well!

I purposely underpriced our home a bit, hoping that potential buyers see it as a great price, and wanting to buy it before someone else does. Hopefully it moves along quickly. I'm not sure where I will land, but even if I have to rent for a year or so, that would be ok, just to make sure that I'm not settling on something that doesn't really feel right. Dr. M. also asked me to think about what is really important to me in creating a new home sweet home for myself. I think this will help me to prioritize and not be so practical that I forget about those emotional connections that are important when we choose a place to live.

Thanks for your comment Patti.

Roberta Warshaw said...

You know, I was shocked at Jim's age. I guess I thought he was much older. I cannot even imagine all you are going through at such a relatively young age. My dad was in his 90's. I too never knew how to talk to my father. So I mostly sat and held back tears. I know it wasn't the right way to behave but I didn't know how to relate. Much as Jim's brother. It is so very hard.

Carole said...

His relatively young age is always a shock to folks. He is the youngest person on the dementia unit. Never, ever did I dream that this is what we would be facing at this point in our lives.

But, I try to be grateful for what we have, such as the fact that he is in a safe haven (for him and for me). And that he still knows me and still is able to tell me how much he loves me.

I'm sorry about your dad. Thanks for sharing your experience with me. The heartache of feeling the need to connect, but not knowing quite how to do it....well, it is just awful. Such a cruel disease to cause so much sorrow to so many people.

Thanks for your comment Roberta. It's always so good to hear from you.

Kay said...

You are so strong, Carole. Jim is lucky to have you. I can hardly believe he is so young. Ah yes, the Ultimate Chocolate Cake. I remember it well.

Anonymous said...

Your story continues to touch me. Such love there in the midst of a difficult and heart breaking reality! I loved hearing about Jim's birthday party. Good wishes and prayers for a simple, straightforward sale of your home and for you to find a good place to move to. It's so wonderful that Jim is peaceful and content in the home and that he can still express his love to you! You are doing an outstanding job and will have no regrets when you look back. Best to you, Carole, Becky

Tehachap said...

We've had a truly bad experience with a realtor we signed with to sell our home in AZ. Finally filed a formal complaint and got the contract canceled. Now I'm gunshy about selling, but it has to be done. We need to move forward. Good luck to you in selling your home -- you're so very right to sell while Jim is still with you. It would be doubly hard to sell if you were to lose him at the same time. The birthday party sounds just perfect. I feel for Jim's brother who seems to be floundering in finding a way to interact with Jim--because Jim is not the same person anymore. You are blessed to have good advisors you can turn to. May you and Jim continue to be blessed as you move through this difficult time in your lives. Hugs, Carol (aka Tehachap)

Sharon said...

Jim's BDay does sound pretty good, despite his awkward brother. Happy 69th, to Jim! I hope you have good luck with the sale of your home. I've been through it a few times and I will say that you are doing it the right way.
Take care of yourself.

Carole said...

Hi Kay. Half of the cake was left over, so I cut it into small slices and froze it. So good! The best chocolate cake I've ever had.

It helps me to remember that Jim would want me to be financially OK. He would want me to have a home that would make me happy, one that I could call home sweet home. Even though Jim is not able to help me as I make all these decisions, I like to think that if he could, he would be telling me that I'm doing just fine.

Thanks for your comment Kay.

Carole said...

Hi Becky. So good to hear from you. Thanks for your very kind words.

If Jim was not content, I would be beside myself with worry and guilt. Instead, I have this gift of contentment for both of us! How fortunate I am.

I think it has helped in that I am able to focus on what Jim and I have; and what a blessing it is. Obviously I still have my moments where I am filled with grief over the gradual loss of my sweet husband, but I have a safe place to work through those feelings with Dr. M.

And you and all the readers of my blog continue to touch me and heal me in ways I never thought possible. So grateful for that. Thanks for stopping by Becky.

Carole said...

Hi Carol. Buying and selling real estate can be so stressful. Having a realtor that you can trust makes a big difference. Sorry to hear about your bad experience. The realtor I am using is someone I had met before. He is knowledgeable has a lot of experience and is someone that I feel comfortable with.

As far as Jim's brother, I'm hoping that over time he can learn how to better communicate with his brother. Throughout his life, Bill has had troubled relationships with others, most likely due to his overly controlling personality. I just don't know if he is able (willing?) to change how he relates to his brother.

So good to hear from you Carol. Sending hugs right back your way!

Carole said...

Hi Sharon. The birthday balloons are still up in his room; probably time to take them down today. I'm so glad that we had a peaceful and meaningful celebration. I know that I am creating memories that will last my lifetime, and I'm so grateful to have this opportunity to do so.

I've always said that one of the secrets to a happy life is to surround yourself with good, caring people. And leave the rest far behind. I have managed to do that, and sure enough I find I have so much support from friends, family, professionals (Dr. M, Geoff, Dr. S); I am so blessed! And when I say friends, of course I am including you and all the other very special folks who stop by to let me know they are rooting for me :-)

Take care Sharon.

Valerie said...

I feel for Jim's brother in a way... a relative of mine reacted in a similar way when her sister went into the Alzheimer stage. She tried very hard to understand but found it awfully difficult. She told me that searching for the right thing to do or say made her feel inadequate. Hope Jim enjoyed his birthday. As for age... the dreaded disease hits early, I'm afraid. Stay well, my friend.

Carole said...

Hi Valerie. I agree with your observation. For a variety of reasons, sometimes folks don't know how to interact with someone when dementia develops. I have found that with friends and family, for the most part, others look to me to see how I am relating and interacting with Jim. Most times that is enough, and the awkwardness of the situation passes.

Fortunately I don't try to control that which I have no influence or power. I try to stay focused on what positives I can bring to the situation.

Thanks for your comment and your kind words Valerie!

Friko said...

My heart breaks for you. And still you are strong and performing miracles.
Please, take it easy, allow yourself time and take care of yourself. I know how easy it is to drive oneself into a state of exhaustion. Take a day off occasionally. You know that I am speaking from experience and certainly have no wish to force my opinions on to you.

(I have been reading every post)

Carole said...

So good to hear from you Friko. Your words are especially comforting and reassuring to me. You too have walked this very sad journey, for which the ending is oh so heartbreaking. I follow your blog, and I am learning from you, as you cope with this next phase of your life without your beloved.

I take your words to heart, and I do make sure that I am doing things to take care of myself too.

Thanks so much for stopping by Friko.

Mage said...

I so appreciate you writing here. We had Duck until he faded away. now we have Poolie...she fading because of the pain meds for her cancer.

troutbirder said...

I've been fortunate without have to deal with many inappropriate responses. Though Barb was against informing our son of her diagnosis etc. we live in a small town with many friends and neighbors. Their are few secrets here which in fifty years here of teaching and living for both of us can cut both ways. Gossips not good. Neighborliness and helping is wonderful. We now have a number of "guardian" angels friends, neighbors former students who include our bankers, lawyers, nurses, plumbers, etc. Still some don't know what to say to someone who is slowly dying and I understand that.... This past weeks three days as a volunteer at Mayo Abbigail Van Buren Alzheimer Center has been especially difficult for Barb with periods of anger and agitation. Of course for them they know how to deal with it's hard on both of us. This week after two years of collecting information and sources of help Statewide and in two different counties, one rich and with many people and our with few people and resources, at my wits end Im ready to reach out for help. This is the beginning of the next stage...:)

Carole said...

Hi Mage. I'm so sorry to hear about Poolie. Our bodies fail us, and even though modern medicine has given a lot of hope and a lot of help for so many diseases, it can't protect us from everything. Pain medication can be a blessing, but at the same time it can cause some unwanted side effects.

Thanks for your comment Mage, and do take care.

Carole said...

Hi Ray. I'm so glad that you have your guardian angels in your town to be of help and support to you and your wife. I'm sorry to hear about your wife's periods of anger and agitation. It is one of the most difficult aspects of dementia. Not every person with dementia has it, but it is fairly common, and science/medicine still does not have definitive ways that are known to work to help with this very difficult aspect of dementia.

I just looked up the Mayo Abigail Van Buren Alzheimer Research Center. I did not realize that "Dear Abby" suffered from dementia.

Hang in there Ray. I'm rooting for you. Your wife is fortunate to have you by her side. Keep in touch and let me know how things are going for both of you.

Dr Sock said...

Carole, I love the comment that you made above: “It helps me to remember that Jim would want me to be financially OK. He would want me to have a home that would make me happy, . . . he would be telling me that I'm doing just fine.” You are wise to remember Jim the way he was before his illness, and, of course, he would want the best for his sweetheart.

When I lost my first husband, one thing that made me sad was that some people only wanted to talk about his death rather than remembering the person he was in life. But I know that those many years that you shared together are something that you can always treasure.

Jude

Carole said...

Hi Jude. I am ever so grateful that I still have the essence of who he is! Sometimes when I arrive at the care home to see him, he is laying on his bed with his eyes closed. I sit on the bed next to him, rub his back a bit, lean over and kiss him and tell him I love him. He always opens his eyes and says softly "I love you too Carole". These tender memories will be with me forever.

When a spouse dies, friends and family often don't know what to say, how to respond, and I'm guessing that the response you had when your first husband passed is typical. But you and I know that for emotional survival, we focus and cherish on the memories of our life together.

Thanks so much for your comment Jude.