When a husband or wife acts as a caregiver for their spouse, they must walk a fine line between the helper and the nagger. We don’t mean to nag, but it can certainly feel like that to the spouse/patient.

My husband is a kidney patient that has frequently become very de-hydrated. He also does not like the taste of water. It was easier when the nurse and therapists would come in to check vitals and if the blood pressure was low, they would be the ones to remind him to Drink More Water!

Now, I put a 16 oz bottle in front of him and if I dare to remind him that it is dinner time and he has drunk only 6 oz., I am a NAG. However if someone brings him some soup or a milkshake, he is still getting fluids and I am off the hook. If someone else offers these Gifts, he feels it is only polite to accept and partake. My offerings are Sneaky attempts to get him to take in more fluids.

My husband is an avid car guy! Unfortunately, his driver’s license expired over a year ago (2018), officially making me his chauffeur. Now he gets out less and gets less fresh air. Depression and grumpiness sneak in to make our relationship difficult for a while. I have to remind myself that this is a result of his illnesses, not who he is as a man.

As the caregiver, it is my job to prepare a nourishing meal that he will eat. I remind him of his medications and sometimes ask him to get dressed even when there is no special reason. I try to keep a loose routine to bring some sense of normalcy to our lives despite many doctor appointments or emergency trips to the hospital.

Lately, he wasn’t eating or drinking enough. He was weak and needed an aortic valve replacement to give him increased blood flow to all parts of his body. This was discovered a few months earlier when he had an ischemic stroke with no telltale symptoms and no problems except his speech, not slurred but it was a little bit slower.

Hospitals get COLD. I highly recommend you bring a jacket or sweater for yourself if you are staying while the patient receives surgery or any procedures. I usually wrap him in an Afghan or blanket to bring him in because he is very thin at this time. There is usually a waiting room where I can get a cup of hot tea or coffee to help me warm up.

This is two and a half weeks later and he is being put to sleep now for the aortic valve replacement procedure (TAVR). The anesthesiologist came in to let us know of his concerns because Warren had mentioned some chest pain and was given a Nitro pill. It helped the pain but indicated a different concern while trying to manage pain and sedation for TAVR. Coronary artery disease could cause a blockage indicating an open heart surgery. Warren is not a good candidate for this solution as he has already had quadruple bypass surgery in 1999. When questioned as to what he wanted if anything should wrong, did he want or not want open-heart surgery. Warren refused that option due to its futility in his case.

Having to make that kind of decision just before his procedure is quite sobering. I couldn’t make it for him as long as he can decide for himself.

As I sit in the family waiting room writing this, a staff member came in to let me know that they have begun the TAVR and his blood pressure is normal.

Next contact from staff, the new valve is in place and holding. Later, the surgeon reported that all went well and Warren would soon be taken to the recovery room.

With his pain issues and other medical conditions, they decided to keep him 1-2 days. By the end of the second day, his blood work showed low blood count because he had a hematoma from where they removed the catheters. On Sunday, I went to pick Warren up to go home. The discharge nurse had just given him his papers and I had a bad muscle spasm in my chest on the left side. 

His nurse took my blood pressure. It was normal, but my chest still hurt bad enough to take my breath away. I had to call a neighbor to take Warren home because I was rushed down to the ER. I got an EKG, chest x-ray, bloodwork, then I  wait. Everything is normal. Then, I get to go home to be with Warren.

Being a caregiver for your partner can become exhausting and stressful. You used to have help from the patient, doing the typical chores around the house. Now you do double duty, try to stay upbeat, and don’t have the luxury of going out to dinner together to celebrate an important occasion. He is also depressed wanting things to go back to when he was able to do things without running out of energy.

Depression weighs on me like a heavy blanket. Sometimes it even feels stifling, making it difficult to take a deep breath. It is time for a break, but there is no one available that the patient wants around. Just me, his security blanket, his safety net.

I am not complaining, but I am often tired. Household chores are done less frequently until I am feeling stronger.

The upside of being a caregiver is seeing the patient improve, getting stronger with a clearer mind and also more energy. That is what has happened after Warren’s TAVR procedure. He has hope of a better life for now.  He has started doing light workouts at home to increase stamina and strength so he can help around the house again. This also helps me to not be exhausted as much. He had the procedure in August 2019 and it is now January  2020 showing an excellent recovery!

COVID-19! Warren is trying hard to stay out of the hospital due to the virus. Finally, he is drinking his water and he is trying to eat well.

October 17,2020, Warren fell twice before noon due to weakness in his legs. He went to the ER and was sent home at 5 pm. There was no treatable condition. Two days later he had to return because of trouble breathing and possibly pneumonia.  They cleared up his breathing and did a little physical therapy before referring him to a rehabilitation hospital on Halloween. I got to see him once there before they were having to cut off visitation for quarantine.  (A visitor found out that they had had contact with someone that tested positive with the Corona Virus “Covid-19”.) While I was talking to the facility,  I asked what I needed to do to remove him so I could monitor who Warren had contact with him considering the virus. I asked the facility to contact a local hospice due to his deteriorating health.  Hospice sent a hospital bed and Warren came home at 5 pm that day.

Hospice is a wonderful organization that assists the patient and the family in many health situations for free. They have nurses, caregivers, social workers for mental health issues (also for patient and family), and clergy for spiritual support. They have the resources to get all the necessary supplies that may be needed. This care can continue through the time of grieving for up to a year if you want to continue that type of support.

The next day, we celebrated our 11th anniversary on November 7th. Warren continued to decline and after his daughter visited him on the 11th, he quietly passed away a few hours later, on Veterans Day, 11-11-2020. If I had not brought him home, he would have passed away in the facility-unable to be together because of the quarantine.

When you know that a body is giving up, it is difficult to watch when you know the person wants to hold on. This was the case with Warren,  the strongest man I have ever known and loved.

This brings me to the end of my needing to be a caregiver. Now, I can focus on my own health.