Mrs. G, Break down your wall…

Jim getting breakfast at a diner before our first day at the NIH.

Jim getting breakfast at a diner before our first day at the NIH.

I want to tell you what our NIH visit was like. To put the experience; the stress of waiting, the drive up and back, the silence, the testing that shows progression, the knowledge we are participating in something that will help (hopefully) many others…..there are many more emotions and thoughts to express than I can possibly convey. I wish I could somehow share with you the FEELINGS of visiting the NIH.

Security at the NIH.

Security at the NIH.

When you first step onto the CAMPUS of the NIH, it is a little intimidating. If you have ever been to a college campus, that is what it is like. But behind a guarded fence. Where you must first pass through inspection. An inspection that is more thorough than airport security. Then you find your building. And it is LARGE. Larger than most college campus buildings and so confusing that you will get lost. Many times. No matter how often you return. And this building has two gift shops and a book store and a barber shop. And a grand piano in the grand lobby. And two cafeterias. And valet parking (you must get validated.) And a coffee shop. And MANY banks of elevators.

But, no matter how grand the piano or the cafeterias or the lobby, you are still in a waiting room. Sitting in an uncomfortable chair. Watching a TV show you would normally not be watching. Eyeing others that are walking past you; wondering what they are there for as they are probably wondering the same about you. All the magazines have been thoroughly read. You have gazed upon the magnificent artwork and spied the beautiful fish tank. But none of these things keeps you from focusing on the reason you have driven many hours and organized childcare (THANK YOU AGAIN) and put yourself in this place of waiting.

Building 10 at the NIH.

Building 10 at the NIH.

Our doctor at the NIH is wonderful. He listens. He talks. He listens. He talks. It is a great experience on so many levels. If our country’s healthcare could follow the pattern I see when we are there, well, let’s just say many people would still be around and the complaints would fall drastically.

The tests Jim participated in were the exact same ones he did 2 years ago. This particular study is looking at inflamation in the brain of Alzheimer’s patients.This will allow them to see the changes that have taken place. In my mind, Jim has declined drastically. There are major differences and it is all much more noticeable. Our doctor told me there were some minor changes. I mean, 2 years ago he was still working full time. Two years ago he was only showing symptoms every couple of days. Now it is daily. Hourly really. Hmmm. How is THAT possible. I know he,(the doctor) sees much worse. I know much worse is coming our way. Believe me. I live, breathe, sleep, eat and dream of it. But I haven’t been able to plan effectively  for it.

Jim ready for his PIB test.

Jim ready for his PIB test.

So, Jim was scanned. He was poked. He was measured. He was tested. And he will continue the tests in August when we return to finish this round of the study. Then we will get some results.

In the meantime, I need to make a MAJOR decision on his driving. I have decided to relieve myself of some of that burden by having him tested by an organization that does such things. It will cost $400, but I suppose it would cost much more in the long run if I didn’t and something happened. I don’t want to make that decision all by myself. And I don’t have $400 to have him tested monthly. I am starting to understand how people lose everything when this disease happens to them. Financially we are just beginning and I can already see where we are headed. And it ain’t pretty.

Jim had a major decline when he lost his job. Then his brother died from Alzheimer’s Disease (the same week) and he had an even bigger decline. Then 3 months later his Dad passed away (from cancer) and there was another decline. I know when I tell him he shouldn’t drive anymore there will be another decline. And our family life will be turned upside down in so many ways. I think all of this will become even more real. For me. And for the kids. I know it is coming. Jim knows it is coming. I am so grateful for his positive attitude and his lack of anger and his natural kindness. Sometimes I wonder if it makes it even harder.

I am so sad. I am so, so sad. I have finally realized through our trip to Bethesda that I have distanced myself from Jim. I have pulled away trying to protect myself. My natural inclination when I am hurting is to pull away; to find other things to concentrate on and to put a wall up. When we were alone for two whole days, focusing not on baseball games or sightseeing, but on Jim and his health, I realized I am scared. I am lonely. I am mad. I am pulling away. I am trying to move forward while being held back and being held back is what is propelling me forward. I think Jim feels the same way. I don’t think he has put a wall up.I don’t think he is capable.  I think he is scared. I think he is sad. So sad. He loves me and he loves Frances and Brad more than anything. He is absolutely besieged with sadness at the thought of losing us…..or us losing him. This whole crappy story is just one sad emotion after another. I can not live like this for years and years. I can not raise my children in this kind of sadness for years and years. I will not break my spirit or my soul to this disease and this utter sadness. I WILL FIND A WAY TO WIN. I will raise money and awareness. I will speak when I am asked to speak. I will write when I can. I will give interviews whenever I am summoned. I will do whatever I can to give the NIH more money; to bring awareness to the masses; to give hope and spirit to those that are fighting the same battle. It is not easy. Honestly, it is sucking me dry sometimes. But I am a very STRONG and DETERMINED woman. I have found my calling. I have found my true purpose on this Earth.

Date night in Bethesda, Maryland.

Date night in Bethesda, Maryland.

We will return to the NIH in August. We will listen to the results. We will keep moving forward. We will cling to each other and we will gather the wagons and fight until the end. It is what we are wired to do. There is no alternative. I am so grateful that there are researchers that literally are working around the clock to help us find a cure. I am not a scientist in any way, shape or form. I wish I was. I cannot contribute that way. What I can do is share our story and help the scientists get funding and get support to continue the long hours they have already dedicated to this cause. I admire and I thank them. I thank you for reading. I thank my parents for listening. And my friends for helping and volunteering. It really does take a village.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (8)

8 Responses to “Mrs. G, Break down your wall…”

  1. Diana Hull says:

    I too felt the same way you do now. I tried to ignore what was happening and saying he would be ok. I was watching the man i married 40 years ago Leave me a little at a time. I made the decision of him not driving I joked with him and told him it was my turn to drive him around because he always did most of the driving. I hate this diease I try to make everyone around me get to know this diease and what its like. I try to get everyone involved. Thank you for sharing your thoughts. Even tho I have lost my husband its good to know I wasnt alone in these thoughts.

  2. Connie Howard says:

    I didn’t have to make the decision regarding driving.. When Glenn tried to renew is license, he couldn’t answer the questions. They had us speak with a supervisor and he said we needed a doctor to say he was ok. The doctor said he really couldn’t agree to him driving. That was it. We leave next week to go to University of California San Francisco for our 4th year of research testing. It is three – four days of test after test not only for Glenn but I have appts too. I know this might not help him but hope it helps others. Last year he was had the new PET scan that can see the plaques etc. Now than can at least have a certain degree of confidence in the diagnosis of early onset alzheimer’s disease and don’t have to wait for an autopsy. Glenn has had a lot of aggitation lately so he is not on respodril? The “adult day care” closed because the govt won’t fund medicare and medicaid patients for this kind of help. One facility with day care and long term care said he was too young for help. In the process of working out his care as he can’t be left alone. He would get very agitated and destroy things and got worried for his safety. Everyday I thank God for the day and a think of what I am thankful for. It helps my attitude even thought I grow very weary and tired. My hope is that God is in control and my life is not about me but His purpose and plans. I encourage you to take one step at a time and live in the moment.

  3. amy peterson says:

    Karen, This is just one of the bumps in the roads (no pun intended) with the driving issue. Drew voluntarily gave up driving, but then it was an arguing point anytime he got frustrated. Fortunately he lost his keys, and a few days later I “lost” them for him. (Same scenario for the keys to the airplanes!) After misplacing his wallet, it just disappeared, so he had no license. Now it was no longer MY fault…just the DMV. I agreed I would take him to the DMV, but he would need to take a driving test (knowing he would never be able to pass). You doctor may be able to help you in this area, suggesting he give up the keys, or request a driver’s test. It should not cost $400/mo. Hang in there. You are a strong woman and this blog is a testament to your stamina. But be careful to take care of yourself! We don’t realize the toll it takes on the caregiver. My thoughts are with you, and I’m sending you positive light and love.

  4. Marsha Carpenter says:

    I know you feel alone – many times I feel like no one understands, and for the most part only those of us who live this really & truly do. When my husband ran a red light he totaled his truck & the other persons car. Every day I thank God no one was seriously hurt. His neuro & his diabetes doctor told him to give up driving. On the way home he screamed at me and told he I told them to say that and the light was green & they were wrong. I abruptly pulled over to the side of the road and said, “look, these are doctors, they are thinking of the safety of you and others, I didn’t give you this disease, I am with you every step of the way, I don’t want to be the only driver, but it is what it is and I can’t help it, so yelling at me will not help”. He didn’t say anything and two weeks later he gave up driving. He has photo ID from the DMV and he carries a key to the car. At this point he doesn’t not know how to start it but likes having the key. We traded in both cars and got one. I hate being the only one to drive, I know what we took from him but it was because we cared and it took a lot for him to realize that. Now he does not know how to put gas in the car, air in the tires, or even roll down the windows. I even buckle his seat belt. So getting over that hump will be hard. It will require family or friends talking to him as well, letting him know you worry about him & that they care. Have the doctor talk to him, more than once. I raised five children, when they were a danger to themselves I had to do things they didn’t like & they got angry. Jim will never “grow out of this and “get it” but you will get past this, I know because I did. I have hid so many things at times I find things he and I both forgot about & really, it’s funny. As for all the testing, sometimes I feel as if I live at the hospital but all my life I have had to know what I was facing and so as much as I hate it, I know what is ahead & where we are moving. Keep the family and friends that care & keep writing here. You are walking a path and sharing it. You have no idea how much that helps others. God give you peace, I send you huge hugs.

  5. Lee Ann says:

    These are some of the steps that you just learn to adapt to. With every step, there is that sadness, anger, more sadness. but as you get more used to (as if you ever really get used to it) , it should level out a bit. I think it would be a good idea for you to go to a therapist or a support group. Support groups are usually free, and therapists will take a graduated rate depending on your income. It can’t hurt you and it certainly can help you adjust to all of the changes you are going through. Marsha, be careful about him having a key in his pocket. I once worked in a nursing facility and one of the CNAs left her key in the ignition. And I drove into the parking lot as one of the residents was driving out of the parking lot, onto the street, and across the sidewalk and hit a house.

    What is it with men and keys? Working in a special care unit, the big upset is when one of the farmers can’t find the key to the tractor. We have to go through this big rigamarole about “Junior took the key so he could change the oil.” etc. etc. I think men’s identity is involved with whatever vehicles they are in charge of.
    Take care, Karen. Things are rough now, but once you can adjust a bit, it will be better.

  6. Wendy says:

    Karen, I was blessed almost 30 years ago to be accepted into a study on a very rare disease at NIH. I was very young, newly married and scared beyond belief. They literally saved my life and afterwards saw me once a year for almost 9 years to give me my much needed and very expensive medicine. It is a wonderful, if overwhelming place. We are there because it can be a last resort for some of us. I was grateful to know that my study helped others like me.
    All these years later and I am watching my husband deal with YOAD and I read your post and again feel grateful for the NIH, their tireless work and for the folks like you and Jim who willingly enter the programs. I hope it helps someone in the future. It won’t help my husband, or yours, but someone somewhere later…maybe even our children. Thank you again for sharing. I think of you and Jim often.

  7. Lynne Peterson says:

    Karen, I read your blog and pray for you and Jim and your children. I retired this year so I could move in with my folks in Portsmouth. Daddy has Alzheimer’s and Mom has dementia. Many times, you can’t tell one disease from another. I understand some of your frustrations and sorrows, but I know Daddy, at 87, is moving toward an ending that is meant to be, while Jim is still so young. My heart goes out to you, Karen. When I return to Hilton to live, I’ll be happy to do whatever I can to help you.

  8. Diane Chadwick says:

    Thankfully my mom gave up driving on her own…..she has AD. Dad on the other hand has been in the hospital for the past 6 weeks–it started as a UTI and it went down hill fast. He is now in PT and is slowly gaining his strength but he is not going to want to stop driving although he should. I am going to talk to the doctor before he is discharged and talk with him about dad’s driving or not driving. It is going to crush him and his independence. He will not like it but it has to be done. I believe my dad is headed down the same road as my mom with AD….I see just the beginning signs. This disease will drain you (it has been a nightmare for my sister & I these last 6 weeks)we have been caring for mom 24/7. During this time she has become combative and we are going to have some respite time. It is expensive but we need our sanity. Dad will still be in PT, he was not happy about it but we told him it is probably time for mom to go to a memory care facility. It is a heartbreaking choice but I have grandkids that I want to see grow up. I don’t want to end up in the hospital with a heart attack or stroke and the caregiver is usually the first to fall. Take of your health both mentally and physically. I love your blog and pray for your family. God Bless.

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