I love my kids

Frances and Brad, Sept. 2006

Frances and Brad, Sept. 2006

I am like 99.9% of the parents in this world….I LOVE my kids. I love watching them play sports and participate in school activities and I love hanging out with them (most of the time). I love the chats we have and I love the laughs at the dinner table. I love that they make me a better person. I love teaching them about the world and I love it even more when they teach me a thing or two. They are actually pretty good behavioral wise and both of them show me love and gratitude on a daily basis. I recognize how rare this can be with a 14 year old and a 10 year old and I am very, very grateful. I suck it up and savor every moment. Sometimes to the point of being a little too emotional and a little too sappy. I realize it won’t always be this way and appreciate what I have right now. They are by no means perfect, but I am proud and I recognize how seriously lucky I am to have them in my life.

There are moments I get really hard on them for not wanting to be with Jim more or for getting frustrated with him; just like I do. I don’t praise them enough for when they do show patience and when they are participating in his care. As with most of life’s moments, we see them clearer when they are firmly behind us. It is important to me to learn from these lessons and to keep trying to become a better mom, a better wife, a better person. The end result will save me from my self -destructive ways and from wallowing into a mass of self pity. It is difficult to feel sorry for yourself if you are constantly critical within your own decisions and behaviors. Some say I am too hard on myself, but when I consider the alternative of accepting my situation and letting myself fall to pieces over and over or become less of a person than I should or can be, I am not thrilled with what that person looks like. I would fall into a deeper hole because I would be so disgusted by looking into the mirror and not liking what I saw. I suppose without Jim to keep me in check, I am forced to do it myself and this is the way I can. I sometimes rely on friends and family, but they try to be too delicate with me for fear of making things worse or just because they want to protect me more than hurt me. Yes, it would hurt to hear something awful about myself, but in the end game, it would be better for me, Jim and the kids.

I often forget how different their childhood is from mine. I remember growing up being terrified for a while that my parents would die; either from cancer, a car wreck or something that would take them away from me. I can vividly remember asking them when they were going to die and begging them to never leave me. I still feel that way. I think most kids go through this phase at some point. Fortunately, those fears were never realized and I am blessed to still have my parents in my life, helping me as much now as they did when I was living in their home.

On the contrary: Frances and Brad have basically always known that their Dad will not be around forever. They don’t complain about it. Actually, they never mention it. I suppose it is just their “normal”. When we started realizing something was terribly wrong with Jim, Brad was just 5. He doesn’t remember anything different. He doesn’t have a carefree life without the burden of Alzheimer’s Disease. Ever. It is as engrained in him as eating fruits and vegetables or washing your hands before a meal. That is all he has known. Although I live in this family with them, their perspectives and thoughts are so different from mine. Their expectations differ and their reality is now including a disease that not only took their grandmother and uncle from them, but is taking their father too. And they are both fully aware, it could possibly take them or their sibling.They are extremely close for children this age and I am sometimes just awestruck at this. Frances has been gone during the week recently and Brad asked the first week she was gone if we could pick her up early, telling me “it just isn’t as much fun when she isn’t around.” And when I picked her up and brought her home, the first thing she wanted to do was see Brad.  I think part of the reason they are so in tune to each other is their common woe of Alzheimer’s Disease and losing their father in this manner.   What must that be like? How would I feel? I know how I feel with it being my husband and possibly one day my child, but what is it really like to grow up with this horrible mess surrounding you constantly? Is it like living in a war torn country? You just get used to it and learn to adapt?

Frances remembers Jim from before he was showing signs, but her personality allows her to be very practical and compartmentalize on a regular basis. I worry one day, when she is older, she will look back and have regrets. I worry I am not doing enough for either of them now to make it easier and more bearable later. I strive to give them as normal a childhood as possible: no favors from teachers or coaches, no special treatment from schools or organizations they are applying to. There are two rules that I will not budge on: not taking advantage of Jim and not manipulating our situation to their advantage. I feel strongly that it will only hurt them in the long run if they rely on his impending death to get away with things most kids their age try or if they are treated with kid gloves.

There are moments I think way too much about all of this, and I want/need someone to talk to….my husband would be my first logical choice, but as you know, it isn’t a choice that is available. So I sit, by myself, trying to single handily determine the best way to parent two children who are not only losing their father a fraction at a time, but who might eventually sit across from a doctor listening to the same horrible diagnosis.

I am sometimes so completely stunned, I am not able to function at my normal capacity. It just can’t happen. I can’t think straight and I can’t decide what to do about anything. I can’t figure out what to fix for dinner or where some papers should go or how to plan our lives financially. The stress and the burden of trying to stay “normal” through a very, very long illness and subsequential grieving process can make a person not only change their personality, it changes priorities, desires, rationality and common sense.

My first and most important goal is to raise two, healthy, children who are not completely scarred by a childhood overshadowed by death. If I can fulfill this objective, I will have been a good mom. I won’t know until years from now. All I can do in the meantime is the best I can, when I can. And then I need to accept I won’t always be my best. I will still be me, but I will just be a lesser version for a time.

Jim, Frances and Brad, April 2013.

Jim, Frances and Brad, 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 (4)

4 Responses to “I love my kids”

  1. Kimberly Smith says:

    Karen, thank you again for sharing your story. You have helped so many people realize they are not the only one with all of these feelings you describe in your blog. Before I starting following your blog, I at times felt like a bad person for having all of these different emotions that mad me feel terrible. Then I read your blog and the responses of so many others and I knew I was not alone. When we finally got my husband’s EOAD diagnosis and we had to tell the kids, it was very hard as you know. They had so many questions and one year later my Mother was diagnosed with Frontotemporal dementia. Another hard blow for them. We’ve had so many adjustments this year, after moving Mother in with us, I knew it was going to be hard, but between the two of them, I’m suffering health wise. It’s tough taking care of someone with dementia. It’s not just the caregiver, it affects the children. It’s been harder on my boys than I realized. I know the feeling of being smothered and trapped you spoke about in your last blog. At times I feel like I’m drowning with no one in sight to help me. It’s a bad feeling that so many can identify with. Thank you again for writing and sharing. You’ve helped me more than you know. Sending hugs you way, k.

  2. Joanie says:

    I can so relate Ladies. Karen, thank you for being so brave and unselfish to share your personal journey. It’s comforting to so many and reaches far beyond your imagination to help others. My Grandma had alzheimer’s and I saw my parents struggle to care for her. Then my Mom got alzheimer’s and I saw my Dad struggle to care for her. Dad passed just before Christmas and I’ve taken over Mom’s care. I initially moved into her home because I wanted to maintain some familiarity in her life. But the isolation and removal from my life was too heavy a toll. I had planned to bring her into my home but realized her toileting and personal care issues (which i won’t go into) would be too disruptive on the family shared bathroom. I made the decision to place her in an alf. I was fortunate enough to find a home in our neighborhood that is nice, clean and has caring staff (6 ladies of varying dementias live there and there are 2-3 caregivers at all times). She can age in place and I can see her and take her out any time I want. It’s still hard and I feel a lot of guilt because I’m not taking care of her 24/7. But this arrangement has allowed me to return to work and to my home and keep everyone more sane. Medicaid, pension, social security and VA benefits cover most of the cost. We are far from rich but the alf isn’t any more costly than the costs to keep her in her home. It’s been a win win. I popped in unannounced the other day and there was a young man singing various hymns and playing guitar. It was lovely. We took Mom to the beach and enjoyed the day. I brought her back at the end of the day where she could rest and so could I. I am again her daughter and not her caregiver. Every family faces decisions right for them. Your and your children’s health and well being and ‘normalcy’ are a priority. And trust your children see your bravery every day and one day they will fully understand it. May His force be with you and give you strength and clarity in your fight.

  3. Marye Downs says:

    Karen,
    It is so amazing that you often can put to words, what my feelings are. My son who just left for college, spent all of his middle school and highschool life having gma live with us. Its been hard and of course the relationship is totally different for your kids, its their dad. At times I cannot begin to think about the impact that living with Alz has had on my son but I also realize that this is the life we have been given. We are all trying to make the best of an awful disease. In the long run I hope that my son will remember that we as a family” loved her” together with a team approach and that brought us all closer each day. My son does call from college (not as much as I would like) and always asks us how gma is doing and how we are doing while we continue to care for her . It is all bittersweet. I continue to pray for you and your family daily and I hope I get to see you at the forum again this year.

  4. I had our four adult children write in my book about how Joe’s Alzheimer’s has effected them . This is on page 204, Reflection’s of Joe and Deane’s children in my book “I’ll Be Seeing You” I thought I knew their feeling but realized I had no clue.
    Karen you have to know you are doing a good job. God is coaching you every day.

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