I don’t always think of the other person. None of us do. We get so caught up in our own thoughts and feelings that we lose sight of the other persons’ feelings. I was feeling frustrated a few years ago as I tried to take care of all the errands, the pharmacy runs, grocery shopping, keeping vehicles running, and trying to hold onto enough work to pay the bills. Upon finishing one task, I would often find two more immediate needs that had to be taken care of to take the place of the one I had just finished. It was very frustrating. We were dealing with those ulcers that form from pressure sores and my wife was not a happy camper! She had to stay in bed and only lay in certain positions. There is only so much a person can do with a restriction like that.

I tried to provide as much entertainment as possible, but it was rapidly getting her frustrated, too. I made sure she had her computer, plenty of videos and snacks as well as liquids, knowing that it would all be rather inadequate by the end of the day to relieve her boredom. Off to work I would go, all the while worrying about her, wondering if she was alright and generally a bear to live with myself as the stress and frustration continued to build.

It is easy to get into arguments. And it is just as easy to have them drag out for a long time. It really boils down to how we choose to react to each situation that comes up. I would often hear the negatives that were spoken much more clearly that I would hear positives if I chose to do so. And by the same token, if I chose to listen for positive feedback I would notice and hear a lot more positive comments. The direction and type of conversation is always determined by how we react or respond to what is spoken to us.

On one particularly trying day, I was out repairing a cooler fan for a friend and earning some money doing it. He observed that I seemed to be a lot more stressed than I had been in church the previous Sunday. I gave him a rather lengthy description of all the things I was dealing with that week and how I was getting very frustrated with it all.

He broke into my long description of things to remark that he felt sorry for my wife. I paused and let that sink in a moment and then asked him what he meant by that statement.  He answered that if she was having to lay in one position for a long period of time, she probably was as frustrated as I was. Because my friend was a public school administrator, he was well aware of my wife’s teaching career. He pointed out as carefully as he could, (I think he might have thought I was going to react the wrong way) that my wife was used to being up and active and dealing with a classroom of students. He pointed out that she was probably going stir crazy by that time in the afternoon that we were working on his cooler. He then said something I have often heard and just as often lost sight of, which is before you get too hard in judging people, walk a while in their shoes. If someone else had said that I would have thought they did not have a clue what it was like to be a caregiver. But that was not true of my friend. His wife had Alzheimer’s and she was starting to lose ground rather rapidly. He definitely had been in some difficult situations with her mental health deteriorating as it was.

This conversation reinforced something I would often counsel the families of drug addicts to do. I was involved in working with drug addicts and alcoholics to help them get their lives on track and off the addictive chemicals. One principle I would teach the guys I was mentoring was to respond to situations, not react. When we react we tend to blurt out whatever comes to mind first and it is usually the wrong thing to say. But if we respond to what is happening, it means we are tailoring our words and actions to bring resolution. Anger, frustration, hurt feelings, emotional retaliation come out of those reactions that are not thought through carefully. A response is generally going to ease the tension or lighten the mood while a reaction in kind is going to escalate the friction and hurts.

Some principles are obviously good for any married couple or family relation. But when in a caregiver/patient relationship, the failure to understand the other person is going to greatly aggravate the discussions and conversations.

My friend the Police Officer who lost wife, mother and father over a few years to cancer once advised me to consider that the pain and frustration coupled with the inability to move or function normally will be especially difficult for the invalid. He said that as a Police officer, he had been called for domestic disputes. He would be accompanied by a social worker and would go on calls where family members were in loud or even violent arguments. The purpose of the calls of course, was to resolve the conflict before the people did each real harm. He observed that when people were normally active and busy and they found themselves immobilized by an accident or illness, the situation was especially hard for them to endure. Conversely, if a person was a couch potato before they were laid up, there wasn’t as much frustration on the part of the invalid.

Over the last few years, I have been involved in several counseling situations involving a caregiver/patient situation. All of what my two friends pointed out has proven to be true.

My Police officer friend also pointed out several other things that we often don’t realize. That is, we are dealing with someone that is soon losing track of time as we know it. The patient can ask for a bowl of soup and you the caregiver might be moving double quick in getting it ready, but to them you are dragging your feet. This is because a watched clock tells time slower, and a watched pot never boils. I know those are old cliche’s, but the fact is, time drags forever for the invalid confined to the bed, while the caregiver is struggling to fit all the tasks needing to be done into the day. And if you are a working caregiver, and are trying to make a living while caring for an invalid at home you are actually pulling a double header every day.

I often say a prayer of thanksgiving when I think about my wife. She is an artist, she reads, she can do a lot from her bed or wheelchair. Not only that, but she tries to see my side of a situation. I found that communication is key to keep the resentment from building. If you are caring for someone who is coherent and lucid, there is no reason why they should not understand that your world cannot revolve around them 100% of the time. However, for those who refuse to see your side, there is really not much you can do about it. It goes back to reacting or responding again. What you do with that reality will be what determines your thought for the day, your dominant feeling and your general outlook on life.

There are many issues that are manifesting in the care of an invalid. But one thing we often don’t recognize is the fear the patient is feeling. Surprised? Don’t be! It is a very real issue for the patient receiving care.

Twenty-five years ago, I had a chemical accident on a job I was doing. For a period of time I was hospitalized and on life support. As I got well enough to communicate with the doctors and nurses in the hospital, I asked that my family would be contacted. When the nurse placed the call to my wife, she made it clear she was not interested in carrying on the marriage if I was so sick. Her last words to me were, “I did not marry you to watch you die. You will never see me or your children again.”  The doctors next contacted my parents, and my dad said I would be fine, that all I needed was time to heal, but he did not want to take the time to come and visit or offer even to talk on the phone. That changed my perspective on things dramatically, I can assure you! But the fact is, whether we like to think about it or not, whether we like it or not, we fear being left alone. So again, walk a while in their shoes. The person you are caring for may be an older family member. But when you look around, the only person you see is the one looking back at you in the mirror. There may be aunts, uncles, cousins, brothers, sisters and other relatives close by. But you see very little help. Our reaction? We dwell on the fact and think about the fact that we are the responsible one, the lone caregiver and provider of services to the patient. We only see and think of what we are feeling.

What do you think mom or aunt or dad or uncle or grandparent feels? They too see only you. They too are aware of the number of people in the family. It might not come to mind for them right away, but sooner or later, the thought will occur to them that you might abandon them. That thought will grow into an oversized fear very quickly if you start getting short tempered. Then the real friction starts. As you get short tempered or frustrated, the patient gets more fearful. Responses are replaced with reactions. Tempers flare, Feelings get hurt, and things are said that cannot be erased from the other person’s memory. Trust begins to erode. You can easily find yourself locked in an uneasy truce that is only peaceful because you are both to fearful or tired to fight.

Looking at the memories again, I said before that the chemical poisoning accident I had was twenty-five years ago. But one of the things that happened was that I had a very difficult time trusting caregivers, therapists, doctors and medical personnel. I still do have trust issues. Things that happen like a family member rejecting you or walking out on you will cut deep and leave a bruise on the soul that can take years to heal. When it came to family, my reaction was that if my own wife didn’t want me, why would anyone else? I stayed with friends for several years. At first, I needed a lot of TLC. My body had been badly damaged. The chemical that I was exposed to had a deadly effect on nerves. I went for eleven years before I could feel my fingertips again. Because the chemical was a solvent based product, something as routine and simple as pumping gasoline into my vehicle could trigger a reaction so severe that I would find myself waking up in a hospital again.

Fear is a real issue in the patient’s mind. The patient knows that you are walking and mobile. They know they are taking your time. They know you are not out there living life like you would if they were not in your care. So the other enemy in their mind is an often overwhelming feeling of guilt. There is really nothing you can do about that. The fact is, it will be there. Both of those enemies to your relationship will be there. Fear and guilt.

On your part, the enemy is going to be the frustration and resentment. At least with some. Honestly, when I cared for my wife at first, I was proving to myself that I was not selfish like I saw my ex-wife as. That kind of crusade loses it’s appeal and warm fuzzy feeling fast.  But my wife became my wife because I fell in love with her. Because I loved her I married her. I challenged myself to express my love for her in everything we did together. I would look for ways to do things so that she would see that I was a willing participant in her life rather than a reluctant resentful partner. It is harder to live that way when bills are piling up, vehicles are barely hanging together, medical supplies are eating every spare penny and it is hard to set a schedule because of ever recurring health issues. But we do schedule date nights. Something that can be as simple as reading together, watching a DVD together or playing around with artwork. The point is to do things that are family and friendship building rather than just the constant caregiver/patient interactions.

I was talking to a friend just a few hours ago before starting this article, and I told him that at the point that I go to the mailbox and the medical bills with the dozens of fees, copays and charges total in the hundreds of thousands, that a person has to realize that the important thing is not what is happening, but how we are going through it. I don’t mean that in a fatalistic way, although it is not a very long step down into frustration, fatalism, despair, and depression. But what I mean is that you will not pay a bill or charge at the ER any faster by allowing it to overwhelm your mind with worry. But we can make our life, our living, our day to day existence infinitely brighter and more joyful just by concentrating on the truly important things that are eternal. I noticed that my wife can handle a huge amount of stress, fear, and doubt when she knows she is cherished, loved, and wanted. But if I am distant, short tempered, or noncommittal, she gets agitated far quicker when dealing with doctors, nurses, and medical staff. Whatever feeling we are allowing to dominate us is going to eventually affect our relationship with the patient.

I noticed that my wife can handle a huge amount of stress, fear, and doubt when she knows she is cherished, loved, and wanted. But if I am distant, short tempered, or noncommittal, she gets agitated far quicker when dealing with doctors, nurses, and medical staff.

One thing that made a huge difference for us was acquiring a dog. This is not for everyone of course, but for those who are able, a pet is often a stabilizer in the home. The attached picture is not a photo of Benji, but of another dog acquired earlier. We have a Schnauzer that is almost blind but very well trained. Benji, (I know! We didn’t think too hard to name him that!) has been a great source of comfort for my wife and has provided hours of entertainment for all of the family. Getting a pet is often a good thing, but having a pet that greatly increases your workload is not a good thing at all. So choose wisely. I know of several families in our area that have a lapdog or cat in the household to give the patient comfort and companionship. One lady I built a ramp for and remodeled the bathroom in her home is a cat lover. She has two cats that are absolutely convinced that they are the owners and she is the pet. But the fact is, they are able to get close and snuggle and she feels and has comfort from that. In spite of the fact that many family members live nearby, she seldom sees them and the only person she does see on a regular basis is a nurse caregiver from an In-home Patient Care agency. Her cats have taken on the personalities and there is a very real bond and comfort in that situation. The huge benefit for her is that because the two cats are litter box trained, they are extremely low maintenance. The only real cost is a sack of dry cat food once a month in the grocery shopping.

The death of any relationship is when the practical demands and needs completely replace the tender, familial, friendship based, love based feelings and attention. One of the contributors to the breakdown of the relationship occurs when all the patients’ acquaintances are reduced to medical staff and you, the primary caregiver.

I cared for a Korean War vet over thirty years ago and our relationship was made much easier because he had friends and former co-workers who would come and play checkers and Backgammon with him which would give me some time to rest and take care of me. I didn’t always leave, because I liked those old men who came over every few days. They would joke and kid around and swap stories and tall tales about fish they caught or elk or deer hunts and sometimes they would talk about their part in wars. They were not always talking of happy things, for memories of fighting in the Korean war were not pretty, but they were closer as friends than most families I have seen. The bond and support they gave to each other was more valuable than words can describe.

Again, if the patient you are caring for, sees only you and the medical staff, the patient may get rather reclusive, withdrawn or belligerent. Since you are the only one there, you will bear the brunt of all those bitter feelings they harbor in their heart.

But regardless of the situation you are in, if you do not get some time for yourself to recover and restore from time to time, you will burn out. It is essential that you take care of yourself so that you are able to care for your patient.

I am going to add this last point as a pastor as well as a caregiver. The people who are able to fellowship in a church or synagogue every week weather the storms of caregiving much better than those who do not have a place to go and just sit and soak in some brain and heart food. It is never good to be continuously alone and isolated.

Written by David Waterman
I am a spousal caregiver. I have had a lot of serious accidents in dangerous construction jobs. My recovery has not always been smooth but I did learn how my wife feels when she is bed bound for long periods. With similar experiences in our past I have a better understanding of what she needs to be comfortable. I also spent years involved in Christian ministry and the principles of Christianity apply so well to this life I lead now and give much needed stability when all other things are so often in the air.

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4 Comments

  1. I noticed that my wife can handle a huge amount of stress, fear, and doubt when she knows she is cherished, loved, and wanted. But if I am distant, short tempered, or noncommittal, she gets agitated far quicker when dealing with doctors, nurses, and medical staff.

    I am finding this to be very true with the changes I have been going through. I am there for Ed and he knows he is loved, cherished and valued he can handle a lot also. This part of your post stood out to me as well as many more but this is the one that made a change so far.

    Thank you!

    Reply
  2. Hi David,
    Since our last conversation things have been getting much smoother here.
    .We are learning to really listen to each other and our needs. We both feel better about the changes that have been going on. Seeing each others point of view helps a lot.. I know it cant always be like this because were ever changing and progressing, but for now I feel like a normal healthy person and couple.
    Hope all is well since we last chatted.
    Sending heart felt prayers for you both. Stay strong!

    Peace Marie Grace

    Reply
  3. Marie Grace,
    Glad you found something in the article that resonated with your situation. Just as you say, we are not alone, even though we sometimes think we are. God has people there for each of us. We just don’t recognize them at times. But you made my week with your comments. Hang in there and keep looking up and do stay in touch.
    David

    Reply
  4. Hi David!

    I loved your article. It has helped me in many ways. I’m in a situation that I have MS and my husband has MS. I am his caregiver. I gave my all and could see both sides of the situation for both of us for a long time. But this year I relapsed really bad and was still taking care of my husband. We have been through a lot since we have been together. But after this last relapse of MS. I knew I had to make some serious changes. The stress of being a caregiver who is sick and care for someone else. I have been reading books on taking care of yourself. Put yourself
    first and so on. I just couldn’t figure out how to do it at first. Everything I was reading was with a healthy caregiver. They didn’t have anything out there for me. Where do I fit in.? I couldn’t figure out how to do it all. I would get resentful, depressed, burnt out and always relapsing. I do understand some what how he must feel with his limitations and his progression of loosing all he knew and has to be taken care of and accepting all his losses and no other help for us. But I was also going through the same thing as him. My progression and my losses and grief. It became what about me. I cant do it all and stay happy and encouraging. I did the best I could for 5 years. This year I had to take my life back. I morphed and lost my identity. I wasn’t doing any thing for myself. Took care of him the house and everything. I feel for him, I really do. But I started to do things for me and that were good for my health. I am a Christian so I did have to stop going to church three years ago. I do it at home but its not the same. I started to get massages, go to spiritual retreat. Love nature and has always been a place of filling up for me. I haven’t seen my friends in like for ever and so I started to see them. I do meditation and yoga because it helps my MS so much. My counselor has taught me how to do it honoring God. I love the new me and I feel so much better and my husband and I have had to have many hard conversations. The good part is, that I am taking my life back and able to still take care of him, but he doesn’t like the changes. He says he wants me to be happy and filled up. But it has brought up many feeling and emotion’s and fear on his part.. I am doing my best to help him be ok, but I feel I cant make it all ok for him all the time. I did that for 5 years. He got so dependent on me and even took very much advantage of me. He has admitted it and said he was sorry for it. Its hard for him now, but I have to let him adjust to it. Be kind and understanding but don’t morph back into the person I was just to make him happy. It feels weird for me to have this great change and rebirth but then its the best I have ever felt in my life and my MS is quiet now. I cant feel guilty any more for wanting a life of my own also. The big problem we have here is we have family but don’t come around enough. Friends are basically null for him. He cant go and do any more. He does Facebook and TV and that’s it on his own. Everything else depends on me. So we are doing the best we can. The change has been only a few months now and he is still getting used to it. I cant see myself going back the way I was. The part I am working on now is balance so he doesn’t feel abandoned and get depressed. So that is a work in progress.

    I may have gone on a bit much, but reading your article helped me and gave me someone to relate to. I was also left when dx. By the person who I am married to know. 10 years apart. So I kinda know what its like.

    God bless you and thanks for sharing and the very best to you and your wife also. We have to trust the process and God journey for both of us.

    Take care! Marie Grace

    Reply

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