Now What?

April 18, 2013. I will never forget the day…ever. I had just returned from a visit from the west coast to see my son, his wife, and our two beautiful grandchildren. I flew in on Wednesday and he got the news on Thursday. His boss met him in the driveway and told him to go home. After 17 years of faithful service, everything changed with just two words: Go Home.

We have been through a lot, he and I. We were High School Sweethearts. We are best friends and soul mates. We’ve been married for 27 years. We’ve survived accidents, deaths, the loss of a business, illnesses, changes in jobs, rebellious children, moving, addictions, and even a midlife crisis, but nothing could prepare us for this.

Now what? He did all the right things. He updated his resume with some help from our daughter. He attended the meetings, he went door to door, he made phone calls, he applied on-line. They say there are an abundance of jobs out there. They are wrong. Jobs that he was offered wouldn’t pay for the fuel to get to work. We limped through each day for 7 months. We were forced to borrow money from family and accept any amount of charity people felt led to provide. It was both humbling and humiliating, but a huge blessing and we needed it.

7 months to the day, he began a new job in a very similar position to the one he lost. We were encouraged. We felt that we had made it through the “valley of the shadow of death” and were so grateful to be on the other side. Although we had a lot of financial catching up to do, we were beginning to feel like we were getting our feet under us again. He started out strong, seemed to picking up on things quickly, and then the work load increased. Spring is a busy time in his line of work and he just couldn’t keep up. He complained that he couldn’t remember things and had to repeatedly ask for help from coworkers. He would go out back to fetch something and forget why he was there, even with a slip in his hand. Numbers that he could rattle off in his head without looking didn’t come to him any more. He felt like he was caught in a cyclone and couldn’t make his way out. He became scared. The more he forgot, the more anxious he became, and the more anxious he became, the more terrified he became. It was a vicious circle.

April 18, 2014 my sweet baby, the one I would give my life for in a heartbeat, heard those words again. They were spoken in a kinder manner and with sensitivity, but the message was clear: Go Home. It was a long ride home…

Now what? We started with a doctor’s visit, which led to an MRI, which led to a phone call. When you are asked to come right in, it is never a good sign, but we had to know. We were told that according to the pictures, it appeared that he has Dementia. Isn’t that what old people get? We are 48 years old! Was that a tear in our doctor’s eye?

From there, we went to a Neurological Appointment at our local Mental Health Hospital. Isn’t that where severe mental health patients go? They looked through my purse in the entry to be sure that I didn’t have sharp objects. After a 2 hour evaluation that was inconclusive, we were sent to another facility for a 4 hour Neurological Evaluation. It was then, that we were told that he had some pretty serious cognitive deficiencies. The report wasn’t as bad as we feared, and it told us what we already knew. With this new information, we went back to the specialist. Then we heard it loud and clear: Mild to Moderate Dementia most likely caused by Traumatic Head Injury. He has had too many blows to the head and the one in February, when he hit his head on the the snowplow, most likely was the straw that broke the camel’s back.

The next day we went to my uncle’s 50th wedding anniversary and put on “the face”. We vowed that we weren’t going to say a word, but my uncle asked the dreaded question: “How’s work?” I held my breath. He answered. I thought I was going to pass out. There is was. Out loud for all the world to hear. “Oh, God!” I could hear the scream in my head but I did not cry. I could not cry. He was looking at me and I had to be strong. I am his rock and I need to be strong. But I didn’t feel strong. I still don’t.

A couple days later, my cousin called. She referred me to a friend who is also going through a similar experience, and runs a support group. I actually met her at the anniversary party. It was so fresh, my head was in a swirl, I couldn’t think about a support group. The friend wrote to me and shared her story and it helped. We wrote back and forth, then she agreed to meet. She gave us more than any doctor had given us so far. She was blunt and she answered the hard questions that we just needed to know. Then I went to my first support group meeting just 3 weeks after hearing those terrifying words.

I cried a lot. They cried with me. They gave me a “To-Do” list. I needed a list. I needed to do something. Never have I felt so helpless. I clung to the list. I had 25 things that needed to be done sooner than later. I contacted the Social Security Department and Disability…again. He had started this process in May of 2013 after the loss of his first job. He has a lot of medical complications and lives with chronic pain so I started applying for assistance. We were denied twice, so that was why he returned to work the second time. Then he lost his second job. To date, we are still waiting for a Hearing date and it has been 18 months. 13 of those months, we have survived on just one income with a small amount of supplements from odd jobs at the farm. That has been the hardest part- worse than the diagnosis. We lost half our income on that day and half of my income pays the mortgage. It doesn’t take a rocket scientist to figure out what that means. We don’t qualify for assistance. I make too much money on my teacher’s salary. So for two years we haven’t eaten out, seen a movie, bought clothing, purchased gifts for birthdays and holidays, taken a trip, and we rarely get groceries. We eat what people give us. That part really stinks.

Besides the financial burden, we have the legal burden. In order to prepare him for Medicaid and possible Residential Care in the future, he can’t have more than $10,000 worth of assets in his name. As a result, we had to meet with Eldercare Lawyers. As the waiting room played music from the 50’s, we were reminded that this is out of the ordinary. I was told that I needed to change my beneficiary on all my documents so that the Government won’t take my retirement for his future care. With that information, we created a Trust. In the case of my death, my retirement and Life Insurance policies go into the protected Trust so that his needs are taken care of. We had to create documents for Financial & Legal Power of Attorney in case I am not able to care for his needs. Then we had to take him off the Deed. That hit us like a ton of bricks. I had a major melt down. I cried for 8 straight hours. Once I started, there was no stopping. I couldn’t hide it. He watched. Two days later, he crashed.  It just plain stinks. The good news is that the lawyers are allowing me to make payments on time after just one more visit. I had to redo my Will. My agents had to be family members not my soul mate, which put another pit in my stomach.

In just 2 months, we will return to the doctor for a 6 month reevaluation to see if there has been regression. In some ways, I feel like he is doing better. It is helpful to have him out of the busy workplace. He makes his own hours, helping with the lawns and weeding for the family. He is still able to drive short distances that are familiar. He putters at home, and is very helpful with the household chores. Most of the time, he is content. He presents himself very “normal”. If people weren’t aware of the circumstance, they wouldn’t know about his diagnosis. His deficiencies are subtle. Sometimes he asks the same questions over and over. He struggles to hold on to directions. He forgets conversations quickly. Crowds terrify him. 70 miles an hour on the interstate is way too fast and traffic cones nearly put him over the edge. He has forgotten how to tie his shoes most days. He stutters, stares, and moves his knee up and down like crazy when overtired or overstimulated. More than anything, he is lonely, and that is what makes me most sad. He has very limited contact with people. He misses his coworkers, his church family, and most especially his family members. This diagnosis is very isolating because it is too frightening to be in crowds and when you are in the remote country, you don’t see anyone unless you go out.

Now what? Our children are grown and have moved away to begin their own lives and that is alright. We started our family at a young age and were so looking forward to this next chapter. We were looking forward to travel, new hobbies, and reconnecting with one another. We moved to a new home that we absolutely love, for privacy and peace. Honestly, I can’t think about the future. It makes me sad. Instead, I have decided to plan for the future and live for the day. For my sanity, I read self help books. I read Max Lucado’s book: IT’S NOT ABOUT ME twice, and am now reading WHEN GOD WHISPERS YOUR NAME. My mom found me another book that is helping, by Holley Gerth called YOU’RE GOING TO BE OKAY and that is giving me some good tidbits to mull during my ride in to and from work. I still attend the support group which is specifically designed for those caregivers who have young loved ones diagnosed with Dementia. I have continued to work on the list. For some reason, the list helps. I don’t know what I will do when everything is crossed off it. I have found a network of friends and family to support me and that has helped a great deal. I read my bible, listen to Christian talk radio, and uplifting Christian music and fill my head with hope. At bed time, I make sure to thank God for the blessings, no matter how small. I am determined not to waste one single moment feeling cheated and angry. The good news is that nothing is going to happen over night. It will be slow and we will go through this together. There will be a day when he doesn’t know what he doesn’t know and that will be easier for him but very hard for the kids and I. I dread the day when he doesn’t recognize us. For Christmas we have asked for memory books and games that will keep his mind working and we are looking forward to a gathering in February with our children and grandchildren. We need to make memories for us, even if he forgets.

People want to help but they don’t know how. I suspect that they don’t know what to say, so they stay away or don’t say anything. They have their own lives and are busy. I get it. But one thing that I have learned through this, is to ask people how they are doing and really mean it. Stop, and look them in the eye until they really answer. I also want to be a doer. I want to help. When we get our feet under us, I am going to have a fist full of fuel and grocery cards that I give to those who are in need. Those have been our best gifts. Not that it is just about money, but it helps. I am also going to visit. I want to be the keeper of the K-Cups. BYOC (Bring your own coffee) to the old, the sick, the needy, and the lonely. My sweet baby always says that everyone has a story and he is right, and I want to hear yours. May I help others to have hope and courage to keep on, keeping on.

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5 Comments

  1. My grandmother has advanced dementia and I was her sole caregiver for several, difficult years. During a particularly difficult week with Nana, my horses decided to find a flaw in our fence and go out adventuring. It was a cold, wet, and miserable that day and I had already spent hours fixing fence when I realized I was just shy of having the materials I needed to finish the job. It was a small set-back, but enough that day to have me sitting in the mud crying with anger and frustration. I got myself together and went up to your husbands old work and found what I needed and he asked me how I was. As usual, I cracked a joke (it was how I handled the bad times with Nana) about my horses plotting against me, he asked about my grandmother and we chatted a minute . I got out my money and he pushed the bag across the counter and said it was on the house; it was only a couple of dollars, and I thanked him and left. I got into my truck and cried most of the way home. It was the kindness in his eyes that tipped me over. Nana had been so hateful to me that week that I thought I might have a break down, but that simple act of kindness gave me what I needed that day to get through. When you say to really look someone in the eye and ask how they are, you are right, and that is exactly what your husband did that day for me. If there is ever anything that I can do to help or support either of you, just tell me. I would appreciate the opportunity to return his kindness during this difficult time for your family, Your will all be in my prayers!

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    • Oh my word that is just what I needed to hear today. I will be sure to share this story with him. Please feel free to follow his blogs at: rustyhiggins2014.wordpress.com. He is finding that blogging is just what the doctor ordered these days and you may really enjoy his thoughts. Thank you again for the wonderful story. He is a great guy with a big heart, and you hit the nail right on the head.

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  2. Hi. I feel like I’m reading a very similar story to ours. My hus
    Band’s co-workers came to him with concerns about his not seeming to follow things, trouble with communicating, talking in circles. I look back and did notice odd things but this really was the beginning o f us realizing that something was wrong. So we visited a neurologist and Steve went through all of the physical send neuro-psych tests. He then diagnosed with semantic dementia 5 years ago at age 49. It’s a very lonely existance. Some people have helped us both most of our so called friends have disappeared. It is very hard to watch the decline. My husband stopped driving this past April. He used to do volunteer work but a lot of it has disappeared. Now I’m looking for companions or adult day care so I can work; not so much for the I come but for my sanity. If you ever want to talk, email me. Take care.

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  3. Pingback: Early Onset: A Challenge to Diagnose | crlives

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