We Appreciate Your Continued Love and Support...

 For those that have been following our dementia journey closely, I wanted to report a significant change in Pam's status.  There has been a marked decline in her condition in the last 48 hours.  While she is still eating, she is eating much less and drinking much less.  She is declining to eat foods that were always her favorites.  And she spends the bulk of each day sleeping.  When trying to converse with her, her replies have little to do with the subject that you are asking about.  I suspect that the hallucinations have returned.

So as of today, April 24, she has been placed on "final days" protocol by the hospice team.   While her final passage may still be weeks away or longer, this protocol results in a significant increase in care visits from both skilled nursing, social workers, and chaplains (if desired).  They have significantly reduced her medications to only those dealing with comfort.  This change is difficult to process, emotionally.  As much as we have all known that this disease has no cure, and that we try to prepare ourselves for this reality.  We have learned that you can never really be prepared.

The family has received many offers of assistance and we appreciated it very much.   Please bear with us as we focus on helping the grandsons navigate what is happening to Gmom.

Now Who Needs The Comforting...

My most recent blog post precipitated a number of comments from people that mean a lot to me.  Thank you for caring and Thank You even more for speaking up.  Please do not be alarmed by my post.   Grief is a normal human response to an important loss.  I am grieving the loss of my wife.  She is gone.  There is still someone named Pam that is living here, but she is not my wife.  She is not the person that I fell in love with and married many years ago.  She is not the person that joined me in raising our daughters.   I am just mourning my loss.  Remember, I am a pragmatist.  Feelings like hopelessness are not on the agenda.  I do feel blessed because Pam knows who I am (most of the time) and responds in-kind to hugs, kisses, and I love you's.   Yes, it can be very challenging when she does not want her clothes changed or to take her medications.  I will continue to deal with these situations as best I can.   But I do not feel especially stressed with the physical aspects of care giving.

Regarding my physical health, rest assured that I do not take it lightly.  In the past six months, I have seen my primary care doc, along with my cardiologist and pulmonologist.   I have further testing scheduled for early June.  It is not being ignored.   There is no doubt that this journey is taking a toll.  But we will get through it.

Loss Is An Extreme Stressor And Can Take A Major Toll On You...

 This past week we hosted the monthly Sista's Lunch and I thought it was the one that I have been dreading for months.  It was not because we had guest chef, Allyson.  No, she put together some wonderful stuffed shrooms, a very tasty Apricot Chicken, and a beautiful fresh fruit tart.  The one that I have been dreading is the one where Pam is bedridden and can no longer show up.  I know it will happen.  And that is exactly how the day started out.

Pam went to bed around 10 pm and the night was uneventful.  The hospice nurse came for her weekly visit late in the morning.  When she arrived, Pam was still sound sleep.   The nurse tried to get Pam to recognize her but she was unresponsive.  The nurse took the vital signs and we discussed changes in symptoms.  Shortly after the nurse left, the Sista's started arriving.  Each paid Pam a visit.  Each tried to arouse her for the luncheon.  Each came back out of the room with a tear or two.   It is difficult for them to watch their sister deteriorate like this.  I am the oldest of five siblings.  I have lost three of mine.  But they have not lost any.... yet.  Eventually, she rose and joined us.  Staring around the room but not speaking much at all.

As each day passes, I struggle with the grief.  Watching her peering the outdoors with a totally blank stare on her face.  The stare is one of confusion.  She no longer understands the world around her.  She once was a master of Trivial Pursuit.  She once excelled at charming her retail customers, in sharing her vast knowledge of custom window coverings.  She was such an impeccable dresser and now can't wear matching shoes.  Some of her is still there.  When gathering clothes for her to wear, she still evaluates colors and patterns.  She can't communicate her thoughts, only patting the shirt that she thinks goes with those pants.  How can this world turn loving and caring people into vegetables?  How can that happen in front of the people that have adored her.  I guess it is good that I am agnostic.  Watching this, feeling this, could turn one.

While this is going on I am crashing.  My weigh is ascending and my health is declining.  The winter season makes it worse.  I want to be traveling.  My bucket list is extensive.  But I can't.  I want to be out making things in my shop in the garage.  I have window boxes to build and plant.  I can't.  I am banging on the keyboard instead of banging on the nails.  We loved spending time with our grandsons.  We can no longer do that together.  The two oldest are most affected by what they see.  They spent the most time with her.  They will experience the grief more than the other three.  So much grief.  One of my friends from the support group made a very profound statement about that this week.  He said that he has been grieving for the past couple of years..... there is just no grief left.  I long for the day when there is no grief left.

 

Any Time Family is Together, We Are Blessed...

Another difficult night.  This was the third in a row.  Pam went to bed about 9:30 in the evening.  She woke shortly after midnight and remained up much of the night watching TV.  Sometime she was falling asleep.  Repeated attempts to get her to go back to bed are met with angry resistance.  When she is reluctant to go to the bedroom I will try to get her to move to a motorized recliner gifted from our youngest.  Once she's seated in it, I can raise the foot support and lower the back to put her into a position where she can't fall out onto the floor.  

This morning was another interesting morning.  Technically it was morning, it was 2 am.  Pam got up and dressed herself and came out to watch TV.   I made myself some toast and sat down at my laptop.  She asked if I had any for her.  I volunteered to go make it but she insisted that she would.  A few minutes later I go to the kitchen to check on her.  Her loss of cognitive abilities is very evident.  Instead of toasting the bread and then applying the butter, she had it buttered and sprinkled with cinnamon sugar before going to the toaster.  I intervened and started again.  While I was doing that, her pants started falling off, revealing a second pair of jeans under the first.  Those are only two examples of her cognitive loss.  Dressing herself affords several.  More often than not, her shirts or pants are on inside out.   Almost always she has two different shoes on her feet, usually on the wrong feet.  And sometimes one of the shoes has a sock over it.  When I make cookies, she will remove four or five from the bin, take a bite, and then return them to the bin.  Sometimes she will come out with a watch on her wrist.  One on each wrist.  She likes to drink Crystal Light.   Often she will dump a load of sugar in the cup before adding the packet of the mix.  Last week she pulled the top off the salt grinder that we've had for several years and dumped the salt onto her food and then began eating it.    Little things that we don't even think about during our day become a major appearance or safety issue.  Which is why she can not be left alone anymore.  Sad.

Now that our family gathering for the Easter buffet is over, I will note that Pam did pretty well.  She was up early.  Her clothes were soaked and she was very willing to have me change them.  She was awake and alert the entire day, but she did not speak much at all.  I had spent all day Saturday cooking and with the help of daughter Allyson, we finished up the cooking and everyone sat together to eat.   Pam ate very little.  That was funny considering that she was always trying to raid the cookies and muffins that were made on Saturday.  And once the cinnamon rolls came out of the oven, they became the focus of her attention.  Most of time she sat in a chair and looked at everyone around the table.  At one point, I lost it and had to leave the room.  Kendra and Pam were sitting next to each other at the table and Pam didn't recognize who she was.  I was in tears. This is such torture watching this happen.  But in the end, the family was together.  There was love and laughter in the air and a ton of good food shared on the table.  We are blessed.  We all hope that you had a blessed Easter as well.

While it actually might be a year or two away, we have begun the end of life planning.  We have decided to do a burial at sea, like her mother.  We have chosen an urn made for that purpose and selected a maritime operator.   The immediate family will be joined by her sisters and my sister.  Her family used to rent a cottage near York Beach, Maine for vacations, so we will head offshore of York.  Before the burial we will have a celebration of her life at our condo clubhouse.  I have already begun assembling pictures of her from our collections to run as a slideshow.  Planning these things feels so creepy.

Easter Buffet With Food To Feed An Army...

As the ravages of this disease march on, it just keeps getting harder being the caregiver.  It is so hard to watch your loved one suffering.  Although the reality is that most of the time she does not even understand her suffering.  When Pam wakes in the morning she has no clue where she is or who I am and often won't even open her eyes.  It takes about an hour for her brain to 'clear'.  When she is unsure of who I am, she is very reluctant to accept help changing her clothes.  If I question her about who I am or can I help her change, I often just get that giggle.

After the seizure on November 1st, they removed her prescription for the anti-depressant that she was on for many years.  Lately I have seen some signs of depression, so they prescribed a newer med.  Since then her zombie-like state has gotten much worse.  I don't know if it is the acclimation period for the new med or not, but it has been noticeable by myself and our caregiver.  But lets be honest, Pam was well aware of her diagnosis and the prognosis.  That would be depressing for almost anyone.   The doctor has taken her off the new med as of today.

I still think that putting Pam into hospice was premature.  My assessment is that she is in Stage Six of the seven stage model for Lewy Body Dementia.  She is having more and more difficulty in putting her thoughts into a sentence. So she is talking much less often.  She can still eat on her own but it has become much slower.  She needs assistance in dressing, bathing, walking, etc.  Lately she is sleeping for much of the day or in a zombie-like state. 

I must say that I have nothing but praise for the folks from Home Health &  Hospice.  Her assigned RN is out here weekly and the social worker is out monthly.  With vacation time and scheduling issues, we have had several RN's visit.  Each one is completely in touch with Pam's situation.  We have had a need for the on-call nurse several times and we have been very pleased.  We have also had several volunteers out here to help.  I have a ton of respect for all of them.   Anyone that can work in this environment every day and still show empathy for both the patient and the caregiver has a reserved seat in Heaven.  And even more-so for the volunteers.

Almost daily, I am questioning the decision to keep Pam out of a long-term care facility.  But she is adamant that this is what she wants.  She would probably get more well-rounded care in a facility, but I know that she remains safe and comfortable here.  I wonder if this is at all related to her mother, who had Frontotemporal dementia and was in a care home for many years.  The reality is that I am trading off my long-term health for that decision.   The stress and emotional drain is not doing good things to my blood pressure.  My cardiologist has said that my heart is in great shape.  I wish that my breathing was just as good.  We'll see what the Pulmonologist says in a couple of weeks.

I assume that my need to be cooking or baking something all the time is a form of release for that pressure.  In the last week, I have made a chocolate cake, chocolate pecan coffee cake, pizza, oatmeal honey bread, and a loaf of banana nut bread.  No wonder I can't lose weight.  Easter is coming up in a week.  Our family always went out to a Easter Buffet when the girls were younger.  There are fewer of them and they have become very expensive.  So again this year, we are putting on a buffet here at home.  Food to feed an army of guests.  Ten days later is the next Sista's Lunch.  I wonder how many more of these Pam can participate in?   In any case, there will continue to be a lot cooking going on in our kitchen.

Grieving Over What Has Not Yet Happened....

Last Thursday was one of my toughest days ever.  It was just a very frustrating day, all day.  Intellectually I understand that this is not Pam's fault.  She is not doing anything intentionally.  Yet the obstruction and resistance can be very frustrating.   All I am trying to do is insure that she is comfortable, safe, and pain-free.  Yea, I know, that was my logical self talking.

It started as soon as she woke up.  Her bed clothes were very wet.  I asked her if I could change her clothes and her 'pantaloons', which is my way of saying Depends without actually saying it.  She answered in the affirmative.  So I lead her to the bathroom and asked her to sit on the toilet.  I grabbed the clean stuff from the bedroom and went back to start changing her.  As I start lifting her shirt to remove it, she is pulling it back down.  As I try to remove her arm from a sleeve, she grasps the end of the sleeve, preventing it from coming off her arm.  I told her that I understand that she doesn't like this, but she needs to get the wet clothes off.  When it came to the pants, her reaction was the same.  She wanted no part in it.  She has always be very puritanical (protective) when it came to her body.  And I respect her a lot for that.  But because of the effects of the dementia, we need to get past this.

I made her some breakfast and she sat there watching TV.  After eating some of it, she began falling asleep at the table.  I was concerned about her falling out of the chair, so I woke her and asked if she would move to the recliner?  Again, she was resistant and wanted to stay where she was.  This resistance continued all morning.  When the caregiver showed up at 1 pm, I was like... good, you're here.  She's all yours.  But I went into the kitchen and read the poem.  For more than a year, I have kept a copy of the Alzheimer's Poem hanging in the kitchen.  I try to read it every day.  It helps me refocus my logical brain to understand the realities of this disease and what it has done to Pam.  It is not the Pam I married.  and it is most importantly not her fault.  Again, the tears flow.  Grieving over what is happening and grieving over what has not yet happened.

Speaking of the caregiver... she is amazing.  Regardless of Pam's state when Laura arrives, Pam just brightens right up.  Her expression and her voice are positive and happy.  Laura is able to get her into the shower without (much) resistance.   Pam just loves how Laura takes care of her hair and adds some makeup.  The primping is good for her.  She deserves it.  Laura has talked Pam into going outside and walking.  Yesterday, Pam walked completely around the block.  Laura has such a great rapport with Pam. 

But the disease continues to take its toll on Pam.  Most days, she wakes up in a complete fog.  She doesn't really know where she is or who she is with.  It takes about an hour for her to regain her self-awareness to time and place.  I am concerned about her blood pressure and temperature regulation.  She always had excellent BP.  Lately it has been high.  Often her skin is very cold to the touch.  I keep turning the heat up because she is cold.  I am starting to see signs of depression in her.  But who would not be depressed knowing what is happening to you.  She is still feeding herself, although the process of eating dinner is taking longer now.  We are going through a lot of Depends and doing laundry daily.  Her movements are slower and she is using the walker more often. Getting dressed is sometimes an adventure.  She wants to do these things herself.   Yesterday, she was having trouble with her pants.  When I offered to help, I found that she had on two pair of pants.  Cognitively she can no longer process simple choices.  It is best to just decide for her.  Wednesday of this week was another Sista's luncheon.  When my sister arrived, Pam did not recognize her.  We have called the hospice nurse several times in the past two weeks.  

But again, I read the poem....

Do not ask me to remember,

Don’t try to make me understand,

Let me rest and know you’re with me,

Kiss my cheek and hold my hand.

I’m confused beyond your concept,

I am sad and sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose your patience with me,

Do not scold or curse or cry.

I can’t help the way I’m acting,

Can’t be different though I try.

Just remember that I need you,

That the best of me is gone,

Please don’t fail to stand beside me,

Love me ’til my life is done.