Monday, March 25, 2024

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.


Friday, March 15, 2024

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.

                        

                    

Tuesday, March 05, 2024

Sing me a lullaby and I may stop crying...

 I would love to get into the head of a Lewy Body patient   Pam has been doing some really odd things lately and I would love to get into her head and understand why.  Do these things have meaning?  Or are they random acts caused by missing brain cells?  Some examples are in order.  Normally, when I wash towels, I leave the basket of dry, unfolded towels in the dining room.  With the help of our caregiver, Pam will then fold the towels as a form of upper body exercise.  Last week, instead of putting them away in the bathroom cabinet,  Pam left folded towels in each and every room in the condo.  One night I just went around picking up towels and putting them away.  What was going on in her head as she was leaving the towels around?

Another example is that she took my slippers from the bedroom and placed them atop the bathroom scale.  She then stuck a chocolate covered pretzel stick in each slipper.  Another involved spoons.  She took a booklet from the dining room and brought it to the bathroom.  Then she neatly placed five teaspoons on the booklet.  Another odd behavior involves cookies.  When I bake cookies, she picks up several cookies, takes a bite of each and then puts them back.  Just strange things like that.  I really wonder what is going on in her brain as she does this.   The pretzels were very tasty by the way.

I think this behavior is another stage in her decline,  For the past few days her nighttime sleep has been in fits and starts.  She will go to bed at 8 pm.  Around 9:30 or 10, she will be up and puttering around the house.  Then back to sleep an hour or two later.  Only to re-awake an hour tor two after that.  The last few nights have been just that way... all night long.    Last night I think she changed her clothes about seven or eight times.  Often the clothing is inside out.  It often involves two different socks and/or two different shoes.  Sometimes she will have two socks on one foot and one on the other.  I maintain a monthly calendar of events for us that she can ponder.  This week there is nothing on the calendar, yet she keeps asking me who is driving?

Her overall behavior may have gotten odd lately, but I am still very fortunate.  Many dementia patients develop angry, aggressive, or promiscuous behaviors.  Pam has shown none of that.  The two behaviors that cause me the most difficulty are her failure to speak and motivating around the condo with her eyes closed.   Often when we are trying to find out what she wants to eat, I provide her with some options.  I don't know if the problem is her inability to process the choices or that none of them are what she wants.  But usually, I line the choices up on the counter and give her the time to process.  Often, she will point to what she wants.  At other times I don't give any choices, I just decide.  At times her lack of voice is emotionally difficult for me.  Sometimes she will whimper or moan.  My assumption is that she is in pain.  But like an infant that can not communicate verbally, she is just not able to vocalize it.  It tortures me knowing that something is wrong, but I can't figure it out.

Often when she first wakes up, she is in a zone.  It is like a walking coma.  She tries to walk but is unable or unwilling to open her eyes.  So I did a little research and sight issues are common among Lewy Body patients.  They are often unable to recognize common objects.  Reading becomes a problem because their eyes can not converge.  That was a new one for me.  Normally, when you are looking at an object some distance from you, your eyes are aimed on parallel paths.  But when you go to read a book, that object is so much closer to you that your eyes are on converging paths so that they meet at the written words.  Those with Lewy Body have difficulty getting ther eyes to converge.  So maybe she keeps her eyes closed because they do not work as well and confuse an already confused brain.

This past Thursday was a very emotionally difficult one for me.    To some extent, she understands just what damage the disease is doing.  She began sobbing.  And it went on for about fifteen minutes.  I tried to comfort her, as did our caregiver.  Well, substitute caregiver, as our regular caregiver was on vacation.  Fortunately, the caregiver has a side gig as a professional singer.  As she was hugging Pam and trying to console her, she started singing.  I did not recognize the song, but it was one her mother sang to her.  For the longest time, the two of them stood hugging each other, with Pam sobbing and the caregiver singing softly.  I was in tears.  I could not hold it back.  The torture that a caregiver suffers watching their loved one suffering  the effects of the dementia and a perfect stranger singing a comforting song.  Why are we put through this lingering suffering?  Why are some of us able to transcend the suffering without going mad.  Why are we able to endure the pain and keep the focus on our loved one?  Questions that I can not answer.

Saturday, February 10, 2024

Time Has Not Made Things better...

My apologies, it has been over a month since I have written anything.  I tried a couple of times, but it just wasn't coming.  And I apologize that this one is so long. But let me catch you up.  On January 10th we had the monthly Sista's Lunch and it was the best day that Pam has had in months!  The day didn't start on a good foot, as Pam was up at about at 3:30 am and it appeared that we were going to have another bad day, where she sleeps on the couch all day.  

For those unfamiliar with  Sista's, Pam is the second oldest of six girls.   When we moved back to NH, she mentioned that she was looking forward to spending more time with her sisters.  For whatever reason, that didn't really happen.  They would get together for one another's birthday, but not much contact otherwise.  So I decided to host lunch once a month.  It got the sisters together more often, satisfied my love of cooking for others, especially family, and it gave Pam another opportunity to exercise those brain cells that were slowly being strangled by the Lewy Body Dementia (LBD).  They have been a rousing success.  After a while we invited my sister to join the festivities.   She fit right in and enjoys the encounter.

The day started early, which is not unusual for a LBD patient.  Many times their sleep patterns are erratic with a lot of daytime sleepiness and night time restlessness.  And throw in some hallucinations and delusions just for fun.  She woke about 3:30 am and went to the couch.  I turned the TV to Bones and she was in and out of sleep for the next few hours.  I woke her about 8:45 to get changed into street clothes because the hospice nurse was due in one-half hour.  They met and had a pleasant one-sided conversation, as Pam didn't say much.  When the visit was over, I went back to prepping food for lunch and Pam went back to snoozing in the recliner.  

Pam's sisters starting arriving around noon.  Pam perked right up.  She was chatting, laughing, and reminiscing with her sisters, and my sister for much of the afternoon.  She really loved the appetizer, loaded potato crowns (really McCain Baby Cakes).  When the main course came out, Pam was on her third helping of the appetizer.  I have not seen her eat this much in weeks.  There was one point in  the afternoon that I thought she might nod off, but her sisters got her reinvigorated.  One of our daughters even noted the improvement in Pam's posture.

The next social event was a week later when my niece came to visit from Atlanta.  Michele is only six years older than our oldest daughter.  When they were young, they spent a lot of time together.   We often refer to Michele as our fourth daughter.  


We were hoping that Pam would have another good day so that we could all go out to eat somewhere.  But we had a contingency in place if that didn't work out.   I got Pam up and dressed and we headed out for lunch.   Pam was doing very well interacting with the grandsons during the lunch, but you could see the mental fatigue set in as the afternoon wore on.   By the time we left the restaurant, Pam was pretty much wiped out.  We had a lot of trouble getting her coat on because she wasn't able to follow our directions.   But the lunch was worth the effort.

Despite the fact that Pam is on in-home hospice, we are trying to keep her as socially stimulated as possible.   The next social event was a Olive Garden birthday gathering for Pam's older sister.   Again, Pam's attendance was dependent on what kind of a day she was having.   I was able to get her up and dressed in time for the visit from the hospice nurse's weekly visit.  That went well and her vital signs continue to look good.  So after a short nap, we were off the Olive Garden.  One helpful aspect of this event was the presence of her Home Instead caregiver, Laura. 

We continue to have a care giver from a local agency here three days a week for four hours per day.  This gives me an opportunity to attend to other things like grocery shopping and doctor appointments or just to be on the computer for a while without having to worry about Pam.  We have a had a number of caregivers here, but the current one has done an outstanding job with Pam.  She is able to get Pam to take a shower, exercise, and do some sticker books.  Even more, exciting is that she is able to talk Pam into going outside for a walk.  You can see Pam's face light up when Laura comes to the door.   While the work she does with Pam and the creating of free time for me is all very important, the cost is significant and it is all out of pocket.  She even gets Pam to do funny things...

We are now about a month into in-home hospice.  For those that are unfamiliar with it, two doctors have signed off that they believe that Pam has six-months or less.  Not really a thought that I am interested in entertaining but it is the reality.  Personally, I think it is longer than that, but that is only gut feel.  Even her primary care doc is amazed at how quickly the symptoms have progressed.  As I have said numerous times, I can not change the destination, but I can certainly influence the journey.   Pam has no sense of time.  She can read a clock, but her brain just can't understand it, especially duration.  Her biological clock is screwed.  She is often up early morning and then sleeping all day.  A recent trip to a local restaurant was trying to say the least.  It took fifteen minutes to arrive at a meal choice.  Her brain can no longer process multiple choice questions.

Recently things have gotten worse.   Lewy Body dementia includes Parkinson's symptoms.  She has lost most of the range of motion and strength in her legs.  She needs assistance getting dressed.  She often tries to move around the condo with her eyes closed.  Her footsteps are four to six inches long.  Worse yet, her ability to communicate is diminishing.  Often, if you ask a question, she looks at me but does not answer.  For example, I woke up at about 4 am with her whimpering.  I spent fifteen minutes trying to ascertain what was bothering her.  Was she in pain?  Where did it hurt?  No answers.  I finally convinced her to change into dry PJs.  Maybe that was it because she soon feel asleep again.  It is just so hard for the caregiver.  My job is to keep her comfortable and safe.  But it is hard when they can not communicate.  It is like working with a crying infant.   Only the infant is 74 years old.

The decision to keep her at home was hers.  Many in the support group I am a member of have made the very hard decision to move their loved one to a care facility.  And almost to the person, they say that they waited too long to make that decision.  To them I say, I hear you.  I really do.  Maybe when she no longer knows where she is.  But this is what she wanted.  And just as I am living up to the promises I made almost 52 years ago, I am going to live up to this one too.   One significant effect of that decision is the emotional impact on me.  I am wiping away tears several times a day.  It is so hard to see how this disease has taken the person that I married.  Even our two oldest grandsons, the ones that spent the most time with Gmom, are emotionally affected by what they have seen.   

Our three daughters  have been wonderfully supportive.  And I have had several neighbors and friends offer to help.  I really appreciate the offers.  I may call upon you at some point, but I am handling it at this point.  I even got her out for a short walk today.  I continue to be thankful for every day that we have together.  I steal hugs every chance I get.  When I reflect on our time together, I feel good about how it turned out.  Our daughters are all productive citizens and two of our grandsons are finalists for Youth of the Year and Junior Youth of the Year  by the Boys & Girls Club of Manchester.  It is obvious that their parents have done a wonderful job raising the future citizens of this country.  We are immensely proud of our three daughters and their five sons.  However this ends, I feel like we will leave this place a better place for being here.