Hospice

Lessons from Lois

My friend Lois died yesterday afternoon of old age. She was 97 and a joyful person all the many years that I knew her. For the last dozen years or so, Lois was blind from macular degeneration. For the last 2.5 years, she was in memory care. Prior to that, she lived in her home lovingly cared for by her children, grandchildren and home Healthcare staff. I rarely heard Lois complain if ever.. She might say something self criticizing for her weight which was a struggle for her. Or,, I might hear her say “I could complain but what good would that do me”. During COVID-19 lockdown, I couldn’t see her but I could call her on the phone and chat. It was difficult to tell if she knew who I was or if the many questions she asked were her way to cover her confusion. I loved those talks. Lois was always an encourager, helping me to see the positives in the day. When I would say goodbye and wish her a good day, she would say it was a wonderful day already because I had called.

I met Lois when I met her two daughters Barb and Beth and the rest of the Higgins family as a teenager. Barb, Beth, and I have been lifelong friends. Lois was always cheerful, interested, listened with compassion and generally helped me to feel good about myself. She believed that you offer your advice only when it was really needed. I needed that advice on more than one occasion. My husband and I made it a practice to visit Lois and her husband Dick whenever we were in Des Moines, usually 3-4 times a year. When our children were young, they came with us and visiting the Higgins house is a good memory for them. We were always welcome. When I was in my 30s, I had a tendency to complain about my mother and my mother in law for one thing or another. Lois let me know that wasn’t ok. She said that she didn’t go for the “blame your parents” theme of the time and encouraged me to see that my parents were doing the best they could and I needed to be thankful. Lois rarely corrected me so I was taken aback. I hadn’t realized that my comments sounded so negative. I learned to appreciate my mother and my mother in law in a new way and developed a close relationship with each of them that I cherish. I thank Lois for that revelation and for guiding me to treasure the women that I loved so much.

My memories of Lois include how warm and welcoming her house always was. I always felt like I belonged. She remembered my birthdays and always asked about my parents, my husband, and my children. Lois and her husband Dick, who died in 2013 were a model of a good marriage to us. When my husband Michael and I coached engaged couples for 20 years, we used little stories of how we saw Dick and Lois live out a good marriage. I knew they had arguments like everyone else but they didn’t have those arguments in public. We learned to be supportive of each other and save tough conversations for private time

I lost both my mother in law and my mother in 2012. Lois was a comfort to me. In her later years, she forgot that they were gone and she would ask me about them. For a brief moment, they would be there before I reminded Lois that they had died. My dad died in 2019 the same day that Lois lost her son Doug. Their funerals were on the same day in different states. I couldn’t imagine her pain and hoped that her dementia would ease her pain as she lived mentally in earlier times.

While life has given Lois many challenges, she always focused on the blessings and a positive way to respond. She also always left others with a positive thought. She has been an important role model in my life and I will miss her. From Lois to all of us, listen with love, encourage others, do what you can, don’t take yourself too seriously, be willing to lovingly say what needs to be said, argue if you must and do it in private, look at the positives and live this day joyfully.

Love and prayers,

Mymom

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Losing My Dad

Six years ago, I wrote a blog about losing my mom and the impact that has had on me.  Two months ago, I lost my dad.  His care was harder because when my mom died, my dad was there taking care of her.  We were his support and we helped to care for mom but the responsibility wasn’t all on us: my brothers, our families and me.  For the last six years, dad lived with us during the winters and lived at our lake home during the spring, summer and fall.   Each year he would come to our home a little earlier and stay a little later.  This past year, I told him that I didn’t think he should move back to the lake.  He needed more help and we needed to get him to the doctor.  He said he deserved the right to try so against my better judgement, we let him try.

While he was with us, he watched football and westerns on TV.  Every noon, he watched a local show with a Polka band playing music and couples dancing.  He cried remembering my mom and how they danced with their friends on Friday and Saturday nights so many years ago.  They had a friend who led a Polka band in Wisconsin; Jerry Goetch and his Orchestra.  There were many of those examples of ways that my dad would spend time remembering my mom.  He quit eating fish declaring that he didn’t like it (my mom is the one who didn’t like fish).  He watched the Macy’s Thanksgiving day parade (he never watched the parade with mom when she was alive).  He tried  (successfully) to tease me like he would tease my mom, just to see how fast he could get me annoyed or angry and then he would laugh.

Grieving my dad’s passing has included grieving for my mom again too.  For the last twelve – fifteen years, I called them every day.  Before mom died, I talked to both of them.  After mom died, I talked to dad.   The calls rarely lasted more than 5-10 minutes but they were a connection; a safety call.  If they answered the phone, they knew that I was ok and I knew that they were ok.  Oh how I miss those phone calls.  Fortunately, I have my children to connect with and you are helping fill the void that I feel.

For the last couple of years, my dad couldn’t really give me his fatherly advice anymore.  For most of my life when I needed advice, I turned to either mom or dad or both of them.  In the recent years, his focus turned inward as he struggled with every movement.  Dressing himself, thinking through any problem that came his way, eating, operating the phone or the microwave.  In the end, he couldn’t problem solve anymore.  If he was wet, he couldn’t think what to do next to change his clothes and feel dry again.  He didn’t want to move or walk or shower, or do any of the things he needed to do to take care of himself.  On his doctor’s advice, we moved him to a care facility eight months before he died.  It was so very hard to move him there.  I wanted him to be able to stay home.  We did try having a neighbor stop by to see him.  That worked well for  a couple of weeks but then the decline was too rapid.  It took three more weeks to get him into a facility.

Dad has had many medical issues over the last 30 years:  back surgery, stroke, heart bypass surgery, rhumetoid artheritis, diabetes, two knee replacements,  congestive heart failure, and a bout with menengitis that really impacted his mobility.  He has been very tenacious through it all.  I remember when mobility issues were thretening limit his independence about 5 years ago.  He had physical therapy to help.  He went from not being able to standup from a sitting position more than once or twice to being able to do 30 stand up and sit down exercises every day.  Those exercises kept him going for 5 more years.  Now it was really time for transition.

He entered the facility  as a short term rehab patient getting assessed for level of care needed and getting physical therapy to determine if he could get stronger enough for assisted living.  His insurance covered the short term care although every 3-5 days, they would cancel coverage, I would appeal the decision and then they continued to cover.  During this time, he saw a urologist, had a mesh put into his leg to prevent blood clots from getting to his lungs, had lots of physical, occupational and speech therapy, and determined that he had bladder cancer.  He was assessed to be in need of 24 hour care.  His cognitive abilities; the ability to problem solve was impaired so that he couldn’t safely live alone.  If he lived with others, he still would require 24 hours of care.  The assessment determines if this individual can evacuate in case of fire, can this individual use a microwave to heat food, can this individual care for his/her own basic needs by themselves.  If the answer is no, then they really can’t live alone anymore.

A month after moving into the facility, my dad had a heart episode.  His heart was giving out.  Since he didn’t have a DNR (do not resuscitate order), they rushed him to the hospital.  When asked about the DNR, he said he wanted them to try once.  He underwent several tests on his heart and his neuro system and it was determined that his heart was at end of life and we changed his order to DNR.  They didn’t expect him to live through that day.  We called everyone to visit him, brought in a priest for anointing of the sick and sat by his bedside.  He looked like death and we believed the hospital staff.  However, our dad wasn’t ready yet.  The next day, he was determined to sit up, have breakfast and get back to the care facility to get strong again.  He went back to the care center in long term care as a Hospice patient.

With this new information, insurance ended their coverage and we used dad’s remaining resources to pay for his long term care.  He wasn’t happy there.  He wanted to move back in with me and your dad.  It was so hard not to just take that path.  I knew that I wasn’t up for 24 hour care and I had my work and my family to think of too.   Last winter was difficult and my dad wanted no part of having strangers come into his home or my home to take care of him.

The facility was beautiful.  He tried to join in.  He ate meals with three other guys who lived there.  He joined in Bingo and Friday afternoon happy hours.  He watched football on TV.  It isn’t a coincidence that he lived to see the season end.  They had a good level of care and yet, he still had to wait as much as 1/2 hour to use the bathroom.  He didn’t like that.  Someone accidentally bumped his foot really hard and injured the toes.  He was really angry about that especially when the injury went unreported.  Instead, they called it ingrown toenails.  It wasn’t until we took him to the podiatrist weeks later that we heard that the injury was caused by bumping or knocking the foot really hard.  It can happen even in the best facilities.  Unfortunately it went unreported.  Sometimes, people don’t report accidents because they fear losing their jobs.  Someone stole his wallet from where it was hidden in his drawer.  Once he couldn’t trust the people who cared for him, he wanted to move.  He insisted.

He spent four of the last five months on Medicaid care supplementing what he could pay for his care.  He had to move into a semi private room and although his roommate was a very nice person, with no privacy there was no longer any dignity in his care.  He said to me that the $2000 per month that he paid for his care,   should have been enough to have a private room.  It wasn’t though, the cost of the room was $9,500 per month!  On Medicaid, he had to take a semi-private room when it became available.

We applied to be transferred to Hospice House supplemented by a grant.  Dad continued to pay the $2000 per month for his care and received a grant for the balance.  He was approved almost immediately and we moved him to the hospice house for the last five weeks of his life.  Medicaid doesn’t support Hospice care by the way.  We were visiting every 1-2 weeks and I continued to call every day.  He wanted to live in Wausau near my brothers or I would have visited every day.

Family support was awesome.  I don’t remember a single cross word or disagreement as my brothers and I worked together to make decisions on our dad’s behalf.  Our spouses, children, and grandchildren were wonderful in their support.  During the summer months when my dad could still travel, we took him for day trips to the lake at least six different times.  The logistics of helping him to travel were hard but he was determined.  He loved seeing the lake and seeing his friends at Saturday afternoon mass at St Francis.

In October, we had a 90th birthday party for dad at the small tavern that is near my brother’s house.  They let us have the tavern for the afternoon.  We brought in food and they provided a bar tender so we could have a real party.  I sent out invitations to all the family and to everyone in his address book.  Over 70 people came.  He couldn’t converse much but he was happy to see everyone and was happy to be there.  He still had a good appetite too.  I was so glad to see every person especially his sister, Carol.  She is about 15 months younger than him and still doing very well.  It was a real blessing to have that afternoon together.

He was stable from June after the heart diagnosis until about two weeks before he died.  We all visited as much as we could.  The hospice house was beautiful and peaceful.  The staff ministered to all of us as we shared in dad’s last days.  On the day before he died, I decided to drive over to Wausau before going on a retreat that I had planned with your dad and our friends.  I just knew I wouldn’t be able to relax otherwise.  On that Friday when I arrived, Steve and Connie were there.  After they left, my dad slept.  He woke for brief moments like when Jennifer wanted to talk with him.  I held the phone up to his ear to listen.  He heard her talk to him and he struggled to get one word out: Bye.  That afternoon, I took time to pray at his side, say a rosary and a divine mercy chaplet for him.  When I left, I said goodbye.  I told him I would be back on Sunday but he didn’t need to stay if he was ready for the place that Jesus had prepared for him.

I drove to my retreat late that afternoon listening to podcasts for work.  I felt peaceful.  Of course you know the rest of the story.  He died that night at 3:45 am in his sleep.  He died peacefully.  They called me right away and I called my three brothers.  He was gone now in his 91st year.  There are no words for that moment.