Monthly Archives: February 2019

Day 7

Is it already a week?

Had an appointment with the cardiologist for a six month check, didn’t dare cancel it because he’s always so solidly booked. Everyone was so kind when I told them about Jay. One nurse asked my I didn’t just cancel. I told her because I had no idea when I’d get another one if I had.

Got some frozen dinners to tide me over for a bit. Cooking is totally uninspired these days. My energy levels are quite low which surprises me. I just drag out some leftover from fridge or freezer and heat it in the microwave.

I eat because I know I must, or I’m hungry not because I want to eat.

Decided to try to be careful again since I gained back all I lost, I will try to start over logging my meals in on  of course with my luck tonight the site is down for maintenance.

Looks like we have a new nightly routine beginning with me dragging the ottoman over to my desk, putting her bed on it, she hops up and settles in until bed time.




Day 6

Puttered around the house.

Took his black powder rifle down from the wall, I couldn’t stand seeing it. Have hated it and the wall decor for the last 20 years but he wouldn’t let me touch it. Replaced it with:

Worked on getting his end table cleared and cleaned. I can’t tell you how much dust there was. All I know is how often I asked him, begged him to… “at least dust your end table.” I can see it never was priority.

Out of curiosity I checked my blood pressure this afternoon. 119/58 Hmmmm, best it has been in a long while.


black sphygmomanometer

Photo by Pixabay on

Day 5

Finally Monday.

Now I was able to begin making phone calls, notifications, cancellations, changes of pensions, one thing after another.

By the end of the day I had several appointments made to get paperwork done.

I have a ton of paperwork on its way to me and days of running around to do.

I just want it done.

I feel like I can’t breathe with it all ahead of me.

I want it behind me.

I need it over so the panic attacks don’t start. I can feel them sneaking around me waiting to pounce.

I need it over so I can run away from here. I have a waking nightmare every time I am on the stairs or look at the stairs, seeing him sail through the air and the expression on his face when I covered him at the bottom of the stairs, repeatedly telling him not to move while we waited for the ambulance.

If it weren’t for Lucy pestering the heck out of me I don’t what I’d do.



Day 4

Everyone tells me to give myself time.

Let me guide you through this life of mine the last several years…

Everything revolved around him.

Every minute of every day.

When I got away from the house it was to get things done I needed to do.

The only pleasure I got out of it was taking G to lunch those days where we could talk and I could be anything other than his caregiver.

Of course some of those days I’d get home to find him on the floor unable to get back up into his chair or bed.

It was no fun for him to be that way. He’d cuss at me for not being home…gee, I did have to buy groceries once in a while.

I gave back as well as I got. Some days all we did was yell at each other or say nothing.

The last 4 years or more I’ve slept on the couch because I couldn’t hear him fall if I was in my bed.

We quit sleeping in the same room many years ago because his MS made his legs jump so bad I’d wake up bruised and exhausted from him kicking me all night. He saw I was not getting any sleep and moved to the next room.

That worked fine until he began to fall all the time.

I began to sleep on the couch so I could hear him if he fell…I turned into a light sleeper. Someone who slept soundly maybe an hour of each night. I had nightmares too, nightmares that somehow predicted how he’d go. Every time, the nightmare was of him falling down those damned steps.

The horror of it all came into focus Sunday the 17th when he fell down the stairs and scared me to death. This was his second time falling down the stairs, but this was the worst fall.

I called 911 and I’ve never seen the ambulance get here so fast before. They knew by my voice it was bad.

So here I am. I will always love him even though there were times lately that I didn’t like him much. I’m sure he felt the same way about me.

But here’s what you need to understand, I’ve had time. I’ve had years to think about what I’d do when he died. We knew he’d go first. We talked about what I would do. We talked about what he wanted me to do. He knew.

He’s taking his journey.

Now I begin again with his blessings.


Day 3

I am amazed at how well I’ve been sleeping. I thought I’d have a lot of trouble falling to sleep and staying asleep.

I attribute that to the fact that I am no longer listening for him to fall.

I know he’s not there, he’s not going to fall, thus all that light sleeping I’ve done for all these years has immediately slipped into *you could set a bomb off next to my head and I won’t wake* sleep.

Although a little after 9 each morning Lucy decides she must go out. We do crawl back into bed (still on the couch) and stay there until my alarm goes off at 10.

Went next door for a little while last night they invited me over for wine and cake to celebrate the daughter’s birthday. Everyone was so sweet. I enjoyed all the hugs I got the best.

Can’t help it, I’ve always been a hugger.



Day 2


Taking stock…

Desperately looking for a notebook…This from a woman who has oodles of them but can’t find a one spiral bound note book to save my life.

I need to get some lists made on who I must call in the upcoming week. Can’t do anything this weekend.

The flowers have begun…I have no place to put them…

Please, just donate to the MS society in his name.

Funny, no one has signed his guest book online. *Shrug*


Day 1

Rick took me over to the funeral home.

Arrangements were made according to Jay’s wishes. No service. I will hold a wake for his friends at a later date.

I wish to thank everyone for putting up with me and showering me with love and kindness.

He’s gone

He slipped away peacefully this afternoon, it feels strange knowing he’s gone. Knowing he’s not coming home again.

I’ve not been without him for almost 46 years.

It’s an odd feeling.


To look at his body there in the hospital bed–it was like looking at a stranger.

An empty husk.

The words ringing in my ears…”I’m so sorry, he’s gone.”

Rick being there with him, with me, I wasn’t completely alone in this. His grief is raw in him. I’m several steps ahead.

The five stages of grief, denial, anger, bargaining, depression and acceptance.

I went past denial years ago, we’ve dealt with his MS since 1989.

The last several years I hit anger I was angry at the disease and angry at him for treating me like his house slave. The lying to me about how he did his exercises, the need of his pills more than me. The fact that he hadn’t bothered to hug me once in the last 4 years. (I’m a hugger, that was excruciating.)

Bargaining? I’d bargain with the devil himself if he’d brought back the man I once  knew to me.  I know that will never happen, never could happen, so I’m past that.

Depression…daily …watching him falter, listening to him moan and groan in pain, trying to understand him when his speech slurred.

Today he died.

I accept that death. I know he’s no longer in pain, weak, needing constant help, embarrassed, angry, or wondering what next.

All through it all, everything, no matter how much I bitched about it, I loved him. I still love him. I will always love him. You can’t spend over 46 years of your life with someone and not have them have a huge impact on your life.

Thank you, everyone, for putting up with me, for holding me in your hearts, for being there.

Tomorrow I move forward on a new journey. One I didn’t want to take.

Hey, if you want to make a fortune…buy stock in tissues…I’m going through tons.

Jay in uniform (3)


Ever deepening well

The well of tears is deep and never seems to go dry for long.

Every time the phone rings I cringe. I don’t want to know.

I think I’ve calmed down, stopped crying, am able to somewhat function…and then it begins all over again.

In desperation I try to distract myself by reading, playing computer games, cleaning, anything but TV, I can’t bear having the TV on.

Lots of snow falling.

No one to talk to–usually that doesn’t bother me.

It bothers me.

I have never felt so alone.

My heart feels heavy.




Life unbalanced

So G and I went in to see The Curmudgeon this afternoon. Seeing him so non-responsive threw us both for a loop.

I signed a bunch of papers to put him in hospice care. It is what he’d want.

He’s a DNR by his own wishes. I gave them a copy of his living will–mine is identical.

Several years ago, we had our wills done and did our living wills at the same time.

It is NEVER too soon to do a living will. If you haven’t done one, you need to. All it does is state your wishes as to what should be done should you be unable to let people know what you want done for you.

The weather is supposed to be quite nasty tomorrow so I will not be going to see him.


Not a good day all round.

I have had to give the hospital 4 copies of his medication list,  2 copies of his insurance cards,  and 3 copies of his living will since they ‘misplaced’ them that many times so far.

They’ve been told 6 times by me that he is a DNR. He’s told them the same thing at least that many times.

Lehigh Valley Hospital  you really need to get your act together. For such a HUGE place you’d think you could at least have your paperwork together.

This does not show the entire facility….plus they have construction going on all over the place.


So the hospital called, he’s not doing well. He’s now in Hospice care.

I went out to fill out more paper work.

He looks horrible and is non responsive.



I’m not an awful person I am just over-tired and completely stressed.

The new gate for the stairs arrived today–I love Amazon! I have it installed and the old bent to shit one is out on the porch waiting for Thursday’s trash pick up.

The living room is mostly vacuumed and dusted and I am making inroads in the kitchen and my bedroom.

I’ve had one call after another today starting at 8 a.m. (2 hours before my alarm goes off.) Needless to say I was barely coherent or civil to the whatever the hell she was from the hospital. I made sure she put do not call wife before 10 a.m. on his chart.

A doctor (neurologist?) called about 10 or so.

A rehab facility called around 1.

Another one called around 2.

I told each of them I am tired of dealing with his stubbornness, they can talk it all over with him, when he makes a decision, they can let me know…