My new “job”

Before Uncle Jim passed, he and Aunt June chose to live in a pleasant two-bedroom apartment at a retirement facility. Since his death, Aunt June needed someone to help with her care because she has Parkinson’s disease.

Beth asked if I wanted to be a part-time caregiver for Aunt June. I felt this was what the Lord wanted me to do—I accepted the job. 

Four ladies care for her—two caregiver aides, Evelyn, and me. I do whatever she needs. I take her to the grocery store, shopping, especially to get her free Clinique goodies. I take her dog, Ginger, to the vet, do her medicines, and do many other chores. I also wash, blow dry, and curl her hair. It is funny. I was a tomboy when I was younger, and I don’t think I’ve ever used a curling iron.

I enjoy taking care of Aunt June a lot. She is a wonderful Christian lady and a joy to be around. As with all families, there are issues to handle. We both had Type A personalities and butted heads occasionally.

She loves me to vacuum her apartment frequently. I hardly ever vacuum my house, so I didn’t understand why she wanted it done when I did so two days before. Sometimes, I did not have a great attitude.

Eventually, my care was no longer needed as Aunt June moved to North Carolina to be closer to Beth.

Dad the caregiver

I asked Dad what special things he did for Mom while she was sick. These are the answers he gave:

Mom enjoyed going in her wheelchair to the Coast Guard Station at the beach and sitting on the end of the wooden ramp. She enjoyed watching the tide come in and out. Mom enjoyed eating breakfast in a restaurant at the pier—she would sneak biscuits out of the restaurant to feed the seagulls.

Mom liked to go to the grocery store because she enjoyed seeing her friends—it was a social gathering.

She enjoyed sitting on the back patio, watching the bird feeder, and listening to the chimes.

They drove near the base of one of the bridges and sat in the car at the pilot boat dock so she could look out. It is beautiful there. Pelicans and seagulls sit atop the old wooden pylons, where the sun sets behind them.

On one of the last trips to the Mayo Clinic, instead of taking I-95 home, they took A1A along the Coastal Highway. They also rode on the car ferry. They went to Fernandina and ate at Spanky’s Restaurant on the water's marsh side and sat on the deck for a long time.

She loved watching the squirrels eat the sunflower seeds he placed on the window seal by her bed.

    

Thank you, Dad, for all the sacrifices you made and for the care you provided for Mom.

  U What can you do for your loved one that they can no longer do?   U

What’s next? (part I)

Monday night rolled around and Jamie called me to tell me the report from Mom going to her doctor.  Mom really liked this doctor, and she suggested Mom not get the feeding tube or the trach.  She suggested Mom go through Hospice.

Angie, the Hospice nurse, came by and evaluated Mom.  She told us the options Mom had.  They did not have someone from Hospice which could come home with Mom and take care of her.  Our family was to be the caregiver.  We knew Dad could not handle taking care of her anymore and was not an option.  An option was for her to be admitted into the Hospice facility which has twelve beds.  There are two nurses on staff and two helpers which would mean if Mom needed to use the restroom she may have to wait before someone could help her.  She pretty much needs someone with her at all times.

U  Are there suggestions your health care provider can give you concerning negative events/things they know will probably happen to better prepare you?  U

After she got out of the hospital, she could be admitted to the Hospice facility, or get care at home.  If Dad needed temporary help, they could admit her for five days to give Dad a rest, or if she did not like the facility, she could go back home.

At first, Mom did not want anything to do with a trach or a feeding tube.  She did not want any outside help to prolong her life.  Then after the visit to the doctor and getting evaluated by Hospice, she has decided to get both the trach and the feeding tube.  Dad called the doctors from Mayo and now something needed to be done immediately.

Jennifer stayed with Mom this past weekend, February 27^th, to let Dad rest during the night; she stayed up with Mom.  She told me the most Mom slept was about thirty minutes.  The doctor put Mom on a patch to help dry up her secretions so she would not choke.  Since she was on this patch, they did not put her on the medicine that helps her not go to the bathroom as much.  They were up a lot of the night going to the bathroom, sometimes every fifteen minutes.

Jennifer told me Mom is talking a lot in her sleep now.  Joan, Mom’s friend in her Sunday school class, had been trained with Hospice up North.  She gave Jennifer a book called, Final Gifts.  It spoke of things patients go through when they are near death. 

Jennifer told me Mom woke up during the night and with a blank stare looked at her.  She knew Mom was still asleep.  Mom talked in her sleep about the conversation she had with Angie.  One of the things she said in her sleep that disturbed me was, “Stop breathing.”  Since Mom does not share her feelings with us, I did not know if she had already given up. 

Her quality of life right now is not much.  She truly is suffering.  She even struggles to say a few words.  I called her last night to talk to her.  Dad answered the phone, and I talked with him for a few minutes.  He said he was resting for a little while.  I told him I knew it must be hard on him and he replied, “You have no idea, no idea.”  I told him I wanted to talk to Mom.  Mom got on the phone, and I told her I loved her and was praying for her.  She said a few words I could not understand.  I did not ask her what she said but commented I knew she could not talk very well.  She said she loved me and then we hung up the phone.  It was a very brief conversation, but I wanted to talk with her because tomorrow she would go into the hospital.  Dad had gotten in touch with the doctors at Mayo.  They decided to admit her to get a feeding tube at 7:00 a.m. the next day, which was March 2^nd, 2004.

Brenda

Mom cannot be alone at this point and needs someone to care for her at all times.  Brenda comes each morning to take care of her.  At first, my parents hired her to clean the house and help feed Mom.  Now, she is the primary caregiver in the mornings.  Mom told her she was not going to get any better.

In the afternoons, friends come over to visit with Mom until Jamie gets off from work.  Jamie then stays until Dad gets home.  Grandmother has helped out a lot and has been a blessing.  She lives across the street from Mom and comes over to help her in whatever way she can, even if it is to just sit with her.  Grandmother fell a long time ago and broke her leg, but her leg never healed right.  She has to walk with a cane or use a wheelchair at times.

 

If we cannot come down for the weekend, we would have to hire someone or Dad would have to be there 24/7.  Just getting her up to go to the restroom was a major task.  She has to wear a special belt around her waist to help us hoist her up without straining our backs.  It has two loops around it for us to grab.  After getting her up, we have to hold onto her as she struggles to put one foot in front of the other.  She has fallen several times before and luckily did not break any bones.

This particular weekend was my weekend to take care of Mom.  One Sunday morning on the way to church, I was walking Mom to the car and her feet stumbled under her.  She fell, but I caught her.  I lowered her down to her knees.  I learned from a previous mistake, that instead of panicking, I needed to remain calm.  She said, “You are not going to be able to get me up.”  I told her in a stern voice, “Yes, I am.”  I pulled her by the loops on her belt until she stood erect.  She was not hurt, and we continued on our journey to church.

    U  Who will be the caregiver for your loved one? (The caregiver needs to make sure they take care of themselves while being a caregiver.)   U

Valentine's Day

 

One night, I had a very difficult conversation with Joann concerning “Mom’s love schedule.”  Dad did not want two of the girls at Mom’s house on the same weekend.  The four girls in my family all have children and dogs.  Dad thought it would be too much on Mom to have more than one family there at a time.  It might have been too stressful for him as well.  Dad also enjoyed having us come down separate weekends to help out.

The conflict was Valentine’s weekend.  I teach and could come down the Friday before Valentine’s Day and stay through Monday, since it was President’s Day.  Joann also wanted to come up.  She only lives a little over an hour from Mom and could come to see her much easier than I could.  I openly sobbed and commented to her that I was counting on one hand the number of times I will be able to see her.  She knew without me saying that I meant the number of times I could see her before she died.  I asked Joann to talk to Dad.

She ended up not coming up the weekend I was there, but Mom also said before I left that we could come whenever we could even if there was someone already there.  I hate being far away from her and not being able to help out as much.

 

Jamie is basically on Mom’s permanent love schedule because she lives in the same town as Mom.  She helps out as much as she can, which is very demanding on her and her family.  Joann made a comment to Jamie to make sure she spent time with her husband.  Jamie commented there was not time for that.

Jennifer lives as far away as I do, and she has been a nurse for a very long time.  When she found out Mom was sick, she put her house up for sale to move closer to her so she could visit her frequently.  She and James had planned to move anyway so everything seemed to be the right time.  Several months went by and the house did not sell.  Over these next few months, Mom deteriorated so quickly, it was not advantageous for them to move.  With a new nurses’ job, she would not be able to get time off as readily as she needed to see Mom.  In order for her to help out with “Mom’s love schedule” they did not move so she could take off a lot time from work that she had built up over the years.

                                               

  U   If there is a conflict with the “love schedule,” what is the best way to resolve the conflict?  U 

U      Have you frequently asked your loved one what their wishes are concerning people visiting them?  U 

U      Would it be advantageous for a family member to move?  U

“Mom’s love schedule”

My sisters and I were trying to set up what Joann called “Mom’s love schedule” in which we all scheduled a weekend to visit Mom.  We were trying to cover all the weekends for the next couple of months.  A copy of the schedule was printed out for each of us.

Dad, even though he is retired, decided to work another full time job.  Mom doesn’t want him at home all the time taking care of her and would rather have him work.  All my life, Mom has served Dad, my three sisters, and I.  We had breakfast waiting for us on the table in the morning and supper in the evenings.  She went ninety to nothing all day.

 

Mom worked as a secretary at a local church to help put us through college.  She came home, cleaned, and washed a billion loads of clothes.  Now, she can’t do anything.  So Dad has a permanent love schedule of doing all he normally does plus all the things Mom used to do.  When I go home, I ask Dad if there is anything I can help him do.  I wash the clothes, clean, or whatever is needed.

U Can you make a “love schedule” for your loved one? U