It's 2 AM and all is not well...

 It is almost 2 AM and I am sitting here on the computer.   On the day bed next to me, Pam lays quietly asleep.  She is dressed in my bathrobe, as hers was soiled in the bathroom.  I awoke at 1 AM to the TV playing in the living room.  Pam was in the recliner staring at the TV as Netflix played the splash page for each of its programs.... over and over.  She had not yet gone to bed.  Claiming that she was not tired.  I warmed up a blueberry muffin that I made yesterday and set it on the table.  "I said that I wanted oatmeal"  was the response.  Well, no you didn't but, oatmeal coming right up.  As we sat at the table eating our muffins, you began complaining about gas and abdominal pain.  On your third trip to the bathroom, you cracked the door open and asked for a Depends.  I grabbed four, one for now and three for the cabinet.  The exhaust fan is still running, trying to clear the air.

But in a fashion, help is on its way.  We are about to start bringing in some in-home care.   Everything is in place to bring in three four-hour shifts of personal care each week.   The last step for me is to catch Pam on a good day and explain it well enough that she will sign the agreement and the final step is the in-home assessment of both Pam and the living environment (condo).  I have chosen Home Instead.  They have good reviews and I couldn't really find anything negative.  We will start with three four-hour afternoons a week.

But I am still struggling with how spending all of this money is going to benefit Pam.  She is still pretty good with her ADL's like potty, showers, dressing, etc.  She is starting to need more help, but remains fiercely independent.  I know that I should not overthink this.  But given that Pam is either sleeping or watching TV most of the time,  there is only so much companionship and personal care that can happen.  And I am not interested in paying $35 an hour for housekeeping.  That just has little value to me.  I am hoping that they can get Pam up and doing something.   Maybe they can get her to do her PT homework.  She was strongly opposed to adult daycare and she has no real hobbies or activities since we left the farm in Maine.

And I do understand that one of the major benefits of this is to relieve me of some of the load and stress of being the primary caregiver.  It is supposed to allow me to go off and do some other things.  Yea, what other things are those?  And can I really go off and do something else without worrying about just how is Pam doing.  I have a bunch of projects around the condo that need to be done, but most can get done while she is sleeping.  

As for Pam, I continue to see a decline in both her cognitive and  physical abilities.  She is talking in her sleep more lately.  When I wake her to check on her, she is speaking gibberish.  She is also much more disoriented when she first wakes up.  I have also seen more indications of memory loss.  After spending a week in the RV, we moved to an FMCA rally for a few days.  On return to our seasonal site, she had no recollection of having been there.  Today, I asked her if she was hungry and I named off a few things she likes to eat.  About 20 minutes later, she was standing there with her fork and looking for her Ramon noodles.    But while she rejected that as a choice, she has no recollection of that 20 minutes later.    Getting up off the couch or out of the recliner is getting difficult without help.  And I see a definite change in her speech.  Her voice sounds weaker and her pronunciation is faltering.

We recently returned to pain management about her back pain.  On the last visit she received six steroid injections in her lower back.  But they were not effective in reducing the pain, so she took a pass on six more.  I asked the doc if a back brace might be helpful.  He was enthusiast about the idea.  So thanks to Amazon, it was here the next day.  Speaking of the next day, that is probably when I will be able to go back to bed.

It Breaks My Heart to See You Struggle...

I guess I am not going to get much sleep tonight.  Pam woke me about 1 am.  She was wrapped in a towel and needed help in the bathroom.  She wanted to take a shower and all she could get was cold water.  Apparently, she has forgotten how to operate the shower knob.  So I adjusted the water temperature and helped her into the shower.  I told her to holler if she needed any help.  A few minutes later, I hear this loud groaning.  I had left the shower water too hot for her and she was proclaiming that she was being scalded.  After adjusting the shower temperature, I suggested that she move the bamboo shower stool to the middle of the shower and sit down.  We have a large walk-in shower and I bought her that stool for shaving her legs a couple years ago.  When she finished her shower, I went into the bathroom and shut off the water.  About ten minutes later she called for me to help.  She was having a hard time  getting her bathrobe on.  I noticed that her right arm was in the left arm hole and she was struggling to get it on.  

Today is a major way point on this journey.  Until now, I have felt that Pam was good with her ADL's (activities of daily living).   Before now I felt that she would be able to continue to live in the condo if something were to happen to me.  But no more.  She is no longer able to live on her own without a caregiver.  It is a sad day.

I have been working on, albeit slowly, securing in-home care assistance.  Today has raised the urgency a notch or two.  It's not that I can't provide all the care that she needs right now.  It is because being the primary caregiver is a 24 hour job.  So far I have not felt the need to get away from the condo to do something else, but I can feel that need rising.  But am I going to find someone that I trust enough?  Someone that will care as much as I do?   I struggle with that.  And even if I do, is getting away and doing something without her going to be possible.  Or will I spend the time worried about how she is doing?  Time will tell.

Currently, I am trying to arrange an in-home assessment with two providers.   They use that to evaluate the home situation and the patient, and then propose a plan of care and the services that they can provide.  To my surprise, I have ruled out one agency so far.  Before you can arrange the home assessment with Visiting Angels, you have to complete two forms.  The first is to highlight your personal interests, hobbies, etc.  The second is to build the patient profile and demographics.  But it includes providing them with the detailed contact information (and copies of the documents) for your financial and healthcare Power of Attorney, along with all your medical team.  That level of detail is certainly appropriate once you have decided to engage in a business relationship, but seems premature for an in-home assessment.  So they are out for now.

I find that I am getting more and more emotional lately.  I can't even read a short blurb about us without tearing up.  This disease is devastating.  It is cruel and unusual punishment.  I understand that this same comment is probably made by caregivers for cancer, MS, and many other patients.  Seeing what it has done to someone we love is emotionally wrenching.   Watching Pam struggle to take off her shoes or put on a shirt is so painful.  And knowing what is ahead, I don't even want to think about it.  What will days be like when when she loses the ability to talk or even fails to recognize who I am.

And lastly, I can not say enough good things about the support group that I am in.  I went into it without any expectations.  I am not one to talk about touchy-freely stuff or how I feel, especially to strangers.  But there is something different with this group.  Begun by the Alzheimer's Association as an eight week program, the group has remained active for two years.  They continue to support the group with an excellent moderator and the Zoom facility.  The range of caregiver experiences in the group is invaluable.  I have learned so much.  But beyond that, it is more like a band of brothers.  The encouragement and emotional support has been amazing.  I am so glad that I joined them.

A Very Special Edition of This Blog...

 This is a very special edition of the blog.  Fifty one years ago today, Pam and I said "I Do" in front of a small gathering of friends and relatives.  The event took place in the Congregational Church on Main Street in Dunstable, Massachusetts.  This is where Pam grew up.  The reception took place about ten miles away at the Grange Hall in Hudson, New Hampshire.  This event took place just eight months from our first date.

We planned and paid for the entire event... well Pam did most of it.  She made her own wedding gown, we hired a friend to be the bar tender, we hired my sister's husband to be the photographer, and the hardest part was the guest list.  We had a size limit for the reception.  But we both had many aunts and uncles and cousins and had a difficult time deciding who we could invite or not.  And to make matters worse, my mother passed away in her sleep less than four weeks before our wedding.

Being married wasn't always easy.  We have had our trials and tribulations over time, but if you value it and work at it, it will survive.  And when things like Pam's dementia diagnosis occur, it is especially important.  I look forward to a hug every morning when she gets up.  And we hug often during the day.   It wasn't always that way.  But it is important that it is that way now.

And this would not be complete without mention of our three daughters.  They all have a strong work ethic and personal integrity.   We are very proud of all three of them.  And they are passing those traits on to the five grandsons.  We love gathering them all together for a meal and quality time together.  The following photos of our wedding were taken by Michael Del Monaco.  He did a wonderful job.

Pam, Wishing you a very Happy Anniversary!!

As the brain cells die, your world closes in...

This edition of the blog may seem a little disjointed and erratic. That is because I actually wrote it in pieces.  I just haven't felt like sitting and writing lately, which might be problematic as it is one of my coping mechanisms.

Here I sit, on your birthday, writing about you not having a good day.  I did the same thing last year.  I wonder if this will become an annual event?  Things leading up to it have been going well.  We were fortunate to find a seasonal site for our motor home.  I was nervous about how you would respond to changing your environment from the condo to the RV, especially since you are still looking for the "upstairs" in the condo.  But you were comfortable and "at home" in the RV.  I am guessing that the seven months we spent as "snowbirds" helped achieve that.

The two eldest daughters and three of the grandsons made the one-hour trek up to visit you for your birthday.  Just before they arrived, you fell asleep and you slept the entire day.  You missed some valuable time with the grandsons.  The older they get, the more their own activities will diminish the time that we get to spend with them.   We made burgers and dogs for lunch and then I went out to get pizza for dinner.   At about 8:30pm, we cracked into your birthday cake....  without you making the first cut.  But we saved you a piece.  We all had a good day together and everyone got home safely.

You did give me a scare when you woke up crying at about 2 am.  You were cold and shivering.  I tried to help you but you didn't want any help from me.  I cranked up the RV heat and stood there watching you until you fell back to sleep.  In the morning you had no memory of the event. 

I have learned that being a logical thinker, like I am, is a major disadvantage when dealing with the dementia.  There is just no reasoning with it.  We have had a couple of instances where we would have a discussion and both think that were were all set, only to find that we are not just on different pages, but in different books.  And that is my fault.  I need to remember that your reality is created by a brain that is damaged.  The dementia has altered your reality.  You can't adjust, so I have to.

We finally got our motor home situated on the seasonal site.  It is only one hour from home, so we can return quickly if we need to.   We found six days of quiet time there at the end of May and then had to go home for a couple of doctor appointments.   After the last appointment, we drove back to the RV only to pack it back up and head the thirty miles to Tamworth, NH for the rally of the Granite Staters chapter of the Family Motor Coach Association.  The small group had exclusive use of the pavilion for the weekend which was good because it rained the entire time we were there.  

I now understand why your doctor doesn't want you traveling.  After four days at the rally, we drove the RV back to the seasonal site.  As we pulled into our site, you asked where we were and why were we there.  You spent a week here and were only gone four days.  But your short-term memory is gone and you had no recollection of being here before.  The travel disrupts your routines and without the short-term memory it is hard to restore them.  After another week of quiet time living in 300 square feet, we headed back to the condo.  You have a number of appointments spread over the next ten days, not to mention our 51st Anniversary and Father's Day.  And we were able to sneak in another monthly "Sista's Lunch".

This might be a good place to update everyone on your condition.   We had an appointment with the neurologist and she has confirmed that it most likely Lewy Body Dementia (LBD).  There is no definitive test for it, but the brain scan showed a reduction in activity on the left side vs the right.  The  hallucinations (another indicator of LBD) vary from day-to-day.  They are still mostly about the presence of our daughters or your  sisters.  We are fortunate that delusions and negative behaviors have not materialized so far.  Recently you woke up in the morning and had no idea where you are.  It took about fifteen minutes for that to go away.  I suspect that will continue to worsen.

Along with the cognitive declines of LBD are the Parkinson's-like symptoms.   Lifting your legs to get in or out of the car has been a problem for many months.  That is getting worse as you struggle to drag your feet across the passenger side.  We carry the transport chair for any situation involving any significant amount of walking.  Recently you have needed help getting dressed.   At least the clothes are on right-side out.  The other issue for you has been the back pain.  The  x-rays and MRI of your spine document a significant  amount of scoliosis and stenosis.  The physical therapy helped a little, but the six steroid shots into the spine by the pain management folks did not help at all.  We have another appointment with them in a few days.

So that leaves the question that I am asked the most... how am I doing?  Being the primary caregiver can be exhausting.  Not physically, but mentally and emotionally.   After much thought, I have begun looking for in-home care.  It can take some of the load off me and maybe provide a face for you to talk to other than mine.