Letting go and Surviving.

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This week I dropped Jim off at a respite care program for a 5 hour stay. It sounds like such a perfect solution to so many problems. But as I took him, I had flashbacks of taking the kids to preschool. Except instead of walking to the end of our block, we drove for 40 minutes. And this time, I wasn’t full of smiles (well, I was but I wasn’t feeling like it on the inside). I was sad. There was something unnatural about the whole scenario. I was hoping he wouldn’t mind being there with people much older than him (he didn’t) and I was thinking that I can’t believe I am taking my husband to a freakin’ daycare. DAYCARE!

When you take your young children to preschool, you accept and know they will be moving onward and upward to more school and learning and growing. It is the beginning of endless possibilities and a joyous, happy occasion. When I took Jim to his “school”, he was happy, but I know it is the start of something less uplifting and hopeful. It is the beginning of something we have known is coming, but now that it is here, it still seems surreal and unimaginable. He seemed content. He enjoyed the man who came to play guitar. He enjoyed the service dog. He enjoyed counting out kernels of corn for the church service on Sunday. He was at ease. And I was….what is the word…heartbroken.

One of the realizations I have faced in recent years is letting go. Not just of Jim, but of Frances and Brad. When they were younger, I was in “control”. I knew who their friends were, I arranged their playdates, I was in their classrooms as the room mom and attended all of their school events, all of their practices and games and was completely immersed in their world. There were very few facets of their life I wasn’t aware of. As they grew older, I gave them space, but for the most part, I was still very involved and “there”. Over the past year or so, I have had to let go. LET GO. I know this is a natural process for aging children, but somehow I seem to be doing it by myself, in huge doses, as Jim gets  less involved with much of anything with them and I get more involved with his day to day activities. So not only am I letting them go, I am doing so without getting my relationship back with my husband.

Since Jim can’t drive anymore, I have to rely on other parents and friends to help out. I can’t be at every practice and sometimes I can’t be at every game. That hurts. Sometimes it has nothing to do with Jim’s disease, just timing. But, if he could still drive, at least one of us would be able to be there. Now, it is down to just one of us and then I have to cover him as well and make sure both kids have rides, all of their gear, water bottles, any money or whatever is needed that particular day and have dinner ready, homework checked and at some point make sure Jim has taken a shower and has on clean clothes. At first, my conscious revolted. I didn’t want to not be a part of their games or practices or events of any kind. That wasn’t how it was for our family. But sometimes, life dictates more than you do. Frances has had several out of town softball tournaments and I needed to stay home with Jim and Brad. Guess what? She had a great time. She learned how other families traveled and packed and how to make sure she covered a few things on her own. Instead of worrying the whole time and stressing, I had to let go. I chose to concentrate on the fact she was being introduced and exposed to new ways of doing things and seeing how other families interact and live. Families that have two healthy parents and don’t have something quite so ominous hanging in the air. I am choosing to look at this as a way for my children to grow and learn and become even more independent. But boy, does it bite just a bit to let them go so soon.

Brad has had to get used to sometimes having us there and sometimes not. I try to make sure I show him undivided attention and ask lots of questions after the fact. Both kids seem to take it all in stride, but I often wonder if there are long term reprocussions. I suppose only time will tell. But the part that I despise the most is not being able to talk to Jim about all of this. I have finally started to learn that there won’t be a reaction and I will just be disappointed and it isn’t worth it. So I keep quiet and process everything in my mind.

So there it is…a possible silent, hidden positive from this undesirable situation; my kids learn some independence and they learn a lot more than our little family could ever teach them. I realize that I may be missing them, but they are growing and taking in concepts that will only add to their ability to cope in this great big world. They are seeing things that I would never teach them. They are appreciating our times together. They are leaving me behind a little sooner than I think I would normally be ready for, but I am grateful that other families have stepped up and taken them in and shown them a world I can’t. It is a bitter pill to swallow, but one I would eventually find being forced down my throat whether I liked it or not. Maybe having them learn so much now will make it easier when they are completely out of the house. I try not to get ahead of myself, but when the day to day humdrums get to me, I think of my future, our future….obviously I have no idea what lies ahead, but I do wonder how our holidays will be, how our daily interactions will wind up. I am having to let go of Jim, but I am also having to let go of my children. What am I capable of holding onto? What is left for me?

Yep….The Garner Foundation. I know with all of my heart that is my saving grace. I am going to help others. I am going to make a difference. I am going to show my children how to give back. So many help us in so, so, so many ways. I could never repay all of them. We could never repay all of them. But, this foundation will. I know it and believe it. I just wish I could keep Jim engaged and involved for a while longer. He would be so good and so helpful.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (6)

6 Responses to “Letting go and Surviving.”

  1. Connie Howard says:

    Karen- I about to put Glenn in a 10 bed facility about 1/2 hour from me. It is extremely difficult to let and and also feel like I am not failing him but doing whatus beat for him. I sent you an email about wanting to be a part of the foundation .i want to be able to help others and seek ways to meet the needs of others like us. I feel like we are atuck and fall through the cracks because of the young age and all that goes with that. I am a little ahead if you in this process and so understand and empathize with you.

  2. Nancy says:

    As a child of an early onset father who died in 1971 at the age of 58 I can certainly chime into to your thoughts. Most of all they are learning compassion. The positive outcome for me was that I started the local Alzheimer’s chapter in 1982. I am still a active family support group facilitator (now for 32 years) and head up a ministry in our church called Alongside where we recruit and train teams of people to fill in the gaps for families with Alzheimer”s Disease and other illnesses. I have “used what was put into my cup” and your children will too, just as you are doing through the Garner Foundation. Thanks for being so transparent in your journey. Bless you.

  3. I journal my feeling and I began in 1982 when I faced an empty nest. I bragged that it wasn’t a big deal but reading my journal I realize it was a big deal. Five years ago in May I had to let go of Joe. At the time he was lucid some of the time. Now beginning year twelve with Alzheimer’s he is in his own world. At times I get in and for that I am thankful. We came into this world naked of emotional ties and that is the way we will depart but with years of emotional ties thankfully.

  4. Wendy Sweigert says:

    I have someone coming out this week from the state to asses my husband’s situation to hopefully see that I need some respite. If they agree, then I will get some money to pay for an adult day program a few hours a week so I can take some time for me…,still makes me sad, but I have to do it

  5. Karen, what a beautiful gift you bring to the Alzheimer’s community, with your honest reflections and now the Garner Foundation. You, and those like you, fighting the good fight, you will help us find the end. We know it’s within site, but it is so heartbreaking that it will not come in time to save beautiful men like Jim. Thank you, Karen, for fighting. You and the Garner Foundation will make a difference.

  6. Lee Ann says:

    Working long term care and special care units, the respite care and placementis far easier on the patient than it is on the spouse. Many times, getting a new patient, when the (usually the man) patient is in the bathroom, I take a moment and ask the poor woman gritting her teeth, “And how are you doing with all this?” Answers depend on how much they want to divulge. Many will talk about how sad they feel, how helpless they feel, etc. Sometimes the wife will ungrit her teeth and say, “This is supposed to be my job to take care of him. If he’s got to be here, its because I have failed and I’m not doing my job.” I usually tell them that its now my turn to be the nurse. She gets to be the bride (wife). no more struggling with aphysically bigger person that is falling, having accidents in the bathroom, etc. I take care of that, and the wife gets to hold his hand, and enjoy him again. I encourage them to come for meals all the time, activities, hang out there all she can. Its good for both of them. And pretty soon, the wife is helping withactivities and feeling she belongs to the group too. It is sad. but its just a bit different, that’s all.

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