Doctor Day Sucks!

Jim and I. Dec 2014.

Jim and I. Dec 2014.

Today was DOCTOR DAY. I think in general we usually look forward to going to the doctor, even subconsciously, to get healed. Healed from whatever is ailing us. Healed from something we may not even know is wrong. Healed from things that hurt a little and things that hurt a lot. Eventually, with the help of the almighty physician, we are healed. Unless we have something that they just can’t heal. ALS. Huntington’s Disease. Lots of types of cancers. Alzheimer’s Disease.

Today, I saw the pain of not being able to help us on Jim’s doctors’ face. And in his words.

To start with, they called Jim back without me to do the mental exam. I knew it would be lower than the last visit nine months ago, but I didn’t realize quite how low. When they called me back, I could tell the nurse, who we always see, was a tad “different”. I knew that she had seen the difference in Jim. I knew it was bothering her.

When the doctor came in, he was his usual pleasant self, but when we got down to business, he fumbled over his words. He was struggling, because as a physician you are trained to heal. You are trained to find out what is wrong and to fix it. He can’t fix what is wrong with Jim. Jim went down 6 points on the memory exam. I looked at the drawing of the clock which is always part of the exam and I saw there were no hands and the numbers were wrong. My heart sank. Even though I know he is declining, seeing it in black and white is hard. Hard. For ALL of us.

When I entered the room and it was just Jim and I, he started to cry. He knew. He knew he hadn’t done well on the test. He isn’t far enough gone to be completely oblivious. This is so painful to watch. This wonderful man, crying and realizing what is happening to him and not being able to do one single thing to make it better. He told me he wanted to move away. I asked him why. “So the kids don’t have to see me like this. I don’t want them to see me the way I am going to be.” It took every ounce of self control not to burst into tears with him. I saved that for later.

I recently went for a walk with a friend. During our hike, we discussed Jim and lots of different sides of being his caregiver. Part of the conversation went like this:

Me: I don’t really feel sorry for myself. I think sometimes I come pretty close, but for the most part, I don’t think I am.

My friend: Really? I thought from reading your blog that you were pretty sad most of the time.

(At this point I was a little surprised since I didn’t know she was keeping up with this blog)

Me: Not really. Yeah, I get sad, but I can’t stay that way all the time. It would be awful for Jim and for the kids.

My friend: You don’t feel like you feel sorry for yourself?

Me: No. I feel sorry for Jim. I look at him and I just really feel sorry for him. And I think about the kids not having him for a dad. He was such a great dad and they won’t remember all the awesome things he did with them and for them. I am a much worse parent and it’s actually sorta sad that he is the one leaving them and not me. He would be more patient and teach them so much more. I get really sad thinking that they won’t have him around and they will watch him decline more and more and it is taking over their whole childhood.

My friend: You are a great parent. You shouldn’t say that.

And then we walked. Because, what else was there to say?

Back to the doctor visit…. The doctor recommended we try Namenda and the Exelon patch again. As I have written in past blog posts, we have tried EVERYTHING and I am not going to rehash why Jim is off all meds at this time. But, I believe we are going to give them another try. He told us that sometimes when a patient is further along and showing increased symptoms the medications can show help in lessoning some of the symptoms. But of course, they aren’t a cure. As the doctor spoke and Jim listened, he started to cry again. He understood he was hearing that he is declining. The doctor told us we wouldn’t do the memory tests anymore because there wasn’t a purpose any longer and it was causing stress. He also told us we didn’t need to schedule an appointment for a set amount of time. We would start the medications and call in as needed. There is no point in seeing him as Jim declines because there is nothing else he can do. This is not to say we can’t come see him and won’t, but there is no set six month or nine month time frame anymore. Just whenever we feel we need to see him.

Whew. I am crying as I write these words. My heart aches for not only Jim, but all of us who travel this journey with no help. No way to fight. No hope.

I am not a scientific person, but many times I wish for a scientific answer. How long does Jim have? What trajectory is he on with the decline he has shown? It may seem a little morbid to some, yet others will completely understand. I think it is human nature to want to know how long you will have to endure a form of torture and pain. When will this be over? When will Jim not be in pain? Actually, that is more of a clichéd expression. Jim isn’t in pain. Only when he realizes he is leaving his children. Most of the time, he is happy go lucky and in great spirits. He has a great attitude and is very pleasant to be around. He isn’t angry or sad or even moping around. He has the best attitude he could have and I am so proud of him. So when I say something about wanting a time frame, it isn’t because I want him to be gone, it is because I am trying to plan, trying to figure things out, trying to adjust and have a concept of what lies ahead. I believe people do this in all aspects of life; whether it is planning for high school, college, their first job, marriage, having a child, moving to another country, moving out of their parents home, changing jobs, etc. We are always looking ahead and asking for time lines.

It was mentioned that Jim was declining faster than some, but not as fast as others. I guess you would say he is somewhere in the middle. Not a fast decline but not a slow one either. I didn’t ask the doctor about a time frame. He wouldn’t be able to tell me. Alzheimer’s Disease works so differently for each patient. And Jim is very healthy otherwise. I know this is a long haul. I can handle it. We all can handle it. But I hate that he is having to and I hate that the kids are having to. I hate that my friends have to take care of us and I hate that my parents must use up so much of their retirement years rushing to help us. I despise being the damsel in distress. I know Jim despises it too. He was our knight in shining armor and unfortunately, he knows he isn’t any more.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (22)

22 Responses to “Doctor Day Sucks!”

  1. Phyllis Gallagher says:

    This disease is horrendous. My husband cant even write his name. His daughter found out this week, ive known for 6 months. Why is everyone else oblivious? John is 56 he is deteriorating rapidly. Really I thought I knew but I didn’t. There’s no help, its awful. His family is in denial and very busy with there own lives. Its much more difficult than when my mother had it in her 80s. Anyway you are not alone, im not alone but the lonliness is overwhelming. Thinkibg of you

  2. meredith lawrence says:

    I refuse to force Jay to the doctor any more. His memory test shows he is slightly below normal (whatever that really is) but the doctor is now saying it’s not dementia it’s the pain medications. He’s on less medication now than he’s been on in 5 years but his memory issues are worse. Huh? I know the original diagnosis of trauma induced dementia was right. I know his history & I see the changes. This strong man leans on me for everything now. On a good day he remembers my name and on a bad one he calls me his ex wife’s and doesn’t even notice. He has enough doctor’s with the chronic pain and other health issues. I refuse to take him to somebody who can’t cure him anyway. It’s too hard on both of us to try to convince everybody that something is wrong.

    • Jodi Swager says:

      Meredith, I feel for you and your hubby. You and I are in very similar situations. My hubby is 49, he loses points every year but the Dr kris saying it’s his pain medication, his infections, multiple surgeries. He has good days and bad. Lately he’s been able to drive without getting lost, though I don’t let him go out by himself if I’m awake. Though there are days that he’ll get lost in the store and call me scared. We stick with short term memory loss and leave it be.

  3. norm says:

    As you said, the time frame is different for everyone, a lot depends on what part of the brain is affected. The seeming healthy part is normal, they are healthy. They will forget to drink or not drink enough, that will be fatal. The really hard part is preparing yourself for the day when one of his auto systems shuts down and he goes into a coma and you have to resist calling 911. Those people are trained to save lives and all they will be able to do is prolong your family’s pain.

  4. Michelle fox says:

    Karen, I have refrained from commenting for a long time. I just cannot based on the many things presented. I will say, having lived this with Mom and as a social worker, I am so happy to hear NO MORE doctor visits and no more tests!! They are demeaning and serve no purpose at this point. Look what that did to Jim!! Shame on them! You also realize, you must, that “some” doctors, actually many, and the pharmecutical companies are in cahoots. They all make money off of prescription medicines. Do you REALLY think someone that more than likely failed the MMSE needs to be taking meds that slow the progression?? There are studies out there that show it is like taking a placebo. Those drugs help only in the beginning stages. Why would you want to prolong this if it were true anyway?? You ask how long?? If Jim lives all they way through the despairs of Alzheimer’s Disease, it can be years yet. Mom lived with it for 12 years of her life. As a social worker, I have seen early onset, go on for years of there is no co-morbidity.

  5. Sylvia Silver says:

    God Bless you and Jim and your kids.. Always in prayer

  6. Nancy says:

    God will graciously restore the good memories to replace the decline in time. Blessings on all of you.

  7. Tom says:

    Karen, My wife Linda & I had the exact same visit 2-3 yrs ago. She scored a 9 on the MMSE & that was the last time she took it. We also added Namenda to Aricept for the 2nd time. Same results – no obvious stabilization and more confusion. We stopped going to the neurologist soon afterward as he said there was nothing else he could do for us & insurance changes were an issue. We went back to see him 2 weeks ago as we wanted to do an EEG to test for mini strokes. after examining her he just looked me in the eyes and said “I’m sorry”. We tried to do the EEG the following week but it was a disaster trying to keep the probes attached. Gave up after 20 minutes. By the way, I was the Tom on you online chat two weeks ago. As my wife was diagnosed at 58 & me being 2 yrs younger, we shared some of your issues. I am amazed at the clarity & depth of your posts, and they are extremely helpful to so many of us. Thanks.

  8. Elizabeth Brewer says:

    I will never forget the day that I walked into the office and found D. with the little strong box, looking at it helplessly. He had always been so careful with the money. Now he could not make deposits and the bank teller had asked him to fill out his own deposit slip. There he sat with his cheques cashed and about six thousand dollars surrounding him. The bills had been unpaid and it was another scramble to find out to whom we owed what and fix it. It broke my heart. As horrible as this is, I truly believe that if we could have a time line and know the future it would some how be easier. I know we can’t. Therefore, keep on just the way you are doing (so well to those of us journeying with you)and know you have a legion of people who admire and support you. Give Jim a hug for us and give Brad and Frances a high five! Then do something special for yourself because we love you and you need it.

  9. Kathi Klotzer Chasse says:

    Jim, you are always in my thoughts and prayers… I love you…

  10. Joan says:

    We had this conversation yesterday my husband could no longer draw the clock,it was heartbreaking.Sure would be good to have some answers,he is not the fastest and not the slowest having declined 3 points since august.Read On Pluto and gave his Dr a copy very similar to my 59 yr old husband with hallcinations also.We did the trip to Ireland last year,may there be a cure soon so our children don’t get it.Hugs to Jim.

  11. Mary Ellen Curran says:

    Karen, I have been following your post for about a year now. My husband Jerry is 54 and has the same cruel fate as Jim. he was diagnosed at 50. When i read you blog our husband could be clones. So similar in every way. We have two children also, but luckily they are grown- kate 26 and zack 21.I need you to know that you have saved me on so many days. When I read your blog I feel like you are an old friend who live close and give me support. You are such a amazing , strong women. Please continue to find your inner strength. I someday hope to meet you one day and give you a hug for being such a advocate for this horrible situation we find our families in. God bless you and your family.
    Warmest Regards, Mary Ellen Curran

  12. Francine says:

    I read your post everytime my client, Jennifer, leaves a link to them on her FB page. It hurts my heart to because I know the long road you have to follow. My grandmother had Alzheimer’s. She lived another 20 years after her diagnosis. Every time I look in the mirror, I see her face staring back at me as I look so much like her. I know the kind of woman I am and to think of being “trapped” like that is overwhelming. I say good ridence to those appointments! They frustrate patients and families anyway. Stay strong and know that you are in my prayers.

  13. Tammy says:

    karen,
    Although I cannot feel your pain, I am in tears as I write this. You are so strong, and you have to be; to be the backbone for Jim, Frankie, and Bradley. You have to be an army of one; and I know personally that it can be draining, mentally, physically and spiritually. I admire your courage in the face of heartbreak, and your poignancy when it comes to being honest through your struggle. I am continuing to pray for all of you, and please know, I am here if you ever need me❤️

  14. Karen, Joe passed away on Jan. 31st. Memorial service on Feb. 4th. We have grandchildren whose birtdays are on 1-31, and 2-5. Joe was in a coma 24 hours. His eyes opened, I gave him kisses, he had a big smile on his face and took his last breath. I have gone through the first 5 stages of grief these 11 years, now will figure out how to get through stages 6 and 7. I am not lonely now I feel that now Joe is watching over me. I haven’t felt that for many years. I took Joe off of Namenda and Exelon maybe for 2 months. I decided to put him back on his meds and he showed improvement for a little longer. I invite you to view Joe’s Memorial service. His CD’s were played as the people came in the church. Google… Wilkirson Hatch. type.. .Joe Johnson..2-4-15 click on video. .It was and is a celebration of life. I am finishing up a book about us living apart…being his mom as he sat in my lap one day, His last words to me, “I love this girl” and living these first days after his burial and believe it or not I am better than I ever thought I’d be.. I went to a funeral today. One song was “I’ll Be Seeing You”. I cried but am grateful to go to the funeral of my friend of 63 years. Look for the moments of Joy, try to skip thinking about the reality you live each day and love only love will bring you to the other side. Prayers to you, your children, and Jim. I don’t know you but I love you…my sister in loving.

  15. Jaye Ramsey Sutter says:

    My Mother received flowers from my husband and I today. My Dad died June 23, 2014 and knowing he would not be sending her those flowers was very important to us. Oh, Daddy. It is still so raw. His memory test broke my heart. “I want to get well,” was what he wrote. Some times he was there, other times he was a stranger. Thank you so much for your writing. You matter to me and my family. You are not alone.

  16. Judie says:

    Karen, I am praying for you and your family! Thank you for sharing your journey through this horrible disease. My precious Mom passed away from Alzheimers in Sept. 2014. It was so hard to see her go through the stages but I am so thankful I was able to be there with her until the end. I miss her dearly each day but I take comfort in knowing she is with her Savior and Lord and is no longer suffering. God’s blessings to you and your family!

  17. Kimberly Smith says:

    Karen, I just want to thank you for sharing your story. I found it strange that just this past week, I was researching Alzheimer’s stages, average time frames for each stage and average life span. I looked at this before in the beginning after my husband’s diagnosis, but he’s getting worse, much like your Jim, slowly and is still aware that he is declining. I’m a planner and have always thrived by knowing what to expect (unless something major happens) each day, month and so on. Well, all of that is out the window now. My husband John is the picture of health. He has always taken good care of his self. Always looking so sharp in his State Trooper uniform. He requires so much help with everything now. He is 58 and has trouble with pretty much everything. Now that my Mother has moved in due to vascular and Frontotemporal dementia my life and our three boys have been turned upside down. I feel like I’m in a constant state of grief between the two of them. I, like so many wish I had never heard the word dementia. Most of the time they are in good spirits. They are not even aware of the stress it puts on me or the boys. My husband’s neurologist at UAB Birmingham, stages Alzheimer’s as mild, moderate and severe. We are in the middle of the moderate stage, slipping a little every few weeks or so, then he will plateau, until the next decline. If nothing else, it has taught me to have patience, to live day by day, sometimes hour by hour and all plans are tentative now. We have to wait and see what tomorrow brings. Thanks again for sharing. There are times your blog is about something I’ve actually been through that week and it helps me so much. Praying for you and your family. Hugs, k

  18. Lynne says:

    My husband is a bit older than Jim. But at 62 he is the picture of physical health. No other issues at all. Probably about 6 or 7 years into the disease. I too want to know our time frames. Six months ago I decided I would set my own plan regardless of not knowing. I persuaded him to move to a retirement community where there is a continuum of care so as he progresses I have onsite help. I sold our house and we moved 4 days before Christmas. He has continued to slowly decline but the interaction with others here has helped his mood tremendously. He is nearly what I would call happy. We play pool and ping pong although he forgets the rules every 3 minutes. I still work and the peace of mind I have from the house and lawn maintenance being taken care of, and him having regular meals at the community center (and me sometimes!) and knowing he isn’t just sitting in front of the tv every day, is very reassuring. I encourage everyone who can to look into this as an option. I didn’t want to move, and I am the youngest person at 55 in a community of 400, but my burden has been lifted a little. Oh, and we also asked for appointments no more than once a year, and don’t do the dreaded “questions” because it just made him feel bad. But we are trying Namenda ER and Aricept combo.

  19. Kathy says:

    My husband who is 64 has Frontotemporal Lobe Dementia. We are lessening doctor visits for the same reason. Just too hard on him. Since he also has Primary Progressive Aphasia, we were encouraged to go to a Speech specialist for help with communication. It was of no help, just made him feel stupid. Much of the time he expresses feeling useless. It’s so hard because he can’t do many activities. I’m planning to send him to an Adult Day Care with the hope that he can be more active there.
    Blessings to you and your husband as you travel this difficult road. Many are traveling with you.

  20. Janet says:

    Your column broke my heart to read. When listening to Obama’s State of the Union address I wondered why Alzheimer’s wasn’t mentioned. I pray for you, Jim and your beautiful children. Thank you so much for writing.

  21. Sandy says:

    My plea to you is to stop reminding him that he’s declining. It’s so degrading. Don’t have reporters sitting in front of him while you tell them how hard it is. Don’t ask him if he realizes that your “couple” passion is gone. Don’t ask him to prove what he knows or doesn’t know. It helps no one. It just causes extreme sadness.

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