YES my life does feel like a circus. I am on the highwire without a net and the monkeys are running the show below. It might be easier to jump.
Category Archives: Daily Living
So here is another example of how dementia can quickly take reality and send it up in smoke.
We were camping last weekend and my husband says he’s going to bed. I am 4 sites away at a campfire with my parents and some friends and he heads back to our camper. About 20 minutes later one of our friends says “what is that noise” it’s faint and no one can figure it out so we ignore it.
Suddenly it gets louder and we all realize IT’S A SMOKE DETECTOR!!!!
It is coming from the direction of my camper and I just know it’s Pete so I get up and run. As I round the corner I see smoke pouring out the door of my camper and I yell back IT’S MY RIG!!!!! They all come running behind me.
I run in to find my husband attempting to disable the smoke detector while standing in clouds of smoke. On the stove is a package of Jiffy Pop with flames shooting out of it and the fire on underneath it.
He hadn’t even taken the cardboard off, was not shaking the pan and had no idea how to make it AND thanks to dementia his first instinct is to disable noisy annoying thing and NOT turn off stove and put out flames.
The reason the sound got louder is he had opened the door to let some smoke out. Thank GOD for that at least because just a few minutes more and the camper itself would have been on fire and he could have been killed or seriously injured.
Happy for good friends who each took a dog on a leash. My dad who made my husband come out in the fresh air (he wanted to just stay in the camper in clouds of smoke). We spent about 45 minutes outside while the vent fans and open windows and a few box fans blew smoke out of the unit.
Narrowly avoided a huge tragedy. And now I am contemplating how safe it is to ever leave him alone again? But 24/7 care is not an option in our world right now and he would resist anyway.
So today I wake up early, I have 3 hours to myself before I go to church at 11 and my husband is fast asleep. Yet I wake up to nightmare number one – a sick dog has left me a present by the back door ON MY BRAND NEW CARPET (was installed Wednesday so yes THAT new). UGH so first challenge of the morning to clean up dog poo off my new carpet. UGH
I survive that, dogs are fed and outside in their run for the day. Carpet has been steam cleaned and is looking no worse for the wear. It is Sunday and I still have two hours before church at 11. I get dressed and decide to do my nails, painting my toes and applying my new Jamberry wraps to my fingernails. Looking good. About 20 minutes to 11 and I’m ready to leave for church (5 miles away) and may even get there early for a change.
Last thing I do before I leave is be sure I have all vehicle keys. NOPE, truck keys are missing. I search for them, the counter, my purse, the pants I wore yesterday when I last had the keys. Not there. I wake my husband up, does he know where the keys are? He feigns innocence but by this time I’m pretty sure he has them somewhere. He is NOT allowed to drive and yet he wants to badly. I will NOT leave the house without both sets of keys in my possession because the last time I assumed I misplaced them he had them and went for a joyride.
I keep searching. His pants, his dresser drawers. Finally I find them in the drawer that I have NEVER and would NEVER put keys in. Of course he was hiding them. He still says he did not do it but of course he did.
By the time I find the keys it is 11:10 and I have missed church. I sit on my couch instead and pray for patience and kindness and gentleness and love. I pray for these things to overtake the anger and resentment and frustration. I better keep praying.
I am sorry I have dropped off the face of the planet for many months. But life gets in the way. In February my husband was given a service dog that has changed our lives a great deal. In March we attended the National Winter Sports Clinic for Disabled Veterans at Snowmass in Aspen, CO. In June we attended the National Veteran’s Wheelchair Games in Dallas, TX where he won a gold medal for Motorized Rally. In March his VA Claim was settled bumping him up to 100% and giving him additional payments for Aid and Attendence. They also declared him incompetent to manage his own money and we are still waiting for that to all play out. He was also approved for the Specially Adapted Housing Grant which has set a few other things into motion.
We decided that we don’t want to live in NY long term, and we are tired of winter. So we are getting our house ready to sell so that we can move to the Tampa Florida area. When I say “we” I of course mean me. I am getting our house ready to sell. We had all new floors installed and with a bit of paint touch up we are nearly ready to put the sign in the yard.
BUT – there is always a but we are now off to the New England Summer Sports Clinic in Providence, RI and then spending a week camping in Maine with my family. So it will be at least August before we can get that sign out there.
Chances of selling our house quickly are low because we are NOT willing to sell it cheap just to sell it. We need to find the right buyer, someone who will appreciate the view and the seclusion and the peace and quiet.
But even if it does not sell we are taking our camper and heading to warmer weather for this winter. This girl is tired of snow and sickness and cold.
So that is a quick and dirty update friends and I do aspire to write more often.
Sometimes I get frustrated and want to scream at his refusal to do things that are safe and correct. I know that doesn’t work though, I yell, he laughs, I yell more and he refuses with more vigor. So I stopped yelling. I stopped trying to MAKE him do the right thing. I just love him and choose my battles. The truck keys is a battle I cannot give in on. But I can say no with more love and less frustration.
Our trip to the SCI Unit was interesting, eye opening, helpful and sad. It seems that there is a lesion causing all of this, and it did not respond to IV steroids. It is likely caused by going off Tysabri and taking a drug holiday. It seems these changes are going to be fairly permanent as we are now 2 months in with very little improvement.
He is now fighting for his freedom at every turn. What does that look like – well it looks like him refusing to use his walker and instead ending up falling down many times a week. It means him dragging his butt up into his truck rather than use the very expensive turnout chair that the VA so graciously installed for us. It means hauling himself up the 4 steps in the garage rather than allowing me to push him up the beautiful new ramp to the front door. It means ignoring me when I am just trying to keep him safe. It means laughing in my face and not responding when I try to reason with him.
He is fighting for freedom and I am so frustrated I could SCREAM. Thankful I get a break this weekend as he is staying with the neighbors for 2 nights and I am going out of town for a movie shoot. It will be a roughing it kind of weekend in a cabin with heat but no running water. But it will be a weekend when I am only responsible for my own welfare and safety and no one will be defying me and fighting me at every turn.
I wish he could have his freedom back and I could let him be. But for his safety I can’t.
The turn out seat is installed in our truck and we are currently at a guest house for the night and will be checking into the SCI and MS clinic tomorrow morning at 9am. Tomorrow is sure to be a very long and tiring day for both of us.
Things that I’m hoping for and ASKING for:
- A lift – something to get him back up off the floor should he fall and be unable to assist me with getting back up
- Regular Physical Therapy in our home!
- Cognitive or Speech Therapy or both (he is still struggling to speak)
- Assistance getting his claim fast tracked in NYC at the Regional office.
I’m sure I’ll think of more things as we go along. So three days of HELP is coming up and I am so thankful just to be here. Also loving the guest house where we are staying tonight as they have a handicapped accessible room for us and a lovely guest home with TV for my addicted husband. And DINNER was provided too, I had buffalo chicken mac and cheese, he had some minestrone soup and bread. All for the bargain of $35 per night.
Small victories, today I had no urine soaked anything to clean up. Today I did not have to pick my husband up off the floor after yet another fall. Today we talked a little bit and we cuddled for awhile. Things are different for sure but laying in each others arms makes things feel a bit more normal and the bad a little easier to face.
Some things are starting to fall into place – We are going to an SCI clinic where he will get 3 days of assessment and help planning for the future and what that may mean for us. The wheelchair ramp is ordered and should be here in 3 weeks. They are also installing a seat similar to this to our truck so I can get him in and out of the truck much easier.
Still so much up in the air but after a series of very bad days it was nice to have one that was not horrible.
Today I found myself in the men’s room. TWICE. First time at the VA when my husband pulled the call button for help and a shrill alarm started sounding outside the door as well as flashing lights. I went in to check on him and we turned off the alarm, but it rang for nearly a minute. Sadly no one else showed up so those alarm buttons in the bathroom at the VA? Don’t expect much.
The second time we were at Outback for lunch. He insisted on walking in rather than me getting out his wheelchair. We get from the truck to our table (about a 15 minute excruciating process) and then he says he needs to go to the bathroom. Of course it is in the very far back of the restaurant and so he starts making his way there an inch at a time with his walker. I know this is not going to work and he is not going to make it. So I leave him moving at a snails pace toward the bathroom and go out to the truck where I retrieve the bag of extra clothes and his wheelchair that he should have been using.
Soon I find myself in the men’s room at Outback, on my hands and knees in the men’s handicapped stall helping him get his wet jeans, underwear and socks off. Helping him clean up and get clean underwear, socks and sweatpants on. While I am on my hands and knees in the bathroom stall someone else comes in. Once upon a time in another life I may have been a bit of a wild girl for a year or two, but this was definitely a first for me.
Even my husband had to laugh as I said “when you picture me on my knees in the men’s room I bet this was not what you had in mind…”
At least we can still find humor in this messed up life.
These days I am feeling more like his mother than his wife. I have to tell him to eat, serve him every meal. I have to do 2–3 loads of laundry daily. I have to remind him to use his walker, over and over and over. I have to help him shower and dress. I have to put my foot down when he is being ridiculously stubborn. I feel like I am chastising too much and yet these things are essential to his health and well being.
I am trying to find the balance, to speak kindly, to keep him in the loop on all that is going on with the doctors and appointments and assistance that I am requesting. I try to carry on like it is a discussion even though he cannot keep up his end and I know he won’t remember. I try to make him feel part of the decisions. I try to remember to be his wife and not his mother.
It is very hard sometimes.