Caregiver to Caregiver

Potpourri: a mixture of dried petals and spices placed in a bowl or small sack to perfume clothing or a room

• a mixture of things, especially a musical or literary medley

When I was a teenager, shopping centers began to replace downtowns as the place to shop. A rather large one (which is still thriving today) opened in Greensboro and I checked it out with some friends. There were several well-known department stores that had moved from Main Street, restaurants, and a myriad of small specialty shops. It did not take me long to discover my favorite – a cozy boutique filled with eclectic home décor. Stepping through the door, my senses were inundated with exotic fragrances, winsome baskets, plush pillows and one-of-a-kind treasures. It reminded me of the gift shops in Chinatown that had enchanted me on my first trip to New York City in 1965. Though smaller, more crowded, and not as chic, it was similar to today’s Pier One stores. Having never seen the name before, I mispronounced it – calling it pot poor ree – until the sales person kindly rectified my enunciation – pope’ re. I was smitten with the store and the word.

As I perused my notes, looking for a topic for today, the idea of a medley of tips, snippets and verse to inspire you to embrace and excel in your role as caregiver came to mind. Here are some favorites that have been shared with me through the years – a potpourri (that is pope’ re) for caregivers.

• Owen Darnell wrote this poem for his wife Esther who suffered with Alzheimer’s. They had been married 40 years when she died in 1994. He passed away on July 11, 2005 at the age of 84.

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’m sad, sick and lost.

All I know is that I need you

To be with me at all cost.

Do not lose patience with me,

Do not scold, 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,

Though the best of me is gone,

Please don’t fail to stand bedside me,

Love me till my life is done.

– Owen Darnell

• An agency caregiver shared this great idea when I spoke at her church: 

“Each time I am assigned to a new client, I ask a family member to write a short biography that includes the names and ages of all immediate family, places lived, jobs held, interests, hobbies and other pertinent information. This enables me to communicate on a more personal level and helps the client feel at ease.”

Family caregivers who avail themselves of outside assistance should consider this idea and prepare a short bio to share with any new caregiver.

• A caregiver who was a regular reader of my newspaper column took time to express her thoughts on a subject that could make life easier when dealing with the death of a loved one:

I would like to comment about a situation that many of us caregivers eventually face. Recently my husband passed away at the age of 78. He had been sick for over ten years with heart and other ailments. He planned his own funeral. Something that was very important to him was that he did not want flowers. Instead, he asked that our family and friends give to his favorite charity, which meant a lot to him and helped many people. This was clearly stated in his obituary. Unfortunately, many people disregarded his wishes and I was inundated with sprays of flowers, arrangements and potted plants. These were beautiful and I would never want anyone to think I did not appreciate the good intentions, but when the funeral home delivered all of them to my house, I was overwhelmed. I counted over forty-five and this did not include the ones I asked to be left at the cemetery. I gave most of them away, as I just did not know what else to do with them. Again, I do not want to be ungracious, but I cannot help but think that donations to my husband’s designated charity would have been a much better choice. So, what I would like to say to people is if the obituary requests donations to a charity instead of flowers, that’s really what the deceased person wanted and I think it’s a good idea to honor those wishes. Thank you for the opportunity to say this.

• Here is more sage advice shared by a reader:

Yesterday, I was at the grocery store and noticed an elderly lady sitting in a car by herself. It was very hot outside, and the windows in the front seat were rolled down. I asked her if she was okay and she just stared at me without replying. I did not want to scare her, so I sat in my car which was parked close by and waited – over thirty minutes – until the driver returned. I wanted to ask this woman if she thought it was safe to leave an elderly person in the car by herself, but thought it best not to. However, I can’t stop thinking about this situation and all the problems that could have occurred. I hope this letter will make people think about the potential dangers of leaving elderly people alone in a car in a parking lot. 

• This wise advice – as are so many things in life – was learned through experience:

I just want to encourage caregivers to “get out and do something” with the person they care for. Many times, it seems that once a person needs a caregiver, they are confined to their home much of the time. I know it is difficult maneuvering wheelchairs etc., but from my experience, it is worth the trouble to be able to get out of the house and have a change of scenery. If you can’t do it by yourself, ask someone to help. These times together, away from day-to-day surroundings, can be very refreshing. Caregivers also need to get away by themselves occasionally and rest and relax without their usual responsibilities. When I do this, I always return with more energy and a more positive attitude. 

• An elderly gentleman who cared for his wife for years provided “a concise list of documents needed for legal purposes,” noting, “Everyone will need to do this sooner or later and sooner is better.”

A will – decide and write down how you wish your estate divided when you expire. A living will – instructions for your health care. Give copies to your doctor, hospital and/or nursing home. A power of attorney – appoint someone to act for you in case you are unable to act for yourself. (These will require the most honest person that you know to be the one responsible to carry out your wishes.) Personal information for future reference – Most funeral homes have such a form that deals with names, place of birth, education level, spouse’s name and date of birth, names of children, etc. There is a section for you to records your wishes as to how you would like your funeral to be handled. There is a page that spells out where your wills, bank accounts, insurance policies, securities, safe deposit boxes and other valuable documents are located. 

• This caregiver shared an idea for the best response in a situation many caregivers face, some on a daily (or even hourly) basis:

When the person you care for says the same thing over and over, this can certainly try your patience. Rather than reacting in an irritated or negative way, I try to respond as if the question has not been asked or the comment has not been made before – because in the person’s mind, it has not. Instead of complaining “I have already answered that question,” or becoming annoyed, realize the person does not remember and patiently answer as if it is the first time she has asked. If the repetition continues, and there seems to be no end, change the subject or provide an activity that will help the person focus her thoughts in another direction. Consider how you would feel if someone got upset at you, raised their voice, or said hurtful words just because you asked a question. I know that would hurt my feelings, and that’s the way persons with memory loss feel because they do not realize they are repeating themselves. Yes, it takes a lot of patience, but that is an important quality for a caregiver to have. 

• The other night I was watching a documentary about country music and was reminded of a song a friend and caregiver had told me about years ago.

“Where’ve You Been” was recorded by Kathy Mattea in 1989. The song was co-written by her husband Jon Vezner (about his grandparents) and fellow Nashville songwriter Don Henry. This beautiful ballad is considered the first mainstream song dealing with the subject of dementia. Another melody that will bless a caregiver’s heart (and probably elicit a few tears) is “He Was Walking Her Home” by Mark Schultz. 

When I checked YouTube to make sure videos of these songs are still available (they are), I was pleasantly surprised to see quite a few other “Alzheimer’s anthems” from a wide spectrum of genres – something for everyone. When you have a chance, take a few minutes to listen and reflect on the stories these songs tell. 

Sharing with other caregivers is always a good way to learn helpful information and be encouraged. I hope you have experienced both of these today.

Caring Quote: 

Where’ve you been? 
I’ve looked for you forever and a day.

Where’ve you been?
I’m just not myself when you’re away.

– Jon Vezner and Don Henry