Category Archives: Daily Living

Another New Normal

After a long recovery from his hip replacement surgery in May we were settling into our new normal.  This included 3 days a week home health aid to assist with showering and dressing and give me a chance to go to the store and run errands.  We were getting ready for a week of respite care for my husband at the VA and I was going to have a weeks vacation, time home alone to myself and a short trip away for 2 nights with my sister.  But the week before we were to go our washing machine broke.  So in order to get the laundry washed and get him packed for his week of respite I had to take the laundry out to be done, while I did this I left him home alone.  He was alone for 30-40 minutes while I ran the laundry to my mom’s and to a friends and loaded up their washers.  But while I was gone he fell again and broke the other hip.  So respite care became acute care for fractured pelvis.  And life has once again become hell.

In the meantime we came to realize our house was NOT going to sell unless we were willing to lose $30-40K in equity.  We are NOT, we CANNOT.  So, we took the house off the market and started the process to use our adaptive housing grant here in NY.  We need an accessible bathroom months ago and waiting years to sell or losing our shirts was no longer an option.  So sadly I have given up on my dream of living in Florida, near the beach, where it is warm, where my bones don’t hurt.  I am excited about the addition we are adding, a new massive master suite will be added to our home with a walk in closet (a dream) and in the HUGE bathroom a large, deep soaking tub for me.  We will have room for a King size bed and lots of room to get around in his power wheelchair once the doors are widened and the hallway widened as well.  It’s going to be a messy and annoying project, massive BUT in the end so worth it.

And as we settle into this new normal, he fights me all the time on safety issues.  Last week I had to change the doorknob going into the basement and add a keyed lock to it because he insists he is fine to walk down there. I fight with never leaving him alone.  I have to find friends to sit with him to get out for work 1 night a week.  I am thankful the VA pays for 10 hours of home health aid’s for him each week but they are in the AM and no help with work.

Life goes on.  Depression always looming, staring me in the face, keeping me awake at night, making me fall asleep during the day.  The constant struggle between what he wants to do and what is safe (he tells me at least once a week to give me his keys). Just sad to have to give up on one more dream but also glad to be staying where we have amazing friends and my family all around us.

Just taking time to adjust to this new normal, again.  MS is a cruel, cruel disease.

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Posted by on January 10, 2017 in Daily Living, Uncategorized


The streak is broken…

The streak being the sheer number of times that my husband has taken a tumble and NOT broken a bone is broken.  On May 4th while I left him alone for a few hours, he oh so wisely (sarcasm of course) decided to climb a ladder to look at some boxes in the rafters of the garage.  He fell, while standing on the 4th rung of the ladder he fell.  He landed on his hip and he broke it at the head of the femur.  The next day he had a total hip replacement surgery and started his very long and slow recovery.  That was 5 weeks ago today.  He moved from the hospital to a rehab center and has spent 4 weeks there doing PT and OT and getting better.  He comes home this Friday.

And once again life changes, no more leaving him home alone.


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Posted by on June 8, 2016 in Caregiving, Daily Living


Winter Sports Clinic

This was my husband’s 5th year attending the Winter Sports Clinic for Disabled Veterans and my 2nd year.  He loves it, held in Snowmass, CO each year it is truly an amazing event.  He gets to ski, curl, scuba in the pool, hang with other veterans and socialize.  It’s wonderful for him.  The first 3 times he went it was wonderful for me because I got to stay home alone.  But he can no longer travel without a caregiver so I have to go.  I know complaining about a trip to beautiful Colorado seems silly but it cost me about $2000 to go with him for 8 days and my body HATES high altitudes so I can’t breathe the whole time we are there.

Chip is my constant companion in CO, his love helps.


Pete enjoying the winter sports.

curling Pete

I hope once we get settled in Florida he can continue to participate in this clinic each year it’s sooo good for him.

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Posted by on April 23, 2016 in Caregiving, Daily Living


Long Overdue Update

So we did it – we were snowbirds from Dec 15 through March 15th.  We lived in approx 300 square feet of space, with two adults, 3 large dogs and one small cat.  Talk about Tiny House Living!!!!  But we had a good time, we moved around a bit.  During our travels we spent 2 weeks in Georgia, 2 months in two different places in Florida and about a week in the Carolina’s on the way home.

On the way down we spent two nights in Morristown, TN where I got to see my cousin that I hadn’t seen in at least 25 years. She loved my dogs and helped me walk them while we got the camper set up and then we all went to dinner!  🙂

We had a great campsite there in TN but it was raining the whole time so we didn’t spend much time outside.

We moved on after just two days to Georgia where we spent 11 days and had Christmas in the park with my mom and dad who were working and living there in their RV.  It was a bit strange having Christmas in the camper but I still had my decorations – this was my tree.  It reminds me of my grandmother and I painted it myself.  🙂

On January 1st we moved into a campsite that was a bit more crowded but was at a resort and had lots of amenities!

We spent all of January and February at two different resorts in Florida.  We found the town/city where we’d like to live once our house in NY sells.  We visited the VA in Tampa and got to check out their emergency room (not fun) and emergency dental as well!  We visited with family and friends.  We saw manatees, we went to Busch Gardens twice (flamingo encounter), we went to a spring training game, the dogs played in the dog park, we enjoyed sunsets over the bay, I swam, I played bingo, I LOVED it!  🙂

And after three long months I was very ready to leave the crowded camper behind:

And while I really miss the cheap gas in the south I am enjoying the space I have in my spacious home in NY.  Can’t wait to have a spacious home in FL instead.

And my husband?  He is ready to be a true Floridian.  This is him wearing long underwear and jeans, a shirt, sweatshirt and winter coat at Busch Gardens.  The outside temperature that day was 65.  Yep if it’s below 70 he’s freezing – he will fit right in with the natives.  🙂

So this was my winter in a nutshell!  Of course since we left NY it was the mildest winter in decades and they never had a single snowstorm that required plowing or shoveling the entire time we were gone.

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Posted by on April 23, 2016 in Caregiving, Daily Living


We’re still here and things are moving along.

I’m sorry my posts seem to come in spurts, it is how my life seems to work these days.

While I was missing many positive things happened for us.  I took the bull by the horns and MADE the VA get his fiduciary claim set up ASAP in September.  When our NSO from the DAV told me I just had to wait and that the VA does things at their own time and there was nothing to do about it, I was not willing to accept that so I sent an email to the undersecretary for benefits in Washington DC, yep went straight to the top. I had heard she was very responsive and lo and behold I emailed her on a Friday, I received a reply on a Wednesday that something would be done.  The following Friday we had a call from the Fiduciary Officer to set up an appt and two weeks later on a Monday he was at our house we were filling out paperwork and it was done!  And thankfully as a spouse being named fiduciary is super easy and I did not have to make any changes at all to anything.  It’s life as normal here for us.  🙂

With that being settled we are now free to get going with our plans for the winter!  WooHoo so we are leaving mid Dec and heading south.  We will be arriving back in NY mid March.  3 months in our camper, 2 months in Florida and a month of traveling to and from.  I’m sure there will be challenges BUT we will avoid the coldest two months of the year in NY and that will be a true blessing!   While we are there, a lot of work has to get done meetings with VA peeps, housing office, realtors, and contractors.  Our house is listed here in NY and hopefully will sell before the end of 2016 so we can get back to Florida permanently before next winter.

When we get back home in March we will have  just a few weeks to get ready for Pete’s Winter Sports Clinic trip.  And like I assumed, no one else is willing to step up to the challenge of watching Pete for a eight days and being totally responsible for him and his dog so I will be going to Aspen once again.  Our fundraising is going really well and I am socking away every penny I earn at my 8 hour a week job towards this trip as well.  Also working on funds for the Wheelchair Games in Salt Lake City in June.  Pete really enjoys these trips so much!!!!


Posted by on November 9, 2015 in Caregiving, Daily Living


Respite Care…

For my sanity I need to use the respite care that is available to me for my husband.  What all does this entail?  Well because he is part of the Spinal Cord Injury and Illness Center at the VA he is entitled to spend up to 30 days a year there in respite care.  This means I can drop him off and the nursing staff will take care of his meds, and his physical needs.  He will be fed three meals a day in the dining room.  A recreation therapist will work with him and other veterans during the days to prevent total boredom.  He will get time in physical and occupational therapy.  Any appts he needs can be taken care of while he’s there too.  And I get a break, my house all to myself.

They encourage me to use this service and until now I have not done this.  I should have.  He has been part of this clinic for almost a year now and I could have had a month off?  Why didn’t I do this?  I will be using this going forward. I plan to schedule one week each quarter to just unwind.  I hope to take at least one great beachy or tropical vacation with a friend or my sister during one of these visits.

I think I was afraid that his family would object, but after our camping trip last week and they saw just how bad he has become they have no complaints at all and understand why I need a break.

So I’m planning – will get him a MiFi so he can use his laptop as the VA in Syracuse has no open WiFi for patients.  Will send him with a stash of his favorite snacks.  Will send some DVD’s he can watch on his laptop as the cable there is not full of choices.  Hoping that the first one goes well so I can enjoy these breaks 4 times a year without guilt.

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Posted by on September 15, 2015 in Caregiving, Cognitive Loss, Daily Living, Dementia


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Living our life…

So following the theme of living our lives and not letting this disease stop us we took off two weeks ago with all three dogs and our cat for a long trip in our camper.  We traveled 4.5 hours the first night and slept in a Cracker Barrel parking lot.  No electric makes that interesting.  The battery provides enough power for lights and to run the water pump to flush the toilet, etc.  The fridge runs on propane BUT we realized when we stopped at midnight that the propane had run out.  DOH so a full fridge and freezer and it ended up being 10 hours before we got propane.  But it was okay.

The nice thing about the camper is you have a bathroom with you all the time, but there is not always a safe and efficacious place to stop and walk from the truck to the camper and get in to make this happen.  Day two had us pulled over in a cul-de-sac with our 35 foot camper and a clothing change caused by an accident.  People were home and likely wondering what on earth we were doing there.  I kept waiting for cops to show up but they didn’t and we got back on the road.

Finally checked in and set up at the first campground where we were spending 4 nights with my husbands sister and brother in law and his brother as well.  It was HOT, super HOT which is not so good for MS and the campground electrical was subpar so we kept losing power and browning out.  Not good when it’s in the 90’s and I have to leave 4 animals in a tin can all day.  Thankfully these power outages seemed to be only when we were there.  We also spent 2 days on the lake on a pontoon boat.  So much fun but so draining.  Husband was BEAT.

On Labor Day we moved on – pulled out around 2pm and had a 3 hour drive to our next destination.  Got in and got set up there by 6pm and then stayed for 7 days.  Was not nearly as hot and much more relaxing.  Hung out around campfires and went to bed early.  7 nights and not a single accident (WINNER WINNER) but to really test my patience the cat decided to pee on my bed.  Thankfully I have a waterproof cover (of course) so she did not ruin my bed.

After 12 full days living in the camper and a 10.5 hour drive home we arrived home last night.  I am happy to be here for sure.  BUT this trip helped me realize that a winter in Florida is not really out of the question.  The camper is comfortable and roomy and if I rearrange storage a bit we will have no issues.  So if the VA ever gets their head out of their A$$ and we get our current issue settled we can indeed manage Florida for Jan/Feb.


Posted by on September 15, 2015 in Caregiving, Daily Living, Dementia



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.


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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.


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


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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.

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


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