Tuesday, April 7, 2020

GRIEF - ONE SIZE NEVER FITS ALL

Much has been studied and reported about grief.  We have all heard about the stages of grief and the requirement that one has to go through them to go forward emotionally.  The most frequent  statement is that we must express our grief or it can't be put to rest.

It is four months ago today that my husband died.  He was hospitalized for 22 days.  He went through a complete round of chemo during that time.  He struggled physically and emotionally.  He would say to the Palliative Care team that he looked at the disease as a "blessing - a new beginning".  He never talked that way.  The entire family engaged in eye rolling over that one.  But generally he was himself to the day he died.  Difficult, demanding, hard working, sentimental, loving.

I loved my husband of 35 years.  Our relationship was interdependent in many ways.  I am a nurturer by nature. As a lonely only child he sopped up all that I did for him with gratitude. He was my protector, provider and companion.  We have 3 amazing children.  We - all five of us - are independent people.  We agreed to let him go when it was clear he was not going to recover, we were at his bedside when he breathed his last breath.  We told stories and laughed and none of us thought he would go as quickly as he did because it was his way to put up a fight and drag things out.

I did not cry then - and have shed very few tears since.  We went home and started getting things organized the next day.  I did not take to my bed.  I did not feel that there was no reason to go on, or that my life was over. I recognized that my life had completely changed - but that I am still my whole self.

After the initial shock had worn off and many tasks had been taken care of and things around his death had slowed a bit - I started to wonder if there was something wrong with me.  I didn't feel I was denying any of my emotions but I wasn't distraught.  I felt pretty secure in the decisions I was making.  When I felt overwhelmed by things I took a step back.  I engaged in self care - went for walks, made sure I ate well. But still I wondered if I was "normal."

I went online and looked at information about grief.  I don't think I am repressing things - Brene Brown would say I was not being authentic, that I was denying my negative emotions and that suppression would bring more suffering.  I don't think so.  I am not denying who I truly am.  I am not fearful of being unlovable.

I had and still sometimes have a lot of anger toward my husband for the financial situation he left me in - but I also recognized immediately that he suffered knowing what was coming for me and I have, as best I can, forgiven him for it.  So I explored if that combination of being sad and mad was something others had experienced - and there is a bit out there about similar situations - but mostly it goes back to the "stages of grief" kind of anger.  So I was satisfied with the general sentiment that not everyone grieves the same way, on the same timeline - one size doesn't fit all understanding of grief.

Then I ran across some newer studies about resilience.   I am nothing if not resilient.  The Mrs. Brightside moniker is all about that. For me it isn't about glossing over or denying the negative - it is about finding your way through by focusing on what is possible, the positive, the light.

George Bonanno's studies and book The Other Side of Sadness: What the New Science of Bereavement Tells About Life After Loss  is about "studies which followed bereaved people over long periods of time we always found tremendous variability in how people react to loss. We found a pattern we call "resilience" in between one third and two thirds of bereaved people. It looks like the term suggests. People who show a resilient outcome struggle initially with the pain of loss, as almost everyone does, but they manage to deal with the sadness and distress with equanimity. Their pain is acute, usually lasting most pointedly for a few days to a few weeks but then begins to subside. It is not that they don't grieve, or that they didn't care; far from it. Rather, they are able to put the pain aside when they need to and they continue to meet the demands of their life. They even laugh and experience moments of joy. They accept the loss, readjust their sense of what is, and move on."

I don't report this as in "I am of superior mental health" than people who are traumatized and grieve for years and years.  I am well aware that sudden, violent loss or the loss of a child is much different and creates more of a PTSD response.  I am just comforted by the approach that lets me know I am not a cold, unfeeling or suppressed person for experiencing my grief in my way.

Wednesday, March 25, 2020

TRIGGERS

I have not experienced grief in a go to bed for days, weepy, can't cope way.  I moved into the what needs to be done zone and stayed there for weeks - to the point that I wondered what was wrong with me.  Am I normal?  I loved my husband, he died.  Shouldn't I fall apart at least a little bit? 

Then a cascade of problems started to set in - and I found I was fine putting out fires but unable to cope with simple things.  A notice from the bank that required me to change my log-in just threw me - I couldn't think of something new.  The woman on the phone nicely came up with something until I could think straight. A CPA I called for advice told me what killed him probably was the financial stress he was under and I hung up on her but was so shaken up I didn't make phone calls for days.  Paperwork for the new bank account I opened had to be corrected because I put in that I was married.

Driving through the city where we used to live brought on tears.  Seeing people out on their bikes brought waves of memories. Passing by things I used to buy for him at the store made me sadder than planning meals for one.

After moving to a new state, I have not had many of those moments, until today.  I went to donate
blood - which is the thing I told people to do when they asked how they could help following his diagnosis and death.  I  didn't really give it much thought until I saw all the people there doing this generous life giving thing.  I had gone prompted by the Covid crisis, but realized once there that the hospitals are still full of leukemia patients in need of this precious resource only we can provide.

I had strong mixed emotions all day.  The loss. The life sustaining gift we can  give. 

Sunday, March 22, 2020

THE REVEAL

Tom and I had certainly not foreseen that this would happen so soon in our lives - we expected a good 10 years before major health issues might occur.  We lived a healthy lifestyle and had no medical issues.  We had, however, spent time discussing things like quality of life and how far we would or would not allow medical intervention for each other.

I served as his advocate and was respected by the medical staff in that role.  His mental capacity was compromised and he had trouble speaking on and off during his hospitalization.  When he was lucid and could communicate well, he had many things he felt strongly about telling me.  He was extremely focused on his work, he made sure his clients had been taken care of.  He repeatedly told me about financial stuff like passwords and when bills were due that he handled. Even when he was delirious or sleepy, he insisted on holding his phone and having his blue tooth in his ear - during the nights I would wake up to him talking away as if he was conducting business.

It was clear to the family that in the last days he was asking for our help, asking to be let go. Things had deteriorated so significantly that much of his day was spent undergoing care that was painful and intrusive and not creating any gains.  We were all in agreement about stopping treatment and the staff handled the end very well with great respect and consideration.  He knew we were all there and the last word he said was "love".

The entire family retreated to our house to sleep.  In the morning we started making lists of things that needed to be done - divided it up and got to work.  We are a family of "doers".  Each of us in our own state of shock/grief/bewilderment we set about our tasks.  As the day went on, it became clear that there was a big problem.  I knew that I would not be able to afford the big house we had just rented, but the financial situation was significantly more dire than I had ever imagined. 

He would be very angry that I am even revealing this to others, but I think it is very important not to gloss over things - not just because this is the grim reality of my life now, but because it should serve as a warning.  I am not one of those old fashioned women who left everything up to my spouse.  I knew we had tax debt because I signed the taxes and payment plans every year.  I argued with him about his refusal to pay his quarterly estimated taxes as a self employed person.  He always argued back that if he had bad months back to back he might not be able to pay the rent or his bills to keep his practice going.  I know he lived in constant stress about his business month to month. 

Going through the finances, notifying creditors of his death, determining what accounts had to be paid or closed was significantly aided by the fact that he had created a comprehensive list with all his accounts and passwords.  What going through that revealed was gut wrenching.  Long story short (sorry, I guess this is not so short) he had massive consumer debt in his name that I did not know about and he had gotten behind on the tax payment plans and the IRS was after us. Big time.

Not only is finding I would have to deal with all this another kick in the gut, the kids were all exposed to this information and, quite frankly, we are all really pissed off about it.  Yes, he had no idea he was going to get sick and die.  Yes, he clearly was upset and obsessed with this throughout his illness and confinement in the hospital. Yes, he was trying to shield me with the belief he was somehow going to get it taken care of over time - but he didn't end up with time. 

I feel such pain knowing how worried he was all during his illness, he knew this hammer was out there and if he didn't survive it was going to come down on me. 

On the other hand - REALLY?  Keeping all this from me for years? Not being honest?  Pretending like we could actually purchase a house again?  Agreeing I could retire?

This reveal was only the beginning - much more to follow.


Sunday, March 15, 2020

I'M STILL MRS. BRIGHTSIDE

The last time I posted I was getting back into the swing of things after getting 2 new knees.  For the record, that has continued to be a great improvement in my life.  My husband Tom and I increased our mileage on our bikes and though I never managed to become a great hill climber - with the addition of an electric wheel on one of my bikes, we joined a biking group and took many wonderful rides.

So what brings me back to writing here? I always thought I'd get back to writing when I  stopped working full time - but my life has taken a wholly unexpected turn. I was trying to figure out how to update my profile with my new information. (Still can't figure out how.)  I considered starting a whole new blog.  Anyway...

We had just moved into a different house, both of us were exhausted from the effort. That Tom was tired and sore was a surprise because he's in such great shape, but not too worrisome - after all we are in our mid-sixties.

A couple of weeks later, on the last day of my job, my husband called an ambulance and got himself to the ER.  I left my retirement party and by the time I got to the hospital, the blood draw they had done was already conclusive that he had leukemia - so acute that they were pretty stunned he'd been upright for the past few days.

 Long story short - he was transferred to a hospital in Oakland where they specialized in treating AML. He started chemo a couple of days later.   It was 22 days from the diagnosis to the day we let him go due to multiple organ failure.  The chemo had worked, but his body was not up to the side effects.

I will save many of the stories and information I learned for future posts. Pretty much living in the hospital for 3 weeks, gathering, dispersing and then gathering the family again,  working with the doctors, nurses and Palliative Care team was all consuming in addition to his needs and demands and frustrations.  In many ways I shut down my emotions and here I am three months later and only now just starting to get my feelings back.  And I will tell you - they are a real mixed bag.

I will be writing with some frequency to express my feelings, thoughts and experience on this most unexpected turn in my life.




Thursday, May 17, 2018

FOUR FULL MONTHS TKR POST OP

I wasn't sure a couple of weeks ago that I was still making progress, but as has been the trend, as soon as I doubt, I turn a corner.

I am still leaving work a bit early to get in some extra PT time every day.  To be honest, though, I frequently use the time to do errands and just escape that last boring hour of work that feels like it lasts 2 hours!  I still experience enough stiffness by the end of the day that I am taking  my PT seriously most days.  Honest.

I realized about a week ago that when I get out of bed in the morning, I hardly notice my knees - I am back to my lower back being more of a bother than my knees. Hurrah?  By the time I am up and around for awhile I tend to get a bit stiff, so I do a few stretches before I leave for work.

 I started parking up the hill in my usual spot and have given up the luxury of the handicap spot right in front of the building.  I am fine on the hill and the extra walking is good before and after a day of sitting. I am also getting in and out of my car with much more ease.

The biggest issue I have had is a bad tooth infection in a molar I had a root canal in a year ago - I experienced several days of significant pain, stiffness and general feelings of being unwell until the antibiotic kicked in.  Those admonitions about oral health are not to be taken lightly. The infection did not travel to my knees, but they were definitely impacted.

Monday, April 30, 2018

FIFTEEN WEEKS POST TKR - GETTING SOME SLEEP

I am happy to report that I am finally getting some sleep - the medication has been helping a lot.  Not every night, but most nights I am getting at least 6 hours of sleep. I would prefer 7 1/2  so I am taking the meds a bit earlier each night.  The medication I am taking is called Gabapentin.  I still have tender and sensitive incisions, but the sharper nerve spikes have diminished and I am not waking after I am asleep - at least not due to the healing incisions.

I am still leaving work a bit early to do my PT every day.  It really helps to do this - I feel so much stronger and more flexible each week.  I am able to get up and walk around enough at work that I experience much less stiffness, also my walking has improved a lot, hardly any "hitch" in my gait.

I spent several hours on my feet at an event this weekend and rode 10 miles on my bike the next day. I was tired and sore each day, but I think I need to push myself in order to build my strength back.  Besides - before the new knees I could not have stood and walked as much as I did!  I could, however, put many more miles in on the bike - so I have more work to do. I am 10 days away from 4 months post-op.  I think I am still doing really well. Yay.


Wednesday, April 18, 2018

TRIED FULL TIME AND BACKED OFF

My plan was always to build up my work hours back to full time by 12 weeks - and I did.  Now I am backing off.  Only by one hour a day, but this is why:  I leave for work at 7:15 am and get home around 5:15 pm.  I am the "chief cook and bottle washer" as they used to say - so by the time I get home I am straight into  the kitchen getting dinner together, then cleaning up then I am too tired to do a real PT work out.

I tried full time for over a week and found not only was I tired at work all day, I felt like my knees were getting stiffer as the week went on.  I am lucky that my manager was totally behind me reducing back my hours to keep the healing process going forward.  I have had 2 days of a better work out and time on the bike - so I hope this is a good move.

I have a good friend who is a neurologist - I mentioned this issue of incision tenderness and sleeplessness to her, not in hopes of a diagnosis but because we both, as many older women I know, have issues with getting good sleep.  Anyway...she immediately suggested I contact my doc about a prescription which helps with nerve pain and has the side effect of drowsiness.  Started it last night and it didn't make me sleepy.  But I will keep trying it for a while and report the name of the drug if it seems helpful with this particular set of issues (in case there is someone else experiencing them.)

One more piece of news is that I rode a bike OUTSIDE last weekend!  A short ride - a few miles - but I felt it in my quads just above the knees. Even the little rises were a challenge after a stationary bike for 3 months!  The weather is supposed to be great this coming weekend so I am very excited to go out again.  I even wore my bike shorts and let the world see my scars!

So that's the story week 13.


Tuesday, March 27, 2018

BACK TO WORK - 10 WEEKS POST SURGERY

I survived my first two weeks back at work - weeks 8 and 9 I worked between 3.5 and 5 hours per day.  My job keeps me on a chair, wearing a headset in front of a computer.  I managed very well with taking breaks to stretch my legs and use ice during a break. Put a box under my desk to change my leg position now and then.

I was stiff when I got home - about a 20 minute drive which is hard on the right leg - and usually did an immediate PT session followed by ice, then another one before dinner.  I found I was very tired and in bed early each night.  I am still using Tylenol and Advil  and, though I keep trying to skip it, still using the Percocet at bedtime - hopefully I'll be off that in the next week or so.

The only other complaint I have is continued incision pain/discomfort.  The incision is healing really well and looks good but by the end of the day is so tender and sensitive I frequently go to bed early so I can leave my knees exposed - no clothing,  sheet or nightgown touching them! Have not read about anyone else having this issue...

This week, week 10, I am up to 5.5 hours per day (at work 6 hours due to required lunch break) and plan to increase to 7 hours next week and back to full time on my 12th week following surgery.

 My surgeon thought this was ambitious but I am feeling good, I still have time for at least 2 sessions of stretching and strengthening.  I was concerned during week 9 because my right leg was not showing the same improvement and strength as my left, but it suddenly kicked in, they are getting more equal and my gait is much improved.  I still get more stiffness in the right knee and work it harder during my PT sessions.

 I am only up to about 20-25 minutes a session on the exercise bike - I do feel more pain following the longer sessions so I am trying not to cause a backwards slide - tho I really feel good when I am on the bike!!


Monday, March 12, 2018

STARTING BACK TO WORK

I graduated from physical therapy last week about the time I got a paycheck for $54.00.  Time to go back to work so I don't owe them money for my benefits!

Over a week ago, I achieved a flexibility level of 126 on both knees - had no issues from the start with getting to 0 on my straight legs. I have some wobbliness and weakness on my right knee that I am working on strengthening for, but I was the first of my PT group to "graduate".

 I spent my last few sessions working on things like balance, climbing stairs and the hardest for me - getting on and off a regular chair without pushing off with my arms.  Ouch.  (I admit my biggest fear is getting stuck on a low public toilet and not being able to get up!) I had to put my fear of the pain behind me and after a few practice tries at standing up from the low chair in the gym - I could do it pretty well and it got less painful as I went. 

I also started driving during week 7. Freedom!!!  Though I wouldn't want to try to drive very long or far at this point! That driving leg is my weaker one and it gets stiff when I am in stop and go traffic.

At my appointment with the surgeon I asked for a letter to return to work on a limited basis and was given permission so long as I keep in mind this is still "early days" as he put it. So I started last Friday for just 3.5 hours with 1  break to ice and a few stretching out walks around the office.  I went again today for the same amount of time and might try for 4 hours tomorrow. 

Not sure if there was a betting pool on the likelihood of my returning at 8 weeks - but there were some very surprised people...also very welcoming people.  Nice to be out of the house for a few hours a day, then home to do my PT and rest.

Normal here we come.

HOPEFULLY HELPFUL TIPS FOR TKR PREPARATION

I did a lot in preparation for surgery and for the post op period at home.  I have a few hints that I thought I would share,  Having had both knees replaced, I am in a slightly different position in terms of functionality and recovery, but these things may turn out to be helpful for any TKR patient,

Having some help keeping track of paperwork, post op instructions and pharmaceuticals is a big
help.  My future DIL is a nurse and she actually created a daily chart for me to track all the things we needed to deal with daily.  I could check off the timing of my meds, supplements, water intake, activity, use of ice machines, etc.  Plus keep notes of any issues for follow up.  I am still using it to keep track of my pain and inflammation doses during the day - it can be a challenge to keep track and remember the timing as it can change day to day.

FYI - For those who might be bariatric patients or who take a lot of nutritional supplements - take care with adding vitamin K when taking blood thinners in the first couple of weeks following surgery - check with your physician on this.

Mine is labeled TheraBand
Initially I spent a lot of time in bed - it was more comfortable and close to the bathroom. I recommend having as large a bedside table as possible!  There were a lot of things on it - water bottle, usually a tea cup, meds, phone, TV remote, clock,log book and pen, etc.  I also liked having a chapstick, some gum, a book and hand lotion.  Think about he little things that give you pleasure and make you feel pampered when you are in pain and can't shower with the frequency you would like! This is really just for the first week or so - but FYI.

Having a strap around has been invaluable.  Mine is a stretchy one, but a static one like those used in yoga works, too. I used it to leverage my legs on and off my bed and sofa and now use it several times a day for my PT exercises.

I love my ice machines!  A great tip is to freeze water bottles and use them instead of ice cubes - not as messy, easy to carry to and from whatever room you are using the ice machine in.

I was unable to sit at a table to use a computer for about a month or so - and I could not tolerate a laptop on my lap as my legs were too tender - so a TV tray, breakfast tray or other sort of lap desk would have been great for meals and for computer use.

We put our  family room leather sofa up on bed risers to make it easier for me to get up and down.  Very helpful when you want to use furniture without arms to leverage up and down. With two knees out of commission - I had to have someone lift me up before we got the risers - afterwards I could do it by myself.   Eight weeks later and the risers are still there!  Might as well have some things easier.

Hope these ideas are helpful - going into this surgery there is not a lot of info on recovery - I was lucky I had help and some of these items on hand!