We are ultimately motivated by love. Caregivers might say it is duty that demands they take care of family members, but ultimately it is love. Sometimes people will minimize the efforts we make. Some will do a comparison between us and them. But that is neither fair nor right. Caregivers give their all and often sacrifice themselves for their patient. Very few people outside of our group understand that or comprehend that.
Consider that patients sometimes are the most verbally abusive of any group, especially when pain levels are high and stress is oozing out of the people in every encounter.
What does Love got to do with it? For us, it is everything. ALWAYS. We may lose every struggle, and fall under the crushing weight of bills, or be exhausted because of staying up all night, but as long as my wife is my sweetheart, my girlfriend, my honey bunch, my sexy hot chick on her blue spoked wheels on her chair, which prompted her son to call her Hot wheels (affectionately), we can handle anything.
So she might be bed for days with more decubitus ulcers from pressure sores gone wild, or she might be in the hospital with a fever making her unsure of where she is and seeing or hearing things that are not there, but as long as she is loved, and she knows it, she will be okay.
Things are not always perfect. Sometimes we have our spats, and our more difficult times might include a more strenuous argument. But we know who is in love. US. I cannot even think that our way is right for everyone. But, I am positive everyone has a love language. Things that will make each person feel loved and wanted.
This is the key. We have many people who need us in our lives. If you have a job, your boss needs you to show up at a certain time. Your efforts and your talents are needed to finish work for your boss. You are needed by creditors to pay your bills. You are needed when chores need to be done. But that is not the same as being wanted.
On one very trying period of time, my wife was beside me in bed and at 4:30 in the morning she woke me to tell me that she was not feeling good. When I checked her temperature she was already running a temperature of 102.5 and it was rising. She was soon not quite in her right mind, and she started seeing and feeling things that were not reality. I got her into our Dodge van which was not running good, because of a foolish neighbor who stole our gasoline and left debris in the tank causing engine trouble. My mechanical ability was needed to get the van running. My driving was needed to drive her to the hospital quickly, but my presence was wanted when we got there. Not that I was needed to take care of her, because the doctors and nurses began to treat her for Kidney failure, but I was wanted for her feeling secure. Loved. Not alone. Cared for and cared about. After the first day, I went home and slept for a long time. It was dark again when my phone ringing woke me up and I listened in a groggy half awake state while a nurse spoke in urgent tones, telling me that my wife was hysterical, that she would not sleep, that they had tried everything to get her to sleep, but she was babbling and wouldn’t sit still. She was still running a fever and she was asking for me. I quickly poured a cup of day old strong black coffee and struggled to wake up, and as quickly as I could, I got back to the hospital.
When I got to the room, a nurse spoke to me just before I went into my wife’s room and explained they had given her sleeping pills, sedation and had tried several other things including milk and other things to induce sleep. The nurse explained that my wife needed to sleep in order to get rest and they had not seen her sleep for the entire day and half she was there.
I walked in the room and my wife started to laugh softly and to smile and she changed immediately. A young intern and a nurse were standing there and the intern, observing her immediate calming down, shook his head and mouthed the word, Wow. I sat beside her bed and talked to her, but she still would not go to sleep. I held her hand and even sang to her. She still was not completely calm and was still not sleeping. A nurse came in and tugged my sleeve and whispered me to come into the hall. I walked out into the hall and immediately the nurse asked what worked at home for us. I told her there were times I had to hold her.
The nurse ordered me to get in bed with her. We are talking about a narrow bed in a hospital. We are not big people, but that bed is not that big. Good thing it had those safety rails. I laid down beside her and she fell asleep immediately. One moment she was telling me how glad she was I was there, and before she drew a second breath she was asleep. The nurse just smiled and walked out turning the lights out as she went out the door.
I spent a week going to the hospital to be with her. I sat beside her during the day and wrote or sketched in my drawing pad. I did some paperwork and made phone calls, but as long as I was there she was calm. I am sure that the high fevers had a lot to do with her panic and hysteria, but the situation also proved that I was wanted. Not just needed.
We lose sight of that from time to time as we are caregiving. We get stressed and are juggling schedules, dealing with meds and worrying over many things, and then we can say things that are not kind, or thoughtful or loving.
I have found that if I continue to court my wife, she is usually very loving in return. It is not hard to love someone. Face it, the reason why you are caring for your loved one, is because you love them. In my case, I am caring for my wife, but we are all there in the caregivers seat because we care about the patient. We may be caring for a child, a parent or another relative or even a friend. But we are doing what we do because we do care. Hey! It’s okay to take a bow here.
When I say to continue to love the patient, I mean if you are married, act married. My wife may be in bed for days, but she will still get the surprise flowers from time to time. She will get her favorite snacks, and she will get her compliments. Some of my methods I learned from Dr. Kevin Lehman and Dr. Randy Carlson. I listened to them when they hosted a radio program years ago when they were broadcasting on a local Christian station. One of the most valuable works they produced was a book titled ‘Sex begins in the Kitchen’. As you can probably assume, it isn’t talking about the normal concept of sex. The book is presenting a beautiful picture of loving one another all day. And just as important, how we treat one another during the day determines how we are treated too.
I think the biggest problem we deal with is that when the medical issues overwhelm us, we soon have our whole world revolving around those issues. That can make our relations shift from family to almost a professional situation, as nurse and patient.
I have found that when I am dealing with a patient who is also family, that everyone does much better when the relationship is preserved. It is easy to let the relationship slip. But it is not good to do so. Because as countless studies have shown, people heal better and faster when they are secure in the love of family and spouse. It is a given. And besides that, it is just so much better for all concerned.
So we have date nights as much as we can. If my sweetheart is bedbound, then we have our dinner on the bed with the blankets as a table cloth. She gets breakfast in bed a lot. Even though she is able to get up much of the time. It makes it special. She gets those words of compliment and praise for her appearance and her talents, especially when she is unable to get out of bed and move about. Depression is a powerful enemy, but it is not as hard to deal with if a positive reaction is manifested from us.
Pain can make people short tempered and very verbally abusive at times. Understand that it is the pain talking, not your loved one. The saying that people have to vent is an absolute in our situations. But vent safely. And help each other direct it safely. Verbal abuse of the other person from either patient or caregiver is just going to break a heart eventually.
I find it easy to compliment my honey. She has many good attributes that show through even on the worse of days. But if you can’t find a good thing to say, May I suggest you think back to how you became family in the first place? The qualities that your patient had are what drew you to them. And if the truth be told, those qualities are still true for you. So think on those things. I actually have a favorite Bible passage for that thought. Philippians Chapter 4, verse 8 “Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable- if there is any moral excellence and if there is any praise-dwell on these things. That is a good formula to avoid sinking into the lower levels of thinking such as discouragement, depression and negative talk and communication.
One final thought to take away from this, your patient is not personified in the bandages, the health issues or the wounds. Your patient is a person with mind and heart and desires and passions just like you. Love them for who they truly are. If you love the heart of another person and the attitude and the thinking, their physical appearance will matter far less than their mental and spiritual self. You would want to be loved and wanted for what is in your heart and soul. So if you love your patient that way, you will taste the real flavor of real committed relationship which is so far better than the shallow flaky stuff of the many selfish people in this world. Think about it and try it. It may take time, but real love does conquer a world of hurt and rejection. And above all be patient and let love have its perfect work.
It’s got to be love…unconditional love
after 49 years of marriage, and more than 20 of them with parkinson’s and everything that goes with it, i’m more than just burned out. honestly, i’m doing it because of wedding vows, and because of the example i’m being for my kids and grandkids. i was burned out at my job, when i retired to do this, and his rapid decline has burned me out, here, too. just “sliding down the razorblade of life”…
Family comes first
Love love love
It definitely is Love!
I strongly agree
Deep compassion love and concern for our loved ones
Love, honor, privilege, obligation.
Thanks for sharing
I do it for love for my husband of 42 years, he has advanced PD and will always as long as I am alive do it. My dad on the other hand, I do out of a sense of obligation, he is not my bio Dad and not very nice however I am all he has, so I am there.
Yes but not at the expense of being abused and disrespected.
And that is why afterb3 uears of caregiving (out of love) I placed my narcissistic mother in a home.
I understand, I am caring for my husband who was diagnosed with lung cancer and emphysema in 2015. You did the right thing if all you were getting abused and treated like you are a no body