Please save me some….

choices

Jim eats. A lot. He usually eats enough for 2 or 3 people at a sitting. There is seldom any leftovers in our home. Which is fine by me. I am not a big leftover kind of person anyway.

But sometimes the “leftovers” are my dinner.

A couple of days ago Brad had baseball practice. Frances had a violin lesson. So, Jim took her and I took him. Before I left for baseball practice, I cooked some chicken for dinner. Then I left a note for Jim and Frances on heating up the pasta and veggies.

There would be enough for Brad and I to eat when we got home. Needless to say, when we rolled into the kitchen at 8:30, hungry and tired, there was no pasta left. Thankfully I had fixed a lot of chicken, so we had that to eat, but nothing to go with it. The vegetables were gone too. As was the orange I had peeled for Brad before we left that he didn’t eat.  I was going to teach him a lesson and make him eat it when we got home.

As I heated up some chicken and peeled another orange, tears stung my eyes.  Why? Why should I care? There was still chicken to eat….

I cried because this is another example of Jim not being able to be Jim. Of him not being able to be the father I know he is. Because I was tired after working all day. I was tired from rushing to cook dinner, rushing to ball practice, making sure I had laundry started, thinking I needed to call Verizon again for the 3rd month in a row because they were still overcharging us (which is itself enough to make me want to scream) and I still had some work to do later that night. I was physically tired and mentally exhausted. It had been a calming, nice feeling to think on the way home that I didn’t have to worry about our dinner. It was waiting for us….

Jim not being able to understand that Brad and I still needed to eat and he should leave us something was a breaking point.  Jim not being able to help with any of the tasks I had yet to do that evening was seeping into my mind and bringing out a bitterness I work hard to keep tucked far away. Sometimes those ungrateful demons start escaping.

Having time away from the moment and the situation allows me to look back and realize I need to just put things in perspective and be thankful we have food to eat. Be thankful Jim is able to take Frances to violin. Be thankful he is able to eat on his own. Expecting to be able to simply heat up a plate of food versus finding out half the plate was eaten long ago takes a moment to sink in. Sometimes I need those moments to come quickly and leave swiftly to allow me space to reflect and be grateful instead of spiteful.  But life happens in split seconds and there is no slowing down real time and there is no taking back words or feelings or thoughts of despair.

Hurt. Even though I know this disease is ravaging Jim’s mind and taking the real Jim away from me, it doesn’t stop some things from hurting. It hurts when your spouse no longer thinks you will need to eat when you get home. It hurts when the kids tell him they love him and he shows little reaction. It hurts when something wonderful happens in our life and he no longer gets excited. It hurts when he doesn’t seem to care how we are paying the bills. It hurts even more to look at him and wonder if he still gets it? Does he understand the turmoil and angst that shrouds our home at times?

It hurts to want desperately to be held and shown love and instead, to feel alone and exiled.

I am grateful for two healthy children. I am grateful for a home and food to eat. I am grateful I have a job. I am grateful for my friends and my family. I am not grateful this disease has come into our lives and given me those things that I will have to one day look back on as “blessings in disguise”. I am not grateful to become an advocate for such a horrid disease. I am not grateful that I am able but necessitated to make all the decisions in our lives. I haven’t gotten there yet. I haven’t gotten to the look back point where what I see is a piece of life to smile about and be grateful for.  Life is a hard road to travel, but someone has gotta do it. Might as well be me.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

7 Responses to “Please save me some….”

  1. Liz Brewer says:

    I know from whence you speak. I clearly remember busting my timetable to make a batch of muffins for my family-husband and three kids- and rushing out the door to my parents because I was the caregiver for my Dad with Alzheimer’s disease. Like you, I worked all day teaching school, did supper and was pleased to think that I had made a treat. Driving the 10 miles home I was looking forward to a muffin and a cup of tea. You guessed the rest of the story. They were all gone. This is between twenty five and thirty years ago now, but it is still referred to as “the muffin incident” in the family. I over reacted. Not proud of it, but I did and it was ‘normal.’ Let yourself be frustrated, otherwise it boils up inside you and comes out in more serious ways-that’s another long story. Bless you. We have become cyber friends as I walk this journey with you. Been there. It helps to talk.

  2. Gina Evans says:

    I know how hard it is! I’ve been there. I feel your pain. You are right about looking back at the “blessings in disguise”… I promise you that they are truly that! Stay strong and keep faithful … God has your back. Be happy he is eating because there will come a time you will have to almost beg him to. Hugs and prayers for you & your family <3

  3. Laura says:

    I know. You didn’t sign up for this. Keep going though. We are people who move. People who are movable. People who can. People who do. The alternative is not better. Don’t give up! …but ask for help when appropriate. Nobody said you have to DO all this alone.

  4. John King says:

    With this disease people lose their ability to think rationally. They cannot change who they are or how this disease affects them. In order to cope we as caregivers must adapt and change our expectations and how we deal with day to day situations. As frustrating as that sounds it is the only way we can get through the days.

  5. amy peterson says:

    I suspect you are trying to juggle everything and anticipate every possibility, so it really blindsides you when something like “the already eaten dinner” occurs. It IS frustrating, trying to anticipate everyone’s needs, only to stand there dumbfounded and say, “Wow! I never saw that coming!” My husband was always storming to the garage after telling me he didn’t want to be married anymore (usually 2x /wk.). I just let him “storm” and when he came back inside, he had usually forgotten that he was even upset. Then one snowy day in Feb. (in NM), he stormed to the garage, and an hour later I checked on him, only to find he was not in the garage. I went out to the barn, only to find his vehicle was missing. A sweep inside yielded his cell phone, so no way to call him. Three hours later he returned. He had stopped in a town 60 miles away to put gas in his car, but couldn’t do the sequence of credit card, zip code, etc. Some kind person had helped him, and thankfully did not take advantage of the situation by walking off w/ his wallet & credit cards. They suggested he return home, and he did so ONLY because he couldn’t figure out how to make the car heater work. When he returned he said that he was going to move back to NV, and that was where he was going. When I explained that he didn’t have his meds, or shaving kit, or clothes, or even a warm enough coat, his response was, “Oh you are just afraid of everything, and you worry too much.” Aye yi yi! If he had slid off the road in the snow, he could have frozen to death. And that was just ONE of the many situations in the middle stages of Alz. After the watering system had been winterized, he managed to reconnect the hose, turn on the water, and forget about it. The spray nozzle prevented yard flooding, but a couple of months later when things began to thaw, the ice had split the pipe, & I found our master bedroom, bath, & both walk-in closets Flooded…
    My friend, I don’t mean to minimize your pain, frustration, or loneliness. And it is OK to lose your cool, or have a mini meltdown. Alzheimer’s Disease has many victims…all related in some way or another to the person affected.
    My husband is 57 & is in the latter stages now, with his very healthy body diminishing. We’ve been walking this road for over a decade now, and you are “spot on” with the things you miss… a companion to help make decisions, plan, spend time with, a lover, a friend who knows you & can be there for you unconditionally. So you are completely entitled to feel cheated of the husband and father with whom you had planned your future together. My biggest regret is that I took so many of those “incidents” personally…. just thinking he was being stubborn or being inconsiderate. Jim is not being any of those things; it is the disease. And although he may try to justify his position, it is usually just crazy justification. There is NO logic in Alzheimers, and it took me awhile to understand that fact. My brilliant husband (a commercial airline pilot) would defend to the end his actions as a cover-up for his mistakes, and I finally learned to allow him a way to save face. Now that he no longer communicates verbally, what I would give to have him back at home, standing there giving me some lame, unbelievable excuse! Karen, hang in there. Continue to write for your own sake. I hope I haven’t overstepped my bounds, but the small stuff is really nothing to sweat….because right now, this IS the small stuff. The bigger stuff awaits.
    One question: have you joined a support group? I was very disappointed in the first few I went to because I couldn’t relate to 80 yr. olds who had their 80 yr. old spousal issues. They were much different from what I was dealing with…w/ a 50-something husband…the issues are so different. I finally found a support group that is specifically for caregivers of early-age-onset Alz. loved ones. It has been a remarkable catharsis for me to realize other people had similar experiences and very similar reactions, so I was not the horrible ogre-wife when I lost my temper or melted into tears.
    Karen, you are a strong person to be able to put your feelings out there and share with those of us who are in the same situation. Sounds to me like you are a very loving, caring wife & mother, and MOST of all, you are human! Sending you love and light!

  6. Marsha Carpenter says:

    My husband & I are in our 5th year of this disease. He not only suffer from Alzheimer’s but is an insulin diabetic. As he advanced he could not remember eating breakfast or lunch. The doctor said his brain no longer told him he was “full”. He would say “I’m going to tell on you that you don’t feed me” & I would have to say – “okay, I did but you may tell anyone” & hide the fact that I was heartbroken. At ten at night after a full dinner at 7 he would say “well time to eat!”. At first I showed him dirty pans, plates, paper goods but soon realized he didn’t believe. He would beg me for more food and I felt like a witch when his sugar was out of control & I could give him no more. Soon we came to hiding food in cupboards and a lock in the refrigerator. As sundowners progressed I would wake up at night & find him opening packages of instant oatmeal & trying to eat it, partly dressed in my clothes and his. I cannot remember the last hug, the last kiss, the last compassion. What we must always remember is that it is the disease, not what we do or don’t do, as hard as that is to bear. He is now in a nursing home & I go nearly every day for hours at a time where he sleeps, eats and simply exists. Most of the time he knows me, his children are lost to him as are his grandchildren. Pictures from the past with his speech therapist are as if he is looking at the life of others rather than us. What you will realize in time that right now is the “good time” – that your writings will be what carries you through – that you are helping so many people by doing this. We all share the same path in many ways & it is so good to know we are not alone, because truly you are not. It’s okay to be upset, it is okay to cry, it is okay to be frustrated. When I cared for my parents as they died from cancer I thought I had faced the worst. Then my daughter became ill with a rare disease that was incurable & I watched her suffer like a saint for ten years. Now she is gone. Now my husband is a shell of what he once was…but he is here, he is my task as Jim is yours and you will come through this with the help of family and those who post here. Hope is what we have. It may be all that we have – but we will cling to that. Peace!

  7. Maureen says:

    Hi Karen,
    Thank you so much for sharing. I have been blessed to recently find your blog! My hubby is Jerry my fairy tale prince. We married nine years ago and our wedding cake said fairy tales do come true. 4 years later my stepson died. 6 months after that my husband was laid off from his job as Vice President of a global firm where he worked 32 years. The following year when he finally agreed to go to the doctor because i knew something was not right I experienced the unforgettable clock test he took. That was in 2009. I thank God for my hubby every day that I have him. On a daily basis I turn my life over to my higher power. I am the best person I can be everyday and that’s all I can be. I try to think about what I have and not what I don’t. And I try to remember that my most amazing husband’s golden years have been stolen away from him by this disease. All I can do is love him with all my heart and do my best! Thank you for being here for me. I hope I can do the same for you! xoxoxo

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