BARRY’S JOURNEY – One Cheese Burger Too Many…
No, I am really not trying to kill you Barry.
After staying in Red Wing for the month of October, I hit the ground running in November. I had three out-of-town speaking engagements along with Barry’s birthday on Nov. 3. After the first trip, I organized a little party for him at his care center. I invited some of his old friends and, of course, my family. I brought beer, snacks and some White Castle burgers that were Barry’s favorite. His artwork in the 1970s revolved around the White Castle burger and the five holes in the hamburger patty. He did large paintings of the burgers and also incased them in a liquid plastic that eventually hardened. I always teased him that I was glad he became more of a businessman rather than staying a fine artist. Not many people wanted White Castle art hung on their walls.
I felt a bit frantic the day of his party as more and more people showed up to say hello. I made a lot of mistakes that day. First, so many people overwhelmed Barry. He became a bit agitated, but I wasn’t really paying attention to that. I decided to first give him a beer, although he hadn’t had a beer in a long time. I chose a strong one that he quickly sucked down with a straw. Barry has been on pureed foods for a couple of months now — but in my frantic state, I decided he could handle a burger. The burgers seemed so soft and small. What could happen? Well, after a few bites, he began to choke. The entire group stopped talking at once. It was a scary moment as Barry gasped for air, unable to swallow the greasy bite. After a few slaps on the back, some of it went down. I scooped out the rest from his mouth with a spoon. His days of eating a burger were now forever over. People resumed visiting with each other once the crisis
passed.
My son Mike took me aside and said, “Mom, calm down.” I needed someone to tell me that I was trying too hard for Barry to have fun. There is absolutely no fun to be had in advanced stage frontotemporal demential (FTD). I took Barry over to a couch a little removed from the crowd and two of his old buddies from high school sat with him. That made things a bit better until the beer got to him. Soon he was looking cross-eyed and listing from side to side. It took two of us to get him to his room and into bed – where he passed out. The party ended quickly as the guest of honor slept it off in his room. I think everyone was happy to get out of there. I know I was.
The next morning as I walked with my friend Talla, I told her about the party, the choking and the beer. I wondered aloud why I was so frantic. She said, “You were just trying to make everything seem normal like it used to be.” However, nothing is the same now no matter what I do and things will never be normal again. Was I trying so hard on Barry’s behalf, or was I doing this for me to have something normal in my life?
Next time I almost killed Barry
Life went on as usual for a few weeks after the big party. With my travel finished, I could check on Barry each day and take him for a stroll. Barry is now quite thin and shaky when he walks. On this day, I felt a bit frantic again and wanted him to get his walk over because I had a long list of things to do as I headed into the busy holiday season of selling books and doodles. I also wanted to work on a new book idea.
We were walking the corridors as usual, but I let go of his arm for just a minute when I turned to say something to the nurse. Barry kept walking toward a woman parked in her wheelchair near the elevator. His leg caught the edge of her chair and down he went! Dead weight going down hard. The sound of his head hitting the wall was so loud that my first thought was that he was dead. I screamed and I heard another scream, probably a nurse. Everyone jumped into action, but not me. I stood there unable to help or do anything. I felt so bad for Barry but, selfishly, I was thinking that now I wouldn’t be able to get everything done that I needed to do that day. I would be planning a funeral instead.
But the nurses got him up. Although his head was badly bleeding in two spots, he could walk. Paramedics were called and then it was off to the hospital for stitches. I felt bad for poor Barry — and for me because I knew the rest of the day would be spent sitting at the hospital waiting and waiting. It is hard to admit that I was thinking of myself as much as Barry!
The doctor at the hospital wanted to do a CT scan on Barry’s head, and I told them no – go read his paperwork. We waited and waited, and after a while they gave him medication to help him relax so they could finally put some staples in his head. He was shipped back to the care center bandaged and bruised. I felt guilty because he was injured on my watch, in pain and deeply confused. It broke my heart to see him like this — thanks to me and FTD. I wonder if there will ever be a way to let our suffering loved ones go when there is no longer any hope. After these recent, frightening incidents on top of everything else, I think a lot about this question.
But don’t worry Barry, I am not really trying to kill you. However, if there were a legal way to end your suffering, I would do that for you in a minute — as I would like you to do for me. Now I am afraid to walk Barry, afraid to give him a beer and anything except pureed food to eat.
His world is confined to lying in bed just waiting. I sit next to him waiting as well.
This is so honest, Nancy again I think a person has to live this nightmarish slow goodbye to truly get it. I understand and agree completely. I said the other day- if anyone had told the family the quality of life that would follow of my husband with his entire frontal lobe all but gone we would have agreed with the medical consensus to pull the plug. But one of my kids in particular wanted him to see the new grand baby and we hadn’t yet set up a committee of friends and relatives to take the kids and I out of this decision. It’s hard for everyone involved- almost surreal. And I’ve had a few people look aghast when I said we would never opt for this – he would hate it. Of course the judgemental folks have never walked this sad road and have no idea how the nuances of this slow goodbye is impacting each of us – particularly the once very creative person who is in the best nursing home but spends his days interacting with no one and unable to show interest in anything or anyone. Great job Nancy – documenting a subject most folks don’t want to touch cuz nothing about it happily ever after and perhaps brings up a not so pretty picture of the realities of brain and body deterioration. Thank you for drawing verbal pictures of the long goodbye. Love, Mary
I am so sorry to read about your episodes with Barry! You are doing your best to care for him and trying to make life as normal as possible with his declining health. Take care of yourself Nancy! I am so happy you were able to get your health insurance taken care of. It was great being with you at lunch last Friday. I hope that your holiday season will bring some cheer into your life. Love, Claudine
Thank you so much for the honest account of an unhappy birthday. We had a 15-minute party for Jim’s 68th in August. I picked him up from his facility, took him on the 10-minute drive to our older daughter’s house as we usually do about one day a week. Our younger daughter had come with her two little ones from California so that Jim could meet his youngest grandson. When we were all settled on the couch with the four grandkids, he opened his presents. He did not have a clue what they were for, or why he was opening anything, but he did smile, I think. Then, as usual, we went for a little drive and I took him back to his place in time for his dinner. I returned to our daughter’s house and had a nice, big martini before our evening barbecue.
The plan for Christmas looks remarkably similar. Jim’s LTC facility has beautiful Christmas trees and decorations, and I’m sure Jim has no idea what they’re for. But I’m sure he’ll enjoy the warm hat and the lava lamp we got for him, and he always enjoys a few short moments with his grandkids. Any more than a few moments and he gets antsy, of course, because he can’t understand what anyone is talking about. So, walk the dog, go for a short drive, and hasten back to the familiarity and routine of his facility.
Beautifully written and incredibly touching, I can’t imagine what you are going through.
You are one very strong lady! I can not imagine how hard this is for you! You write so beautifully and so honest. You are so talented in so many ways. Know that you are in my prayers.
That was so beautifully written. Well done Nancy Carlson! Thank you for sharing. Your experience with your husband is very similar to my experience with my mother who suffered with dementia. It brings me a certain amount of relief to see my almost exact feelings expressed so honestly and eloquently by you. Believe me there are other people going down that road with you and are thankful to see someone expressing exactly what it’s like. My mother just passed recently. Although I really miss her I am enjoying a peace that I haven’t had for 4 years. Your peace will come too. I honor your courage, loyalty and hard work. It ain’t easy!
Thank you for the comment Linda! NC
You are a true and loving human being with a generous heart. Barry is lucky to have you. Whether he likes it or not. <3
Thanks Maryanne!
NC
Thanks Nancy. Tears running down my checks as I realize all this is yet to come in my future! You are one brave lady!
Thank you Jane..one day at a time. NC
I admire your strength, courage, honesty and generous spirit. Please let go of any self-recrimination. You are a beautiful and loving soul. Much love to you!
Hi, Nancy! It was nice to see you at the fair! I follow your posts and think how similar it is to what we have been going thru with my mom for some years with dementia.
Anyone who remembers her knows how she would hate her circumstances now. No matter how nice the place and great the caregivers, being locked in and tortured by violent and frightening hallucinations is not a way for anyone to live. Your post “to drug or not to drug” was especially meaningful to me, as we recently had to make the decision on how to best care for her emotional state and mitigate acting out against staff and other residents.
It is very sad there is no cure, no treatment to mitigate symptoms and no way to give her dignity at end of her life. Drugging her into a stupor so she isn’t terrified people are trying to kill her is not a great option.
We as humane people need to come up with a better way than just warehousing our loved ones, waiting for them to die and hoping the process isn’t too long and painful – although it is. Even one day of this is too long and painful.
You will get through this. My husband died 11 years ago and it is a similar feeling of unreality trying to get comfortable in a world where you were always part of a couple. Many people have said to me “I could never get through what you’ve been through”. My answer is very simple – you just need to put one foot in front of the other every single day. You are doing that and that’s all you can do. Just keep it up.
Happy holidays, Nancy, to you and your family, including Barry!
Thanks Amy for your insights. It must have been so tough when you lost your husband. Thinking of you! NC
Nancy,
I think that you are so brave to share your story and that many of us can learn from it.
You are an incredibly strong person and you are giving many of us an education in the flexibility of life.
Thank you for sharing,
Maggie
Your efforts were well intentioned and your reflections are honest. Thanks for sharing them. I agree with you about assisting the end. After all, we do that for animals out of kindness. Hang in there, brave woman. You are in my thoughts and prayers.
Thank you Janet hope the year is going well…NC
Nancy, I am so sorry you are going through another Christmas and New Year …waiting. As far as the beer is concerned it reminds me of when my brother was terminally ill with brain cancer…only 56 and they gave him 3 months. It was during Christmas and New Years.. The doctors said no beer. Well, another brother said, “why… Will it kill him?” My sister and I made a pact if we were ever terminally ill to bring each other beer to drink. One of the few pleasures left. After all… What is the worst thing that could happen.
Enjoy your beautiful family During this Christmas holiday…Kathy Heller
Thank you for your posts, Nancy. Your candor in the face of these challenges will certainly help others facing these stressors now and and in the future. Thinking of you with great fondness.
Today I came across your blog and wanted to take a moment to say thank you as I just finished reading this post, and for all the others that I have not made it to yet. My dad was diagnosed with FTD about 2 years ago, and its already been quite the journey. I am the youngest of 3 siblings and a total daddy’s girl, even at 26 years old with 2 of my own little girls. This post reminded me that regardless of my own feelings, my mom had her own set of them as well and that I need to support her more when she seems to down play so many things about dad and at times and stop taking HER feelings personally, after all, they aren’t my own and I know that she is hurting the deepest and giving up the most due to dad’s condition. I often don’t go to her when I need a good cry because her ways of comforting me simply don’t match my needs and its understandable. However this reminds me that she also needs someone to vent to at times and not feel bad for wanting to live her own life some days. I needed the reality check and reminders to find humor and to be human. Thanks again, I look forward to following along!