Archive for February, 2015

Valentine’s Ashes

Thank you Patti Brown for this amazing photo. 2008.

Thank you Patti Brown for this amazing photo. 2008.

I suppose this time of year is unbearably hard for those who don’t have a Valentine. I have never been a big fan of the holiday, even when I did have a Valentine. Now it seems every commercial, every restaurant, grocery store and online pop up ad flashed a “YOU DONT HAVE A VALENTINE” in my face. Yes, I do have a Valentine. A man who has loved me when I am not worthy and who has forgiven my faults and shortcomings for many years. A man I admired and respected enough to marry and have a family with. So, I know I have a Valentine, but according to the ad executives, I don’t. Because he can’t buy me jewelry or chocolates or the perfect Hallmark card. He didn’t even remember or seemed concerned once he was given his chocolates and told “Happy Valentine’s Day”. That is the part that stings now. He was at the point where he couldn’t think far enough ahead to plan for a holiday. Now, when the holiday is here, he is oblivious to what his role would have been. Each year that passes and each holiday that has expectations attached reveal the layers that have peeled away in Jim’s mindset.

I spent Valentine’s evening dropping Frances off with a friend so she could spend the night and then go skiing the next day. I am so grateful to that family because she loves skiing and I am not going to be able to take her this year. When I dropped her off, the family invited me to join them for dinner. As I sat in their beautiful kitchen, watching them work together to fix a lovely meal, listening to the girls play ukuleles and joining in as everyone sang along…..my heart hurt. This was an evening that I would want to host in our own home, with Jim helping and our family being the warm and inviting refuge others want to visit. It wasn’t that I was jealous, amazingly, I wasn’t. It was just a bittersweetness and yet I was happy and having a great time. I love sharing time with them and love the fact Frances is able to visit and to be part of a family who can sing and cook together and go skiing. I love the kids being with other families and seeing what other relationships are like when one of them isn’t sick.

The next night, Jim, Brad and I went to visit different friends and it was the same.  Others working together to host us, fix a nice meal with lots of laughter and fun. Again, I was both happy and sad. I loved the fact we had friends to hang out with. I loved the fact that Brad was able to see the communication between other adult couples and play games with us and to witness a different side of marriage. Yet, I recognize that it is becoming more and more difficult to remember us as that type of couple: full of chit chat and hugs and laughter.

It must shine a magnifying glass on certain things in our home when the kids visit with their friends. I wonder if they notice the difference in marital relationships….. I am sure they do. They are observant kids. I wonder how all of this will eventually affect their own marriages and relationships…..I wonder so many things; all the time. My mind constantly seems to be going full throttle, but there are times it seems to be puttering out on me. I am forgetting words and at moments having a hard time saying exactly what I am trying to convey. It is so frustrating. I know it is the stress, but it also helps me understand how frustrating it can be for Jim to not be able to find the right words. And lately, he is having a harder and harder time.

I know I will get through this most romantic time of the year without a romantic partner. Yet, I can’t help but wonder how I will ever be happy again? I don’t mean with another man. I mean, AT ALL? By myself, with someone, with the kids….AT ALL? I know what it feels like to be loved, cared for and to have a partner; in the kitchen, on the slopes, with the kids, playing games, lying on the couch reading or watching a movie or just communicating without words…. in life….and I don’t have one anymore. I have always known I am an independent person and surely this must be coming in handy, but I don’t know that being a strong willed, independent person helps take the sting out of lonely nights and thoughts that can no longer be shared and dreams kept quiet and shows watched alone.   I am acutely aware of the singleness that is overcoming my life. Jim is fighting hard to stay with us, which makes my recognition of these feelings of aloneness and solitude more inappropriate. I am not going through a divorce. I am not part of a relationship where the husband is out all night and I am sitting home alone. I am not supporting a man who won’t go find a job. I am thankfully not caring for someone violent, angry or ungrateful. I have many things for which I am appreciative,  yet I am longing for a life I no longer have. I can witness it and taste a sampling, but I cannot have that happy home with an equal partner. The worst part is I had it. I had all of what I long for, and it is slipping away one plaque and tangle at a time.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)

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)

I appreciate what I have…but Miss what I don’t!

i-am-thankful-for-my-struggleThere is a little boy who is dying tonight. He is two years old and he has cancer. I don’t know his family, but I still hate what their family has endured and what they will continue to endure long after their precious son has left them. I see updates on Facebook from the family. We have mutual friends and as I have watched their fight and witnessed from afar their heartache, I have pondered life and the unfairness that happens in our universe. I see Jim, struggling to keep his dignity and to stay a dad as long as he can. And I read stories about parents losing their children. If I could somehow make it so that I had to endure the frustrations and constant sorrow I am faced with each day to save a child, I would. But as much as I wish my suffering and Jim’s suffering could abate the pain felt in another home, I know it won’t. I know I will continue to watch as Jim fights his own battle the best he can. I am only a witness to the things I recognize as more heinous than watching Jim succumb to the plaques and tangles multiplying in his brain in another family…. Losing a child would be one of them. I am so, so grateful for Frances and Brad and somehow, dealing with the pending death (albeit not tonight or tomorrow) of my spouse, I cannot help but be so grateful for having them with us and in seemingly good health. It isn’t lost on me that I may be suffering a loss, but it could be worse. To the parents who are losing a child or who have lost a child, I am so sorry. I wish I could somehow take the suffering our family must endure and replace yours. I suppose it would make all that our family is going through worth it….if we could find some good in our pain by easing the burdens others face. I sometimes wish Jim would just die. Now. I don’t really want him to die, but as I have mentioned several times, I don’t want to be part of what is coming. It is this unbelievable awful thought process: I don’t want Jim to die, but I don’t want him to continue to decline in cognitive abilities and don’t want his children to watch him suffer in a way that they can’t possibly change or help in any way. I know that Jim doesn’t want to become the person he is becoming. It can cause so much internal stress thinking about it all, the best way to handle it can be to shut down. But dementia patients need you there for them for years, so you are not allowed to shut down for long. You must stay in the present, to help them and in my case, help our children. The irony cannot be missed: my partner, my go-to person is the patient. The stress and the heartache and the gut wrenching thoughts would be eased under normal circumstances because Jim and I would discuss them and he would be my sounding board and my help. I have come to realize with much clarity that even marriages in troubled times have two partners. Partners that can communicate. Partners who can help with whatever needs helping; dishes, yardwork, decisions on finances, disciplining the kids, vacation ideas, what to do with free time, what to watch on TV, what to do about life situations that happen with friends and family, co-workers, cable companies, etc. I have opportunity to sit back and watch relationships now with a different thought process and a much different appreciation. Even my friends who complain about their spouses (and as they do they usually apologize to me and tell me they shouldn’t be complaining to me of all people) have to recognize the simple pleasure of having a partner who is there, in the moment and who can carry on a REAL conversation and even if they are driving you crazy with the point of view they have, at least they have a point of view. At least they can listen and comprehend you are upset or need to vent or have ideas that they are helping you mold into realism.

The big question is would I suddenly appreciate Jim if he miraculously went back to the man he was 10 years ago? Would I find the fact he was able to be a husband and a father in such a magnificent way enough? Would I be content and appreciative? I certainly like to think so.

Since I am reminded daily there is no cure and there are no treatments that can correct his decline, it is a moot point. But I think it is reason enough to pause and appreciate where he is now and how much we have to be thankful for. Starting with two amazing kids who continue to bless us with love and lots of great memories. And a man who doesn’t give up and who tries his best, each and every day.

Frances and Brad in Alaska, July 2014.

Frances and Brad in Alaska, July 2014.

 

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)