My husband injured his back about 8 weeks ago. We did the usual, finally seeking out Physical Therapy and he is still not better. Tomorrow we go for an MRI. Having said all that , one thing that strikes fear deep in my heart is how far his cognitive function has fallen since he hurt himself. My hope is that the pain is causing his mental issues and not a sudden worsening of his Alzheimer’s. I have put school on hold until we get some answers…and if his cognitive function does not come back to his baseline, I may not be getting a job at all.
I am struggling with all this. The sudden shift to full time caregiver, helping someone dress, sit up in bed, get to the bathroom and so many other things. I was prepared for this to happen gradually, but if it si our new normal, I need to figure out how to navigate it all. I am just not ready…not ready

I read all the time about how as our loved ones deal with Alzheimer’s we should celebrate what they can still do rather than look at what they can no longer do.  I admit I am having a hard time with that. It has been over 6 months since Dan received his diagnosis of Younger Onset Alzheimer’s.  He no longer works or drives. He keeps our vegetable garden healthy and cuts the grass out back.  He does housework when asked to, and can be found at any given time on the computer emailing friends.

Yet he is having trouble remembering simple things, following directions without asking me multiple times what I said, saying certain words.  They sound okay to him, but I know they are coming out wrong.  I get frustrated so easily with him now.  I am so disappointed with myself for feeling this way and I am working hard to correct my thoughts and attitudes.

I must sound like a nag when I daily ask Dan to do his brain games on the computer, or to play his guitar like the neurologist suggested.  I don’t see the serious commitment to fight this disease progression.  I know what the outcome will be, but I want Dan to be as good as he can be for as long as he can be.

I should be moving on by now with my grieving over his diagnosis.  I am just trying so hard to keep my head above water with all that has been put on my plate. I am trying so hard to be there for our girls while they deal with their father’s illness.  I am also now back in school so I can widen my skill set and get a job that will supplement Dan’s Social Security.

I find myself wanting to hide.  Sit in our bedroom with my school books open around me with my classic rock playing so that maybe, just maybe I can close my eyes and with the smell of papers and textbooks in my nose, I can be 17 again.  Full of hope and promise for my adult life to come.  I can hide in that tiny space in my mind where I am just a carefree teen with everything to look forward to.  It just doesn’t take long for reality to hit…

I am trying to find my previously almost unlimited patience. I was always so laid back when raising our daughters.  Especially during their teen years!  Really!  Maybe I used it all up back then.  Whatever it is, I need to find it and put it into my daily life here with Dan.  We are too new to this long road of Alzheimer’s for me to flame out now.  I am trying, I am really trying.

Since Dan received his diagnosis in early March, I have begun the laborious process of trying to get our mortgage modified through CHASE.  It has been a test of sheer patience, stamina and faith.  All of which are faltering now.

I know that we are two of many out there who need help and are applying for it.  I know that it is incumbent upon me to be diligent in getting paperwork out to them.  I feel as though even after doing what was asked, we are being stonewalled by a company that posted record profits last year.  If we can’t get this mortgage modified, we will not be able to stay in our home.  How hard will it be to move a family of three with three animals to an apartment, when the husband can’t work and the wife is currently home caring for him?  I am not sure we are the picture of the tenants anyone would want after looking at us on paper.

I am horrified by the help I have had to pursue in the past two plus years since Dan lost his full time job.  They say” pride goeth before a fall”, and boy did I fall hard!  I learned a lot about myself in the process and hopefully it has made me a more compassionate person.

 I had to apply at one time for Food Stamps.  We had them for three months, and it taught me to not judge others who I have seen using them in the past.  No one knows what they are going through.  My youngest daughter applied for and received Medicaid, although Dan and I do not qualify due to the disability insurance amount.  I have learned to navigate the prescription maze in trying to get our medicines at a reasonable cost without insurance.  I have also put off going to the doctor on matters that normally would have sent me to the office to be seen.

  I have accepted financial help from family and friends as graciously as I can, and it has taught me that I can’t always be the one to help people, sometimes I need the help.

  I suppose this is all in preparation for what lies ahead with Dan’s illness.  I will continue to accept what I need to keep my family in our home and safe. I am just feeling disheartened by a system with our mortgager that has been so difficult to complete with rules that are constantly changing.  I am tired of the stress and it has kept me from doing other things in my life that I need to focus on.

  Dan has been great, by the way through all of this.  Very steady, helpful and willing to let me vent when I need to.  I am grateful for him every day.  Even with this disease looming above us, we make a great team.  I wouldn’t trade my life with him for anything.

Money

Money (Photo credit: 401(K) 2013)

In the 4 months since Dan’s diagnosis, I have begun the process of trying to get our mortgage modified.  It is long, laborious and extremely frustrating.  Dealing with people who have no vested interest in my life and who can’t begin to give me answers, only ask more questions, ask for more documents and tell me to wait patiently for a decision. I have also begun the task of looking for ways to lower our monthly expenses…at least until I can find some employment!  We have cut back on some services, dropped a cell phone plan that was overpriced and I shopped around for a better price/cell phone plan.  I am not so good at all this yet for if I had done my due diligence, we would not be in this mess.  Let me explain…it seems as if I have gone from the proverbial frying pan into the fire.  Our cell phone plan is costing us more than our previous carrier and after doing some investigating online, I find that this company has all sorts of complaints about them, their customer service and overcharges.  While trying to save my family money at a very critical time, I have instead cost us more!

Dan always did his homework, and he never fell for blithe commercials offering what could not possibly be.  But here I am in his seat, not doing a very good job at this and wondering how the hell I got here. It has probably been two years since I asked my husband to work on bills, check cell phone plans or look at insurance. I never realized in that time that Dan would get to a point where he can no longer understand the math or the  concepts of comparing plans for services.

I can’t go back, I can only go forward. I am just overwhelmed at all I have to do some days and we aren’t even in to the more serious stages of this disease. If I am having trouble managing the bills and the house, what will I do when Dan needs 24/7 attention and support?  Where can I find the inner strength now for the small stuff that shouldn’t throw a grown woman into a tizzy?

I am forever amazed at the memories that a scent can bring to mind.  I was driving to see my mom in the nursing home yesterday with the windows down and the 70’s music playing, when I smelled newly cut grass.  I was immediately transported to that time in life when I was small, played outside all day in the summer and had the grass underneath me and the white fluffy clouds overhead. I inhaled deeply, but being on a highway, the scent flew past quickly and I tried to hang on to the memory as long as I could.  I will look forward to the scent of honeysuckle on a warm summer night that will bring back the memory of being a teenager with a license to drive and an old Dodge Dart as my ride.  Windows down, car radio blaring with the music of the time (1970’s rock) and no worries.  School is out for the summer, I am 17 and more worried about saving money for vacation than anything else!

Those times are long gone…the memories are tucked away and only come out when a scent signals my brain to access that memory.  I have read that scent is a great tool to use for the Alzheimer patient.  I hope so, as my husband progresses through this disease, I want him to have access to pleasant childhood/teenage memories that will bring him joy too.

Music elicits that same response for me as scent.  I heard a song last night on a CD we had made years ago.  There was a song on there that Dan and I considered our song.  It was an obscure tune, a one hit wonder for a band in the early 1980’s called Sneaker.  The song is More Than Just the Two of Us.  It is funny how listening to it last night made me cry.  I could hear it and feel warmth and the newness of our love.  Hearing it last night just made me sad.  I teared up thinking about what we will miss as we go forward through the Alzheimer’s.  But then I looked over at my husband, and his face was peaceful.  No sign of tears, just a small smile on his lips.  He was lost in pleasant memories of our earlier life as newlyweds.  He had no fear, no projection of where he will be in the future with his disease.  It made me stop and dry my eyes and just enjoy the song for a brief 2+ minutes.  I continue to look to Dan at this early stage of Alzheimer’s for how to handle things.  He has been afforded grace from his faith, and it colors everything he does in this phase of his life.  He is happy.  I need to find that as well, so I can once again enjoy scents and songs and not find sadness in them for what is past, but joy in what I had and have in my life.

English: Histopathogic image of senile plaques...

English: Histopathogic image of senile plaques seen in the cerebral cortex in a patient with Alzheimer disease of presenile onset. Silver impregnation. The same case as shown in a file “Alzheimer_dementia_(1)_presenile_onset.jpg”. (Photo credit: Wikipedia)

Sunday we had a family meeting at my sister in law’s house.  It was my husband and his two sisters, their husbands and my father in law.  I had an agenda and a list of resources to hand out.  I was loaded for bear so to speak.  I have done my homework.  I’ve read as much about Alzheimer’s as I can get my hands on. I have joined web groups and met folks taking care of loved ones with this disease.  I myself have been a paid caregiver for clients with dementia.  What this illness cannot teach you is how to handle family…especially in laws.

I can say with all honesty that I was pleasantly surprised with how the meeting went.  Dan sat there for the most part very quietly, giving his input when asked.  My sisters in law were wonderful with their offers of help as we go forward.  My brothers in law were helpful as well with just the right amount of humor thrown in.  I believe that I was most amazed by how graciously Dan has accepted his diagnosis, even with the talk  of the different stages of Alzheimer’s and our concerns about some of the behaviors that go along with it. He has complete faith in my ability to handle what is coming.  I am taking cues from him and trying to stay in the here and now.

Life will show us lessons and if we are awake, we will learn from them and file the knowledge away for later.  Everything in my life, I believe has led me to this point.  My years as a paid caregiver, my continued training in this field, my growing up years in a family of alcoholics…all of it has led me to this day, this time, this path that is before me.  I am a caregiver by nature.  And I chose to be here.

In thinking about what a dementing illness does to an individual, I have to believe that as the disease progresses the person slowly loses themselves…as if being wiped away.

What makes us who we are? If we are the sum of our parts (of our brain), then when the brain succumbs to the illness… what of us is left?

When I was a little girl growing up in the 1960’s, I used to settle on to the couch with my family on Sunday nights and watch the Ed Sullivan Show..  Through the years I saw many, many acts that surprised me or made me smile or even swoon like when the Beatles appeared on the show…but I remember one act that would show up regularly.  It was a plate spinner.  A tall dowel rod with a china plate spinning on it.  The trick was to get all of them spinning at the same time and keep them spinning without letting one of them fall.

My life has become like the plate spinner’s, and each area of my life is a plate that is currently spinning if a little wobbly.  I can’t manage to let any of the plates fall.  Even the ones that truly have not much importance.  I run from plate to plate trying desperately to keep them going, and to not let them fall ( and let anyone down).  I know now that Dan’s diagnosis is entering it’s 2nd month, I need to prioritize and let the plates fall where they may.  Dan has had no problem letting his plates fall to the ground and shatter.  Plates like his Career, and his Independence, Ability to Drive.  He has let them go and seems to be okay with it.

I want to be okay too.  I know going on  this journey with Dan, it’s important for me to let some of my plates go.  Which ones?  Do I let them fall and shatter or do I take them down off the rods and pack them away for later?  I am trying to take some cues from my husband.  But what he is doing seemingly with ease, I am struggling with.

For all the years the plate spinner was on the Ed Sullivan Show, I only saw him drop a plate or two…I don’t know if it will be the same for me.Plate Spinning

what is Alzheimer’s and what is just my husband being himself?

Maybe it’s just a hyper sense of awareness, but I often wonder throughout the day whether my husband’s quirks are related to his Alzheimer’s….just some little things I notice.  Probably stuff my family or our friends would not pick up on.  So maybe it’s me?

My Story, How Do You Let Go of Your Dad?

My youngest daughter, Melissa has a gift for making videos.  Self taught as most tech savy kids are these days.  I should have realized that her way of reacting to the news of her father’s Alzheimer’s diagnosis would be to make a video.  She is carrying around a lot of anger.  Not good for a young woman who has dealt with a major depressive disorder since 2006.  I have encouraged her to talk about how she is feeling.  She is the only child left at home…not fun when you are watching your middle aged parents go through a permanently life altering event.

So Missy has made a video about how she feels about her father’s illness.  I am going to share the link here.  It is not for the faint of heart.  But the rawness of the emotion is what made me stay in my seat and finish it.  It’s about 8 minutes long.

It is my deepest hope that she can come to me and talk about these feelings, and also share them with her older sisters as well.  I have wide shoulders.  I have much more life experience, including losing my dad at 24.  I have a larger skill set.  I just don’t want her to not talk to me because she is worried about me.  I need her to be okay.

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