Looking for the Easy Life

Jim wearing his Air Force blues with Frances and Brad for Career Day at school. Nov. 2010

Jim wearing his Air Force blues with Frances and Brad for Career Day at school. Nov. 2010

Sometimes in life, nothing seems to go right: lines are long, rain comes with no umbrella in sight, a drink spilled, having to stay on hold so long you miss another important commitment, you start to fix a recipe only to realize you don’t have a key ingredient…. Little things out of synch add up to entire days that feel as if the whole world is against you. It is difficult to look at each tiny annoyance as just that; an insignificant bump in the road of life. They all seem to run together to pull you towards a negative thought process and in return, a negative outlook and eventual sour attitude.

And then something happens. Stars align in a good way and your luck changes: a parking spot opens up in the front row at Costco, you win a drawing, someone you haven’t seen in a while gives you a call or better yet they stop by for a visit, the kids laugh instead of argue at the dinner table, work flows easily, you drop your phone and it doesn’t break…. Things fall into place seemingly with no effort. It is something you could get used to, but you know better. You know it is temporary and to enjoy it while you can. There is always a shadow lurking just out of sight and you are completely aware of its presence.

That is how I feel. I am teetering on an uneven, unstable cliff. At any moment, all of the good things that happen for our family can vanish and we can tumble, freefalling into nothingness, at any second. With me at the helm. Me in charge. Me being blamed if it happens. Me knowing that I am guilty of not stopping the inevitable from happening. Even though it isn’t my fault Jim has this disease, it will be my fault if I don’t keep our family from losing everything and it will be my fault if the kids have long term psychological problems and it will rest squarely on my shoulders if something unexpected happens to Jim.

With all of this weighing so heavily on me at ALL times, it seems a wonder I haven’t had some sort of nervous breakdown. Recently, I have felt like I might. I have felt the tension in my body. I have recognized warning signs and become aware of the pulses in my mind and muscles. I am cognizant enough to understand what is happening and that changes need to take place. I have the personality that lets me believe that I am capable of anything. If I don’t already know how to do something, I can figure it out. I can learn, I can adapt, I can do whatever is necessary. But I can’t. I can’t sustain this life. I can’t work full time hours that are dictated and not flexible, follow up on paperwork and appointments needed for Jim, pay the bills, clean the house, cook the meals, grocery shop, work in the yard, do the laundry, drive to lessons and practices, check homework and sign and duly note whatever slip of paper that is sent home this week from school and, somehow, through all of this manage to look like I am doing ok. I’m not. I’m not ok. I have a husband that will tell me he has taken a shower and washed his hair when I can clearly tell he hasn’t. I have a husband that lost his wallet two months ago (again) and I have to take him (again) to get a new i.d. I have a husband who can’t figure out how to put the covers on himself at night. I have a husband that has the best attitude in the world but can’t stop himself from making comments to the kids that can be hurtful and antagonizing.

So, I was trying to figure out what I should do about work and the kids and Jim and everything when life happened. Jim has slipped just a tiny bit more, but enough that I know I need to be here with him. If I am not, someone needs to. He can perform tasks, but needs guidance and oversight. It is time for a change.

Today, I can’t explain why, but I was upset and in a bad mood. The kids were getting the brunt of my force and Frances calmly told me,” Don’t take it out on us just because you are mad at Dad.”

And it hit me. It hit me like few things have. I wasn’t mad at him. I haven’t been mad at him. All the yelling and frustrations….it isn’t anger. It was recognition and it was sadness and it was being scared and most of all, it was helplessness at witnessing this great man succumb slowly to a death sentence I can’t argue away or buy a solution to or fight hard enough for. It was seeing him lost and confused and unable to perform a simple task that he would have been able to do a few months ago. I wasn’t mad, even though it certainly seemed that way. I was utterly broken and petrified at what I was witnessing.

As I looked at Frances and Brad, I saw the questions on their faces. Why was I upset with them when they really hadn’t done anything wrong? Why was I taking my frustrations out on them? I made the decision to be open and honest and share my realization. As I told them I wasn’t mad, but very, very sad and explained why, the tears came so unexpectedly. I forced myself not to sob, but I couldn’t keep them from my eyes. They seemed to get it. By being open and honest with them, they realized they were witnessing part of my mourning and my personal grief at the loss of their father.

Jim, Frances and Brad. Tagging our Christmas tree, Oct. 2014.

Jim, Frances and Brad. Tagging our Christmas tree, Oct. 2014.

I am not working this week.  I am pursuing options for Jim. I am not sure what will happen with my job. I know I can’t afford to quit and honestly, I don’t want to. I need a job that allows me to focus on something other than my own pity party. I need something that forces me to interact with others and shower and get dressed and put a smile on my face and fake some happiness for a time. I need that. But, I need to be able to answer the phone and attend appointments and have time to organize a family of 4.

I used to feel like I was turning into a single mom. And I kept repeating in my mind, “How do these single moms do it? Why can’t I? There must be something I am missing.”

Then a friend pointed out to me, “Karen, you are not just a single mom of two kids. You also have a third child who is home all day and who isn’t growing up to take on more responsibility, but is becoming more of a responsibility, a liability and a ‘what is going to happen next?’ How many things get broken and lost and half done that you must go behind and fix, find or financially figure out? Most single moms don’t have that extra burden.”

Friends save us. Family save us. Love hurts us and ultimately saves us. Grief rips us apart and time allows us to adjust accordingly. Alzheimer’s Disease forces you to grieve over and over again, relying on those friends and family to reappear as needed to enable us to do the adjusting that will keep us from shattering and unable to be saved.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (20)

20 Responses to “Looking for the Easy Life”

  1. Kate P. says:

    Thank you again, Karen, for sharing your struggles and fears with others. I cannot imagine shouldering your burdens. I hope you can find some options this week that will help. And I hope it is some small comfort to know how many of us “out there” in cyberspace are thinking of you.

  2. Kathy says:

    Karen: I’m glad you are sharing this. I pray for your strength, peace and the best option for Jim’s care. This horrible situation is not endless, although I am sure it absolutely feels that way.

  3. Louann says:

    Even though my caretaking story is one with my mother who passed away a year ago after 14 years of Alzheimers. I can relate to so many of the emotions you share and yet I had no one to share my journey with. Thank you for your post and your honesty you really are helping others and even in reading this you help me to pinpoint things that I still struggle with in this grief of Alzheimers. I see things that you write and say and it turns a light on for me to pinpoint feelings I’m still trying to understand. You are a woman full of wisdom and you are giving it so freely. God Bless you for reaching out!

  4. Kimberly Smith says:

    Bless your heart Karen. I’m so sorry about everything. It is hard to be on a constant roller coaster ride that you can’t stop. I took my husband for his six month check up yesterday and he is worse than our last visit. He wasn’t able to do any of the tasks he asked him to do just six months ago. He can no longer write or tell time, I’m sure you’re familiar with all of this. Only to be told, hang in there, we are working on a cure. Hopefully in a couple of years we will have something. I’m thinking two years will be too late for us. As far as yourself, I know about the stress very well. I’m also a full time caregiver to my Mother, who has Frontotemporal dementia. There’s never any rest here. Between the two of them, it’s really made me physically sick from stress. It has affected my speech. I call objects by a different name, I can’t pronounce certain words and I stutter a lot. I told his neurologist about it. I told him I felt like I had caught this stuff from them, but he said they were signs of severe stress. We as caregivers have a rough road ahead of us, so please take care. We had to put my father in law in a full time memory care facility several years ago and after some research I found out that because he was a veteran he qualified for one of the veteran’s homes in our state. It only cost my mother in law $350 monthly out of pocket. It was very nice, much cleaner and the staff was amazing and much better than the nursing facility she was paying $5000.00 monthly for. Just a thought. Please take care and I hope you can find help this week. Sending hugs your way, k.

  5. Mary says:

    Karen, thank you so much for sharing. I am caring for my MIL in our home and I hear what you are saying and can relate to several of your statements. I do know that as caregivers we “have to do what we have to do”. May you continue to find the strength to do what needs to be done. We make the best decisions given the circumstances. I pray that the foundation you have started becomes a beacon of light for all of us who are dealing with this disease. There are no easy answers nor decisions.. its really hard. I will continue to pray for you and your family.

  6. Lisa says:

    I find myself getting annoyed at my husband, but I’m not really annoyed with him. I am annoyed that I have to do everything, that he cannot help me or comfort me or protect me. I am annoyed that this is now our life. I am BEYOND annoyed at this disease. Staying anywhere near positive is very hard. Take care Karen

  7. Lisa says:

    I’m a single mom of a teen, too. Also I have been caring for my almost 92 year old mom (birthday in 12 days) who has late stage Alzheimer’s for the last 9 years. I can relate to everything that you have posted, accept of course this is your husband that you are caring for, not your mom. I can’t imagine that kind of devastation. :(

  8. Lisa says:

    I just noticed that a “Lisa” posted above me. I’ll go as Lisa D. so you all know the difference from now on. :)

  9. Lisa D. says:

    In response to the “how will I do this without a job” concern… my only suggestion is to pray. My situation is that I chose to quit my job as substitute teacher and be a stay at home mom and daughter to my mother who has Alzheimer’s. This would not be possible, however if my mom wasn’t a WW II veteran and she get’s VA Aid & Attendance. Also we sold a 100 acre farm that we have been using the proceeds from to live off of for the last 6 years. The annuity that we put that money in just ran out last month… so now I’ve got to figure out how to replace $1030./ month in our income. God always provides however, and the VA check just went up by $358/month. I have managed to find a female roommate to rent our basement out to who is going through a divorce and needs a support system too… so basically $758./month has been added back in… I think we can do it on that, if we skimp. Mom is still getting her social security and I will still get child support as long as my daughter is in school. She is a senior in high school this year, and will be going to a Cosmetology school after that, so I’m not sure how that works; but we can’t afford a 4 year college at this point, and she doesn’t want to go anyway (even though she is a A student and could get scholarships). Seems it’s always something, isn’t it? Prayers for you Karen in this transition.

  10. Mariarose says:

    You children need to see your frustration, grief, and tears as well as your ability to juggle it all. HUGS

  11. Lee Ann says:

    When my exhusband was struggling through the mental illness problems, I used to call what you are experiencing as “waiting for the other shoe to drop.” Its miserable, and causes more anxiety on top of the other anxiety.

    The kids need to know why you are not mad at Dad, just upset with the situation. I again would suggest therapy, at least someone to bounce your concerns off of, help you get things in order, get some balance back because you are tumbling. You are never going to do it all perfectly. You need to do it to “enough”. Because trying to be perfect is really difficult. There’s nothing wrong with your children seeing your tears and sadness. Maybe it will help them express their feelings too.

  12. Shirley says:

    All I can say is “amen!”

  13. Joan says:

    It’s tough Karen,I hate this disease,today we took the Christmas lights out to string on the front veranda,but
    he had tied them in knots,it took an hour to untangle I just lost it and wept,it was the last straw this week.Christmas will never be the same again,but we have to keep moving forward,God bless you and your family! Some day we will be in a better place and look back on this.

  14. Leanne says:

    Karen thank you for allowing me to see I am not the only one who feels this way. I stay sad & angry & frustrated. My husband wants to know why he can’t remember, , why is it happening to him—I have no answer for him. Stay strong you ate doing an awesome job. 😐

  15. Cathy says:

    I took care of my mom for 8+ years living in our house. It was the end of life as I knew it. I almost threw in towel of a perfectly healthy 30 yr. marriage. I had an emotional affair and it was something I keep inside and will forever regret. It was an escape. Fast forward I did have a nervous breakdown. It has been a long and sad road recovering from my infidelity and other health issues. I’m begging you – it’s not where you want to be. My mom after 3 yrs. is an 90 yr old Skelton who is gone. I pray she passes. Her stroke a year ago took the rest of her mind. I am often sad but with love I have gotten better. Trust your instincts because you can end up in much worse place.

  16. Janet says:

    Karen- you nailed it again! Thank you for sharing your journey. It’s like not being alone.
    Single mom here…taking care of mom. No partner. Remember- don’t feel guilty for being human. Love is the answer, the only answer, the only constant.

  17. Andrea Spencer says:

    Oh my. I read your very sad post and then saw that many of others who commented are in even worse circumstances while caring for their loved ones. It seems that we all handle the stress of the situation differently, depending on our personalities. The one thing we all need is a lot of prayer as we go through our individual journeys with our loved ones. Please pray for my family and I will pray for yours and those who are posting here.

  18. Tamie says:

    Karen,
    Once again you hit the Alzheimer’s nail on the head. I am grateful beyond words for your frank and brutal honesty and for helping me, time and time again find justification for how I feel and how this awful disease is affecting my husband, his young sons and our lives. I seek comfort each day in the Serenity Prayer and wish the same for all the families posting here.

  19. Ann says:

    Karen – don’t really even know what to say. I have no words. Just please know that you’re in my thoughts and prayers – and those of so many others. Perfect strangers who think of you often and pray for your strength and peace. Sending love…

    Ann

  20. Karen, I am amazed by how you are coping with everything. I can’t even imagine how you manage it. I have read several of your posts and can see how what you write can help so many.

    I think your kids will be way ahead of the curve. It seems so many kids now don’t have the chance or the inclination to encounter real issues and problems. Your example and the expression of your feelings are making them better and more compassionate people. Nothing could prepare them better for adulthood in my opinion…

    My best to you and them this holiday season.

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