When will we be NORMAL?

Brad helping with dinner tonight since I didn't get home from work until very late.

Brad helping with dinner tonight since I didn’t get home from work until very late.

Frances has mentioned several times (remember, she is 13) that she just wants to be “normal”. Yeah. So do I.

I don’t want to be consumed by Alzheimer’s Disease 24/7. I really don’t want to be constantly asking for and accepting help from so many. I don’t want to watch my husband, my soul mate, the one person who actually wants to put up with my shit turn into a shell of the man he once was. Sometimes I watch him and I feel so sorry for him. He has the outward demeanor at times of an 85 year old but without all the fun of having lived those productive and memorable years.

Watching him in the hospital last week was horrible. Just horrible. I know there are millions of people who have witnessed such pain and have felt such sorrow, but when you are there, in the moment, living and breathing the confusion and the depravity of this illness, it becomes REAL. Real beyond “knowing” what is coming. It was here. I was smack dab in the middle of a storm and I was not prepared or ready. I am not sure I will ever be ready.

Jim has bounced back to the point of being about at his baseline. Modern medicine really is amazing. To see him two weeks ago not even able to stay awake for longer than 5 minutes or to know where he was or who we were and now being able to stay home alone again is incredible. The biggest issue so far has been the disappearing dog food bowl that was found 24 hours later in the cat food bucket. But this snippet of what is to come made me realize that there really is no preparing for this.

It has been a rough ride all the way around. Rough on the kids. Rough on our friends. Rough on our family. Rough on me. Rough on Jim (I am going out on a limb here because he really doesn’t seem affected at this point.) I am aware enough to know that this same type of thing could happen over and over. I worry how it will affect the kids. How will it affect the desire of friends to drop everything to rescue us? How will it affect me? I can tell sometimes that I am immune to the situation and show little emotion at times that I should.

During all of this, I have realized how completely broken many aspects of our healthcare system are. You read articles about this, but when you are told that because your mentally impaired husband doesn’t have a physical ailment, he cannot qualify for home health aid or Medicare won’t continue to cover rehab and you can’t find any programs for someone his age (52) because he is too young. Well, I wish someone would tell his Younger Onset Alzheimer’s Disease that he is too young to have it. Wouldn’t that be nice?

So let me paint a picture for you: my husband has a mental disease that is not going to get better. We have two children, ages 10 and 13. I work full time. We are middle class. (which means we do not qualify for programs that are based on income) He is retired military and for those of you in the know…I have started the process of trying to qualify for Aid and Attendance (OMG, the paperwork, the waiting, the formula to try to figure out if we will qualify) It seems that each day I find out something else to worry about and then I must make a conscious decision on whether or not it is something I have control over and therefore something I can try to mentally and emotionally ignore. Jim is for all intents and purposes no longer a participating “Dad”. Before you get all upset about that statement, think about what a Dad does in the sense of the word and think about if someone in the early stages of dementia can do those things. Oh, and walk a mile in my shoes. Then you can say something. So, I am responsible for 3 other people besides myself. Plus the bills. Plus trying to keep up with laundry, housework, yardwork and meals. Plus my job. Plus the kids schedules and schoolwork (yes, I forgot to sign an agenda last night). Plus the myriad of things that any “normal” family faces each day. I have people tell me all the time they don’t know how I do it. I have come to realize that whatever we are each faced with at any given time is what we can do. For some, it is dealing with an ex that is dragging them through the courts again. For a few, it is figuring out which contractor to use for their new addition. For others, it is dealing with a teacher that seems to be treating their child unfairly. Whatever is causing stress, that is your thing at that point in your life. This doesn’t mean it will always be the only problem you have. We all have our own difficulties to endure. Thankfully, they come in a variety of sizes and at different times, which allows us to shelter our friends when their burdens are much worse than ours. Right now, my burden is making an impact unlike many deal with. But I can weather through with the help I receive. Someday, I hope, I will be on the other side and I will be offering shelter to a friend who will be needing refuge. In the meantime, I am struggling to find my way through all that seems to be coming at me at once. My priorities are changing. My focus has already changed. My determination and grit are still just as strong as before. Only now I don’t have my partner to help me. I do have unbelievable parents. I am surrounded by wonderful friends.  I have two children who amaze me. They are not perfect by any stretch of the imagination, but my goodness, they sometimes step up in ways I never would have when I was their age. And it makes me humble and it makes me proud.

Yes, I want to be “normal” too. Whatever that is. A simple life with my biggest worry being what I am fixing for dinner or what we are doing that weekend.

Frances walked in the rain tonight while I was at work to get me a delicious cupcake. She bought it with her own money and decorated the box for me.

Frances walked in the rain tonight while I was at work to get me a delicious cupcake. She bought it with her own money and decorated the box for me.

 

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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 “When will we be NORMAL?”

  1. Amy says:

    It breaks my heart to read your blog, but I continue to do so because eventually I may have some helpful info to share with you. My husband passed away May 1st, after an 11-12 yr. battle with early age onset Alz. He had just turned 58 2wks before he died. I have learned that “normal” has a completely different meaning thru the different stages, and sometimes it changes on a daily basis. As part of my grief counseling, we talk about finding a new normal. As for adult daycare, my husband lasted 2 days. But he had no problem “supervising” someone who came in to clean house, do laundry, etc. I know the VA is an option to consider…I would continue to pursue…the squeaky wheel…well, you know. Also…Have you checked into Social Security Disability? My husband qualified first time we applied, and it was based on his salary as a pilot when he was paying in to SS. He qualified on the basis that he could no longer do his job flying, & he could not even hold a menial job because he couldn’t make change or even follow a 2 part direction. The ss $ covered about 60% of his group home fees. But the added benefit was that at 50, he qualified for Medicare. Blessings to you- from one Alz. Wife to another- You are NOT alone. It was hard for me to even accept help in the beginning, let alone ASK for help. But I was amazed at the help and resources available. You will be amazed too! Main consideration is to preserve your health, & your children are learning an invaluable lesson in caring & kindness.

  2. Sandy says:

    I know, I so miss “normal!!” And yes all our friends were amazed we had to pay out of pocket for everything!!!!!! Curt has medicare now, but still does not qualify for services since he physically fine!

  3. Kimberly Smith says:

    Karen, I’m so glad Jim is is home. I can’t imagine the stress you face still having to work, with everything you have going on at home. It’s especially hard on the kids. I’ve seen that first hand with my boys. But, they step up and help without me saying a word. My Mother has been living with us almost two months and she has adjusted fairly well. She has Frontotemporal dementia and John has Early Onset Alzheimer’s. I wonder sometimes how I’m ever going to survive this. All caregivers wonder this I’m sure. Sending hugs your way. k.

  4. Debra says:

    All of you amaze me. My mom had Early Onset. Her brother and aunt got it later in life. I wonder every day if something I’m forgetting today is a sign that I have it. I pray for all of you and our children everyday. I’ll keep reading your posts and living my live trying to push the possibility that I will put my family through this to the back of my mind. At least at sixty my kids are grown. Tell me what I can do to help.

  5. Andrea says:

    Aww..the cupcake from your daughter and your son making dinner is so sweet. You and Jim are raising two wonderful children. We are all doing the best we can one day at a time. Your point about services lacking for Early Onset is so true. I wish the Alzheimers Association would put out a commercial about Early Onset to help educate the public. I had made a point to tell our new neighbor that my husband has Early Onset Alzheimers and she mentioned that she worked in a nursing home several years ago and never saw anyone who was not elderly with Alzheimers. She even asked me it is just like regular Alzheimers. They probably think I am making it up, since they see him mowing the lawn (he is still able to, with many spots missed), but what they don’t know is he doesn’t know the answer to 2+2 and can’t speak a complete sentence. I almost think it would be simpler to tell people he has an inoperable brain tumor. Then they would be more understanding of his symptoms! My continued prayers are with you and your family.

  6. joan says:

    well said Andrea ,2 sweet kids for sure! I’m sure jim knows his loved by his family.I’ve been off with my husband who can’t be alone anymore,I need to hire someone before I go back to work,it’s so life changing I can’t bring myself to make the call to have his needs assessed,let alone pay out half our income! Oh boy hard disease all around,keep calm and carry on!

  7. Leanne says:

    Karen I know it’s so hard for you & the kids but how lucky you are to have them & their future to look forward to. I feel like I’m just waiting around for one of us to die.You have friends sticking by you which is awesome part of our family even disappeared. And mostly you are blessed your husband still loves & appreciates you. I’m not making light of what you are going through it sucks & is totally unfair.Thank you so much for posts it helps to know someone understands. My husband also has early onset and at 56 doesn’t meet the age limits. I feel like I lost my future all hopes & dreams gone.

  8. Ann says:

    (((( Karen )))) – Your sweet daughter has learned well by watching you. She understands caring, compassion, and unconditional love more than most her age. And quite simply, that’s due to the example you set daily. You all remain in my thoughts and prayers…

  9. Joe was diagnosed at 75. He will begin year 12 in Nov. Yesterday was not a good visit. Joe was lucid enough to ask, What did I do …..?, he mentioned killing twice, he kept repeating, I can’t do it, and his anxiety was at full speed. I sat with him, rocked him in a recliner, sang lullaby’s, rubbed his back and through it all he was wanting to get up and do something. Joe isn’t walking much. He is not steady on his feet. Joe keeps his eyes closed but senses I am some one close to him. What is next, no eating or drinking, daily sun downing, and how long will this last?
    Isn’t is amazing how much our love grows in this difficult time? If I was ask the question are you ready to say good bye my answer would be yes and no. Yesterday I thanked God that I can still sit by Joe, get a kiss and hearing him say “I love you to pieces” Yesterday he ask me would I visit him tomorrow? Yes, hoping today he won’t be lucid.
    Dear Karen and all you wives who are shouldering this disease keep the faith and know I understand and God is always with us.

  10. Jeri says:

    I know what you’re saying and feeling when you want “normal” back…….we all do. Each new day comes with new challenges that we can sometimes handle alone and other times we need help. I thank God for that help. I’m dealing with things that I would never have imagined I could handle, but here I am doing it. Dont get me wrong – it isn’t easy. But I’m finding I can deal with much more than I ever thought I could. I’m also learning to accept the help that I turned down before. I was determined to shoulder the responsibility. Well guess what…..stubborn me finally admitted I need help. An Alzheimers diagnosis meant sooo much more than I was aware of. Now my husband has been diagnosed with PCA or Bensons Syndrome too. Have any of you heard of this? It’s a very rare atypical variant of Alzheimers that affects the vision. And it brings on many more additional challenges to deal with. I had read about it online and Dwight was having the symptoms so when we went to the neurologist I told him about some issues, and sure enough he has that in addition to Alzheimers. WHEWWW! Overwhelming to say the least.

  11. Wow. I feel too young to be dealing with dementia (33 for the last four years now), but 10 and 13 – that’s humbling. Really feel for you and yours after reading this…

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