Slip Sliding Away

Visiting Arlington National Cemetery

Visiting Arlington National Cemetery, April 2013

This morning it was back to the grind after a wonderful long weekend celebrating Memorial Day with friends and a little bit of family as well. It was my Grandmother’s 92nd birthday and we were able to attend her birthday celebration. It was so good seeing family that we don’t get to see very often.We ran a 5K run together as a family (Frances beat us all).

Frances and Brad after the 5K run.

Frances and Brad after the 5K run.

We also got to catch up with some friends we hadn’t seen in a while and we also got to hang out with some good friends that we cherish in our daily lives. So all in all, a good weekend.

I could tell when Jim first got up this morning that he was a little tired, a little off.  I started getting ready for work and he went downstairs to start his daily routine of fixing the kids breakfast and while they are eating, fixing their lunches.

I came down shortly after and he disappeared upstairs. At this point, I am technically on the clock for work, so I am talking to them as I gather my work stuff. While I am asking them if they have everything for school, it comes to light that there are no lunches or water bottles made. It is time for Frances to be walking out the door to catch the bus and I am supposed to be getting ready for my daily phone call from the office.

Quickly, Brad, Frances and I gather in the kitchen and work as a team. I made the sandwiches, Frances got the water bottles and chips, Brad got the carrots. In less than 5 minutes we had the lunches made and packed up and we were now really ready to start the day. Nothing was said to Jim about not having them done. He came down stairs about the time we were finishing up and didn’t say anything. I couldn’t quite tell if he recognized what we were doing and that he typically is the one undertaking this morning task. All of this is bittersweet.

Bitter because he didn’t do them and didn’t seem to understand or realize that he didn’t. Sweet because I caught a glimpse of the team the kids and I will make; taking care of him and ourselves and our lives. They were great. Didn’t complain, just jumped into action and did their parts.

To a person reading this who hasn’t been affected by someone with Alzheimer’s, it might seem like a trivial task that we ended up having take on unexpectedly. No big deal. To us, the ones watching a loved one slowly, very slowly slip away, this was a slip. This was a daily task that Jim has done since January of 2012. Today was a day that will blend into others, eventually being forgotten, but for a moment, today was another turning point. He might remember tomorrow to do the lunches and he might not. I will have to make sure I am checking behind him. I don’t want to come barging in and take over his morning rituals. It is hard enough on him to not be able to do many of the tasks he did before. As a man, a very proud man, this is extremely hard for him.

One night he was emptying the dishwasher and he was in a rare mood of feeling sorry for himself. This happens about every 7 or 8 months for Jim. Very rare. As our conversation was progressing, he made a statement that really struck home, “ All I am good for now is laundry, dishes and housework.” What could I say? I reassured him that wasn’t true, he was still able to do many things I couldn’t and that he was still doing a lot that helps our family. I gave him the example that for many years that was my job around here and that he had always assured me how important it was. But deep down we both knew he was right. He is no longer part of the “working society”. He is no longer part of the daily commute, the water cooler chats, the lunches with colleagues, the business trips and deadlines,the contribution to society and all of the things that those of us who are working take for granted.

Jim is living in between; He remembers, knows and understands what is happening and who he was. He is not yet at the point he doesn’t remember his jobs and co-workers and being that person. But he also has a bit of a fog and aloofness that keeps him from being able to rejoin that culture again.

I hate it for him. I try to remind him often how much we love him and that we are ok. But, he knows. He knows that things are different and will always be different.

I wish I could just make all of this go away.

Jim, Brad and Frances at Arlington National Cemetery  April 2013.

Jim, Brad and Frances at Arlington National Cemetery April 2013.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (11)

11 Responses to “Slip Sliding Away”

  1. Marsha Carpenter says:

    I wish I didn’t understand everything you wrote, but I do. Two months ago my husband could run the vacumn, empty the dishwasher (although sometimes dishes were in odd places) take his own shower, remember to brush his teeth, take his pills. His daughter called three days ago & he didn’t know who she was, he does not remember the 4 falls in the last month & 1/2 or the ER trips. Slipping away, bit by bit. Sitting and looking at the floor, or sleeping – his daily routine. I can’t even imagine it with children. All I can say is that they are learning in the most difficult way that someone they love needs help and are giving it without being asked. This is a lesson you could not otherwise have taught them in such a real way. Again, you are constantly in my thoughts & prayers. Take every day as it comes, sometimes one minute at a time.

  2. linda says:

    My sisinlaw once made my husband and i breakfast (a bagel) three times in a row…And we didnt want to hurt her feelings…..finally just told her we were full…..

  3. linda says:

    Now her husband and i can giggle about her. Phases…that was the getting stuck era….doing things or saying things over and over…now we long for her voice…

  4. Dennis DuBois says:

    Again, I say, I feel your pain! My wife is now in a nursing home. It has been almost 10 years since she was first diagnosed. The first few years were the toughest. When she was still aware of what was happening, and smart enough to know that nothing could be done to stop it. It was the most helpless feeling in the world, seeing her pain, and not being able to do anything but be there for her. It was truly a blessing when she progressed to the point of not knowing. Today she can no longer walk or talk, but I can still get her to smile and laugh…and that gets me through my day! Hang in there, you are not alone!

  5. treon says:

    I KNOW JUST HOW U FEEL AND MY HEART GOES OUT TO U AND YOUR PRECIOUS FAMILY. MY MOTHER WAS DIAGNOSED WITH THIS DISEASE IN 2007 THAT STEALS A HUMAN MIND AND LEAVES DARKNESS,CONFUSION,FRIGHT AND EVIL AT TIMES.I HAD TO QUIT MY JOB AS A NURSE IN 2008 TO CARE FOR HER. IT BECAME A 24/7 JOB. UP ALL NITE TRYING TO KEEP HER IN THE HOUSE AND IN THE BED.SHE WAS VERY VIOLENT AT TIMES ,ESPECIALLY WHEN I LEFT HER. I WENT NO WHERE FOR 4 YRS. SHE FELL IN 2011 AND FRACTURED HER HIP AND SHOULDER. HAD TO PUT HER IN NURSING HOME FOR REHAB. SHE REFUSED REHAB AND SO I WAS NOT ABLE TO BRING HER HOME. THIS WAS THE BEGINNING OF THE END FOR MY MOTHER. HER DIAGNOSIS WAS ALZHEIMERS BUT THE NURSING HOME WAS HER DEMISE. SHE LASTED TIL JAN.31 2011. AT LAST NOTHING WAS STEALING FROM MY MOTHER. SHE WAS SAFE WITH GOD. I CANNOT IMAGINE LOSING MY HUSBAND TO THIS DISEASE. BECAUSE U BECOME PARENT TO YOUR OWN HUSBAND AND THEN ALL OF HIS RESPONSIBILITIES BECOME YOURS AND SOME OF YOURS BECOME YOUR KIDS. IT STEALS FROM U AND YOUR LOVED ONES. I WILL BE PRAYING FOR U AND YOUR KIDS,AND MOSTLY FOR YOUR HUSBAND BECAUSE IT IS SO LONELY IN THE DARK.GOD BLESS U ALL.

  6. treon says:

    I KNOW JUST HOW U FEEL AND MY HEART GOES OUT TO U AND YOUR PRECIOUS FAMILY. MY MOTHER WAS DIAGNOSED WITH THIS DISEASE IN 2007 THAT STEALS A HUMAN MIND AND LEAVES DARKNESS,CONFUSION,FRIGHT AND EVIL AT TIMES.I HAD TO QUIT MY JOB AS A NURSE IN 2008 TO CARE FOR HER. IT BECAME A 24/7 JOB. UP ALL NITE TRYING TO KEEP HER IN THE HOUSE AND IN THE BED.SHE WAS VERY VIOLENT AT TIMES ,ESPECIALLY WHEN I LEFT HER. I WENT NO WHERE FOR 4 YRS. SHE FELL IN 2011 AND FRACTURED HER HIP AND SHOULDER. HAD TO PUT HER IN NURSING HOME FOR REHAB. SHE REFUSED REHAB AND SO I WAS NOT ABLE TO BRING HER HOME. THIS WAS THE BEGINNING OF THE END FOR MY MOTHER. HER DIAGNOSIS WAS ALZHEIMERS BUT THE NURSING HOME WAS HER DEMISE. SHE LASTED TIL JAN.31 2012. AT LAST NOTHING WAS STEALING FROM MY MOTHER. SHE WAS SAFE WITH GOD. I CANNOT IMAGINE LOSING MY HUSBAND TO THIS DISEASE. BECAUSE U BECOME PARENT TO YOUR OWN HUSBAND AND THEN ALL OF HIS RESPONSIBILITIES BECOME YOURS AND SOME OF YOURS BECOME YOUR KIDS. IT STEALS FROM U AND YOUR LOVED ONES. I WILL BE PRAYING FOR U AND YOUR KIDS,AND MOSTLY FOR YOUR HUSBAND BECAUSE IT IS SO LONELY IN THE DARK.GOD BLESS U ALL.

  7. Mary says:

    “I wish I could just make all of this go away.” You could have lifted that directly from my own blog. I know how you feel for sure. I’m impressed that your husband was able to get out of bed after such a social weekend. Mine would have had to sleep until 10 for several days before he’d be back to normal. Socializing is exhausting for him. Whenever there is a family event, he’ll step up, often demonstrating a sense of humor and talkativeness I thought were gone for good. But it takes a lot of extra sleep for him to recover.

    Some good advice from Langston Hughes:
    “Hold fast to dreams,
    For if dreams die
    Life is a broken-winged bird,
    That cannot fly.”

  8. Robin Walker says:

    Not only do I care for people with dementia, my grandfather suffered from the disease. I was not in the same state and when I went to visit, I couldn’t believe how fast he declined. I agree with Dennis Du Bois. It is so much easier on the people when they get to the point where they don’t know. It is so sad watching them get there. With 24 people in my care they are all in different stages. The most difficult as you can imaging are the ones who still have some cognitive ability. No short term memory, but knowledge they are losing something they aren’t going to get back.

  9. Debbie says:

    What a wonderful weekend you had! Hold on tight to that and your family. Your children sound like such blessings.

  10. Lee Ann says:

    I told you how my exhusband had a severe mental illness. In the next 5 years, he was in and out of a mental hospital many many times. I used to go to Church (Catholic Mass Daily) praying, “Please make it go away. Please make him better.” Well, it didn’t work. It didn’t get better. I just had to learn to deal with things as they were.

    One of my favorite quotes is “Life is change. Everything changes. Whether you walk through it with your head held high, or are dragged through it kicking and screaming, its still going to change. ” I told a friend who was going through basement floods due to the rain, losing valuable things she had put on pallets (the water was over 14″ and ruined the stuff on the pallets) that I think maturity is going through so much stuff in your life, that when something bad happens afterward, its easy to say, “I’ve handled worse than this. I can get through this with ease.”

  11. Michelle Fox says:

    I think you handled the situation beautifully. It is so sad that dear hubby will not be able to do the things he use to do bit try telling him this is our new normal and praise, praise. He alone has to come to terms with his illness but you and the kids are his anchor. Just temper yourself my dear, unfortunately, you have a long road ahead. Have you been on the site Caring.com.? They have chat rooms according to your loved one’s level. In my group, the people are loving, funny, caring..all good adjectives. You can participate as much or little as you want. Check it out, it might be a good outlet….

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