RSS

Category Archives: Daily Living

Patience

I am not a patient person.  At least I don’t feel like a patient person.  I have always been one for instant gratification, I want it and I want it now?  Why save for it when you can put it on a credit card and pay it off WHILE you enjoy it?  I have, over the years, learned a bit more patience when it comes to financial matters.  I use credit sparingly and even then I plan carefully to use 0% interest specials and be sure to pay off before the expiration date on the offer.  I am patient and kind with my animals. I love them to the moon and back just like you love your children.

But with my husband?  I feel like I am lacking patience.  Because he has the reasoning ability of a 5 year old he is frustrating to talk to.  He struggles to speak at times BUT I hear him on the phone with his sister and he’s chatting away then he refuses to speak to me. I ask questions and they are answered with hand waves, facial expressions and grunts.  I tell him he has to use WORDS and he just clams right up and refuses to answer.  I try to reason with him which is of course futile (have you tried to reason with a 5 year old?) but I look at a full grown man sitting in front of me, my husband, a man that used to be decisive and authoritative and never one to mince words.  I wish I could just see him as he is now but who he used to be so clouds my vision it’s hard to comprehend.  So I argue with him, I threaten him, and through it all he refuses to talk to me, will not fight back and just laughs, and laughs and laughs.

The laughing is part of the dementia (lability or pseudo bulbar affect? take your pick) but it still has the ability to infuriate me. And in those moments I find myself praying for patience.  That is a dangerous thing because truly learning patience comes through some very difficult situations.  But I’m already there and I need the patience to stop the anger.

Love is patient, Love is kind.  I do love him and I want to be patient and kind I really really do.  I pray daily for patience, kindness, gentleness and LOVE.

Part of my efforts to change the dynamic come with hugs, daily hugs. An effort to reconnect and remember that love we used to have.  He resists sometimes and then it’s just a quick hug and I tell him I love him (he never says this anymore) but other days he leans in and we both get a real hug.  It makes me miss him more but it reminds me of the LOVE that brought me here in the first place.

I am still not a patient person, but I am more patient than I used to be and I pray that each day I become more patient than the day before.

 

Tags: , , , ,

Falling over the edge…

The thing about this disease is that it is all consuming.  For my husband it has taken every part of his life and turned it upside down.  He is no longer the same person he was not even close.  What people don’t seem to realize is that it is doing that to me too.  From strong career woman to washer woman, enforcer, meanie.

He tells me I am mean almost every day. Why?  Because I try to keep him safe.

“Give me my keys!” he says “I’m not asking you I’m telling you!” he says.  I have to say NO and mean it and he hates me for it.

The other day my uncle sent me a photo of my great grandmother.  I showed it to him, he says “you don’t look like her at all” so I tell him that people say I act like her, his reply “so she was a bitch too?”  Yep that hurts.

I feel like I let friends down and that they really do not understand how caregiving has consumed my whole life.  I had promised to loan my camera to a friend for Sunday and was supposed to drop it off Saturday night.  I remembered on Sunday when I was already too far away to do anything about it.  She wanted it for a large event, and so she had no camera and had to rely on others for photos.  I feel bad and sent her an apology text on Sunday when I realized what I had done.  It’s Wednesday there has been no reply.  I’m sure she feels I let her down.  But I’d love for her to spend a day in my shoes and see the things that are consuming my mind daily and realize how easy it would be to let something like that slip and that it doesn’t mean I don’t value her as a friend or that I don’t think her event was important.  I do know it was important, I know she felt let down, and now I feel like I may have lost a friend over something stupid really.  I lost track of time on Saturday as I was dealing with so many things at once, dinner, dogs, friends, getting ready for Sunday’s road trip and just battling my usual depression and lack of motivation.

September 6-7 2014 is when this disease took a huge jump forward.  From the outside my life looks the same to most people but no one seems to understand that it’s not at all the same.  My husband has the judgement of a 4 year old.  Everytime I leave him alone for any length of time it is a gamble.  In 30 minutes he nearly burned our camper down, what could he do with 4-5 hours while I go to work?

I am working on getting support lined up for my overnight trips I have to go on this fall.  Thankfully my sister and her husband are trained caregivers for adults with special needs.  And since I have provided countless hours and days of absolutely FREE babysitting for their children I called in the favors and my brother in law will stay with and manage my husband in my absence.

Still not sure what to do about my apparently pissed off friend.  All I really want to do is go back to bed and sleep for a few more days.

 
2 Comments

Posted by on August 19, 2015 in Daily Living, Dementia

 

Tags: , , , , , ,

One more thing…

So yesterday at a meeting of Pete’s Adaptive Sports Team they broke the news that funds are tighter than in previous years.  They are not sure that they will be able to fully fund everyone who wants to go and that unlike last year there is not likely to be funds for caregivers.  BUT because Pete now receives Aid and Attendance he is not able to travel alone (not like I would let him go alone anyway but even if I was contemplating that they could not allow it.)

So what does this mean?  It means that if Pete wants to attend the National Winter Sports Clinic for Disabled Veterans in Snowmass, CO in April that we will have to come up with airfare, hotel and meal ticket money for a caregiver.  And likewise if he would like to attend the National Veterans Wheelchair Games in Salt Lake City in June we will again have to come up with airfare and hotel money for a caregiver.

I say “a caregiver” because it does not have to be me.  I am hopeful that his sister may agree to travel with him and take on the challenge in April.  And if she does agree she should not also have to foot the astronomical bill to go and I would never ask that of her.

So finally I’m getting around to my point, I have started a gofundme account to raise travel funds for a caregiver to attend these events with Pete.  It will likely be me because others don’t want the responsibility BUT I am still hopeful it won’t always be me. (a girl can dream)

Please do take a look and donate or share if you’d be so inclined.

http://www.gofundme.com/TravelwithPete

 
Leave a comment

Posted by on August 14, 2015 in Daily Living, Dementia

 

Tags: , , ,

YES this is my circus…

image

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.

 
1 Comment

Posted by on August 12, 2015 in Daily Living, Dementia

 

Tags: , , ,

Up in Flames

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.

 

 
2 Comments

Posted by on August 12, 2015 in Cognitive Loss, Daily Living, Dementia

 

Tags: , ,

Just another day in paradise…

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.

 
3 Comments

Posted by on July 19, 2015 in Cognitive Loss, Daily Living

 

Life Gets in the Way

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.

 
2 Comments

Posted by on July 19, 2015 in Daily Living