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.


  1. Glad you have the cooking for some release and distraction. Happy Easter, Cuz!

  2. You sort of contradicted yourself on hospice. Your comment (" 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. ") was very telling as to your need. Sometimes just listen to yourself! I doubt that your wife meant that you should sacrifice your physical and mental health to keep her home. Just my opinion from a million miles away! You are constantly in my thoughts and prayers. My son is taking me to the west coast for the opening of the Red Sox season with games in Seattle, Oakland and LA. Driving the whole way once we get to Seattle. I'll miss more meetings but I'm still with you and everyone else struggling with the reality of caregiving.

  3. I echo Bob's opinion doubting that Pam meant you should sacrifice your health to keep her home. When we're young the future is bright. In-home care at this level is not something I would have been planning for.