No Regrets

I do not begrudge the time given to being a caregiver to my mother in-law and then again for my mother.

Each time my husband and I totally reinvented our home and schedules. I left jobs that I enjoyed each time in order to stay home with them. We altered plans for vacations, for practical reasons as well as monetary since I was not working. Our children came to visit us to accommodate their grandmothers (and their parents), we seldom made the trip to visit them. Even a local visit would tire Grandma and she needed a day, or two, after to rest after traveling through traffic.

All worth it.

There are so many small things I would have done differently. I would have made more of her favorite foods. I would have made her laugh more. I would have painted the bedroom sooner. I would have driven her past the old home place more often.

I would not have changed any of the important things: time spent with her; meals shared; shopping adventures to find something she knew she needed but could not remember what it was; or, playing “charades” when she could not think of the word needed to finish her sentence. So many times my mom would say something to the effect of, “I am all out of that flat thing that I use every day. We need to get some today.” (It was butter.) We had so many laughs after our charades game.

I look back at the time spent with these two women and I am just now beginning to see the effects it had on me. I have changed, mostly for the good. I have learned to enjoy the moment I am in a bit more. I do find myself sitting and contemplating more and not always being in motion.

LESSON: Do not get lost in “caregiving” and not enjoy the time together. Soon the task will be over and all that will remain is your memories, make them sweet while you can.

What Is Taking So Long?

Ever hear the saying, “One step forward, two steps back”? This sums up how I have been doing since mom passed. At first, I rationalized my exhaustion.

I slept in a chair for over one month. Never fully surrendered to deep sleep, always listening for mom. We had holiday plans already in the works prior to mom leaving us so we held to the plans. Each moment was accounted for during the holidays. Fun visits with family. Time with babies. Multiple meal plannings and welcoming visitors. Moments I will treasure forever.

Then the house went quiet and for two weeks I only did what was absolutely necessary and slept the rest of the time. I am still exhausted over a month later and yet unable to sleep through the night.

I have had friends say that it is depression. I am not sure how depression feels but I am not sure this is it. I am sad mom died, yes; however, it is not all consuming, to the point of being excessive, in my untrained opinion. I am just bone-aching tired and consumed with my next big step – finding a job. I have no concentration or focus. Therefore, I think I will head back to bed.

LESSON: Do not rush through your grief simply because others think you should be “over it already”. It is YOUR grief so only you will know when you are ready to move forward.

I Hit the Wall

I have been in bed for two weeks due to bone aching exhaustion. It seems to happen to all 24/7 caregivers. Your every thought is for your patient, who is usually a loved one. Every decision is designed to nurture your patient. If smells bother them, what you eat and cook is based on their sensitivity. You have to plan your own showers, shopping trips and doctor’s visits based on when you have someone to be with your patient. Every waking moment is about your patient.

Once they pass on, there are so many important things that need to be tended to and just as many mundane tasks that need your attention. All the rented equipment needs to be returned. Calls to the pharmacy to cancel auto refills. Cancellation of future appointments that were on the calendar for the patient. Funeral arrangements finalized and services attended. Obtaining the Certificate of Death, multiple copies will be needed. Many fiscal tasks that also need your attention, many requiring a Certificate of Death and always accompanied by “red tape”. The final task is getting your house put back in order.

Mom died just weeks before the Christmas festivities. Family gatherings were already planned and airline tickets to come see us were already purchased. I was decorating the house, preparing dinners for the family, spending time with the grandbabies and out-of-town family. There were lots of laughs, special moments experienced and times of sharing memories of mom. Not one moment was wasted and I would not trade one for a wink of sleep.

But then the house went quiet. Guests were gone. Celebrations were over.

It all caught up with me and my body shut down. My sugar skyrocketed and I barely had the strength to brush my teeth. Just standing upright exhausted me to the point of needing a nap.

When you are exhausted, that is when all the doubts haunt you. Could I have done something different as a caregiver to lengthen her time with us? Did she gain the right nutrition at my table? Did I provide enough opportunities to stimulate her mind? Did I give my all?

I am not sure if, or when, the demons from “The Land of What If” are ever satisfied or defeated. Those demons still trip me up from the time I was caregiver for my mother in-law. No matter what you think you did well, you still wonder if you could have done something different or something more. I suppose that is where the “care” in caregiver shows its true depth and the doubts cannot be avoided. However, to know I was the one that took care of these two women, instead of trained medical personnel, was still a blessing I would not have missed.

LESSON: I believe being a good caregiver can be summed up in one statement: The more you give the more your get. It may have brought pain and grief in the end, but I am better for it – exhausted but better.

Goodbye

“You can go, Mom. Our love goes with you. Everything that was important in life has been completed and will go with you. Nothing important is left undone. We will miss you but it is time for you to truly live. It is a beautiful day to travel Home.”

I said those words over and over to her. In a very real way, I said goodbye to her several times each day. I may never know why her departure took so long. I know when my Grandmother lingered for over a year in a vegetative state, the reason for the delay came to light after her passing. Her nurses came to the funeral home and said that their eternity was changed because of her. They watched how my parents came every day to see her. They brushed her hair, caught her up on family news, sang to her and read aloud from her Bible, even tho she could not respond and appeared asleep. The nurses were watching and listening. Mom’s purpose for lingering may never be known.

The aide came today to bathe mom, which included washing her hair. Mom’s breathing was very raspy (sometimes called the “death rattle”) and I think the aide knew mom’s time was close. I kept talking to mom the whole time. I told her that she was primping and “getting her pretty on” and it would be a good time to go see her Sweetheart. The aide was gone only a few moments when mom expelled her final breath. The time she died coincided with that date she was born. That small element of her story has brought me so much peace and comfort. Scripture says that God knows all and nothing can surprise Him. He knew the day she was born when she would die. That brings me so much comfort and peace.

Just some clarification, I have not “lost” my mother. I know exactly where she is. She has not “gained her wings” nor become an angel. She is a child of the King of whom God breathed life into (there is no evidence that He did that when creating the angels – or any other creature). One day I will be together again with Mom, Daddy and all those who have gone before me to claim their inheritance in Heaven.

As her daughter, it was so hard to let her go. As her caregiver, I was honored to be with her along her journey Home. As her sister in the Lord, I am elated for her and very jealous

LESSON: Death is the end to face-to-face conversations with those we love. However, for those that have been adopted into the Family of God, it is the beginning of eternity around the Throne of God. My prayer is that you will join us.

https://billygraham.org.au/how-can-i-know-for-sure-ill-go-to-heaven/

Still Her

I love my mom. She was always a strong woman. Some had issues with her strength and at times it got in the way of her relationships, sometimes ours. She received the nickname of The General and I think, secretly, she enjoyed it. She knew what she wanted and how to get it, for the most part. She is a Child of the King, she had multiple talents and led with her heart in all areas of her life. But she was decided, and once her mind was made up there was no changing it.

I truly believe her passing is speaking volumes of who she was in life. She stayed busy and active until just a few days before lethargy took over, which prompted a doctor’s visit. It was a sudden dive after that.

She went in and out of a responsive state when my sister was here. My sister was able to say her goodbyes to mom. A week past and more family arrived. She rallied a bit when my brother and sister in-love were here over the weekend. Her eyes opened enough that we could see the soft blue that has become so familiar to us all. We sang, spoke to her and read scripture aloud. We encouraged her to go on and meet Daddy. We assured her we would be alright.

And yet she still remained. She will not do anything unless she wants to, only God overrides her will. Any movement to care for her causes her pain. She refuses medication that will ease any discomfort she has. I have repeatedly lied to her and said it is her stomach medication, something she has never refused. That is the only thing that will convince her to unclench her jaws to accept the medicine. My goal is to make her comfortable, take away any pain she may have and out wit her when needed.

Being a caregiver, walking a loved one Home, is the hardest and most isolating thing I have ever done. So many emotions. So much conflict. I need to eat, shower and sleep but do not want to leave the room. I want her to cross into Eternity where she will be whole and with Daddy; however, I am not ready for her to leave.

LESSON: Give up your expectations. This experience is about your patient and not you. They are the engine and you are merely the caboose.

Tips for the Caregiver

First, I want to make it very clear that I am not a nurse or any other type of healthcare worker. I have had no formal training as a caregiver. The tips I am sharing below are just what I have learned in my experience as a caregiver in a hospice situation. I had no hands-on caregiver duties when my father died, he was out of state; however, my mother shared many tips she learned along the way when I would visit.

CHOOSE EARLY

Do not wait until you need hospice to choose a hospice provider. Do your homework early. Decide if you want in-home hospice, hospice via the hospital if available, or a hospice facility. There is no “right” choice, it is what works for the patient and family. Once hospice is needed, you will already have a provider in mind and will not have to walk blindly into that decision.

BED PLACEMENT

If you are doing in-home hospice for a terminal patient, find a way to put the hospital bed in a public room. Furniture can always be temporarily moved. Do not put the bed in their bedroom, etc. Having them in a prominent place in the home allows you to stay connected to the patient and to those coming to say their goodbyes to same. Since hearing is the last of the senses to go, the patient is also able to be part of the visit even if they cannot or do not contribute.

I have visited family and friends that were set up in their bedroom. It was awkward to go into their private space to visit. I felt like a trespasser. Also, being in the bedroom limits places for guests to sit. This means visits will be short and the caregiver will not be able to benefit fully from the visit.

NOTE: Most hospital beds used in the home are Twin XL. It is best to have at least two sets of sheets ready for when the patient comes home. If you will use disposable bed pads (washable pads are available and can eliminate a “draw sheet”), have three or four additional top sheets to use as a “draw sheet” under the patient (used to roll the patient, pull them higher up in the bed, etc.).

SET UP A STATION

Have a place close to the bed for items that will be needed – diapers, wipes, lotion, bed pads, etc. It can be a table or moveable shelves, I believe it best to not use closed storage, if at all possible. Having it easily accessible as well as readily seen, by the nurse or aide, is most helpful.

A separate station to keep medications is best. A table that allows you to keep them out and available (if children are in the house keep medications out of reach or in a locked box). It is best if you can sit to crush pills, log what medications you are giving and the time given. The timer on your phone (or a kitchen timer) will be most helpful in reminding you when to give the next dose – fatigue can easily cause you to skip a dose.

RECRUIT SOME HELP

You may not be able to have someone with you all the time but find someone to help you. They can be available to cook/bring you food. They may just come to stay with the patient long enough for you to shower and change clothes. They can also be a great distraction for you. Your in-home hospice provider will be able to assist you if you do not have family or friends available.

My husband was invaluable to me. He checked on me often, he was working from home. He brought me food and little treats. My sister came in for a few days, as did my brother and sister in-love. Even if they did nothing, which they were very helpful, just having them here was a great diversion and a balm to my weary body and mind. You may not feel like entertaining but allow people to help you. Do not rob others of the blessing of helping you and having final moments alone with the patient.

USE A COVERED TRASH CAN

Most hospice coordinators will advise you to get a trash can with a cover. As the body starts to “shut down” the ammonia smell gets stronger.

We had a stainless, foot operated trash can next to the bed. The lid closed tight. I have found that when the lid goes up, to deposit a soiled diaper and/or bed pad, the smell is overwhelming and lingers. Have smaller bags, like grocery sacks, next to the trash can. Put the soiled items in the small bag and tie it closed prior to putting it in the larger bag-lined can. Having an automatic air freshener near by also helps. However, the patient may be sensitive to smell so choose a mild scent.

STAY CLOSE TO PATIENT

If you are 24/7 caregiving or just the overnight caregiver, stay close to the patient. Have a recliner or sofa near the patient. You want to be able to see the chest rise and fall and be close enough to observe any facial contortions that may indicate pain. Again, keep in mind that hearing is the last sense to go. Talk to the patient. In a gentle tone indicate that you are going to move their leg, check for fever, administer medication, etc. What you do not want to do is startle them. When you are leaving the room let them know. Some patients may be afraid of being alone, let them know you are just stepping out to go to the bathroom or get a glass of water. To the contrary, the patient may be waiting to be alone to release their final breath. To some it may sound morbid, but I would say out loud that I was leaving the room and “if you decide to go before I return, remember I love you.”

BE TRANSPARENT

I do not encourage sitting around the bed of the patient blubbering, it will only cause the patient undue stress. I do think it is important that your sorrow is shared with your patient. There are mixed studies and beliefs on what I say next, it is my strong belief and how I choose to interact as a caregiver. I believe in giving the patient “permission” to die. Studies point out that many, who loved hard in life, want to be sure that those they are leaving behind will be cared for.

When Daddy was near the end of his journey, I promised him that I would watch out for Mom. I said we would take care of Mom in a way that would please and honor him. I said she would want for nothing. My siblings did the same. When I voiced that to him, even with him being non-responsive, visually I saw him relax in that moment. I have honored that promise and feel it is fulfillment of that promise that I was blessed with walking mom Home.

FINALLY

Allow yourself time to grieve. Once the last breath is expelled the “business end of dying” takes over. If you have not made previous arrangements, you will need to decide which funeral home to use, cremation or burial, the particulars of that choice, etc. Shortly after that, you will start getting calls for payment of hospital bills, etc. You may not have time to mourn because you are so busy but you need to mourn for your health’s sake.

LESSON: The more you do in advance, the easier it will be in the end. If it is your responsibility, choose a funeral home in advance, fine tune the particulars as much as possible. You will be thinking much more clearly in the early days of hospice as opposed to after the journey is complete.

Emotional Break

My entire life I have held my emotions tight. Even those closest to me would testify that they have seldom, if ever, seen me cry. I will get tears in my eyes but not truly cry in the presence of anyone. Once, when I was very young, I was told that crying was a sign of weakness. Since then, I hold my tears in or leave the room to let them fall.

Here is the fact of care giving, you are going to have an emotional break at some point when you are a care giver to someone you love. The exhaustion that occurs as you care for another will cause emotions to stay much closer to the top of the escape valve.

I do shed tears when the nurse comes. She is so sweet and always takes time to ask how I am doing. She asks questions about mom when she was living actively. That simple act of kindness does cause me, an emotion-phobe, to shed a few tears.

Yesterday, however, the reality of what the future held hit me hard. I cried without abandon and felt lighter afterwards. I cried into a pillow so I would not disturb mom because I was uncomfortable leaving her alone at the time. I “allowed” myself to be vulnerable and the earth did not stop spinning. That is not to say that I will now become a “weeper”; however, there is now that possibility.

LESSON: Allow yourself to feel and even to grieve while caring for a loved one. It is cathartic and unlocks the heart so you can feel more deeply for your patient. It actually will make you a better care giver.

What I’ve Noticed

I am not sure how all hospice protocols are, all I have to draw on is my own experience. Once mom came home I had hospital beds, oxygen and medications delivered to the home. There were instructions on how to combine medications to work on the symptoms she was showing. The oxygen is for when her breathing seemed “off” and I was shown how to operate the machine. There are mouth swabs that need to be moistened but not too wet. The bed has different positions and optimal ways to position the patient on the bed – with all the markings on the buttons wore off. I was given so much information all at once. It has been a couple of years since I went through this with my mother in-law and obviously I have not retained much of the particulars.

The reality is that I do not know what to do or when, how to decide which medication would work best at the time, if she is comfortable or just too exhausted to care. The nurse came back and walked me through it again, slower, so I could take notes. I feel more capable. However, what I have noticed is that mom’s restless legs normalize when I held her hand. The simple act of sitting next to her stabilized her breathing. Talking, reading scripture or singing to her brought a peaceful expression to her face.

Normally, sitting in a straight back chair for long periods of time would leave me stiff; however, while tired, I was able to be fully active and functional each day. I did have a stressful few moments when mom choked on phlegm that she was too weak to clear from her throat. In that instant my mind cleared and I remembered what the nurse said. I got mom turned on her side and she was able to breathe clear. Then I got her comfortable and put the pill for “secretions” under her tongue. She has been fine since.

Caring for someone you love is not a burden or an arduous task, it is an outward sign of the love you have for them. It is called “care giver” for a reason – the title is self explanatory. If the love and care is not present, can you really call yourself a “care” giver? Would it be called something else if you did not care for the patient?

LESSON: Do not let fear of the unknown, or of death itself, rob you of the blessing of walking a loved one Home. There is no greater honor and it eases them in a tangible way.

Helpless

There is no other time in my life that I felt as helpless as I do now. Sitting by the bed of a dying loved one is gut wrenching. I have no doubt that she is going to a better place. At this time, she is in no pain but the way she looks at me rips my heart out.

She can talk, occasionally, but not continually. Rarely now she will summon energy to reply when family calls, but responses are short and words are hard to find. I will ask if she is thirsty and she will nod or shake her head. Sometimes she will say she needs something but, due to Alzheimer’s, does not know how to ask or even what she wants. Usually it is toast, her normal go-to when ill, but she can only handle a bite or two now.

It is the pleading look in her eyes that breaks my heart and brings tears to my eyes. It is as if she is begging to go Home. God’s timing is perfect, I know that in my soul. She is ready in her soul to leave this world but her body seems to be holding on.

I keep looking towards heaven begging for Him to take her. She was so strong and self sufficient. Her desire was to go quickly and not be a burden to anyone, especially family. I do not consider caring for her any form of a burden. However, if I were in her place, I would be heart sick to just be hanging on.

As I was tending to her in the wee hours, I asked her “Is today the day you go to heaven to see your Sweetheart?” Today she said, “Could be.” But her breathing is strong so I am doubtful.

LESSON: Many people, because they care for you, will give advice on what to do or how to do it, ignore it. Follow the medical staff and your gut – especially if the patient is a loved one – you know the patient’s preferences best.

The Long Goodbye

This is the term given to Alzheimer’s Disease because you loose a bit of the patient every day. Each day you say goodbye to another part of them.

Mom was admitted to the hospital due to lethargy. When a UTI was ruled out for the cause, the barrage of tests began. No infection to be found. Then the rolling fevers began. Still no answers. One week, to the day, she was released to in-home hospice with no diagnosis. My sister flew in that night. She had already planned to come for Thanksgiving, the timing was perfect. I was able to lay in a bed and sleep, a task I had not done in a week, while my sister cared for mom.

There has been no major change in mom’s health. She sleeps over twenty-two hours a day. Today her speech is a bit slurred, when she is awake to talk. I am not sure if the slurred speech is due to fatigue or if she has had a TIA (“mini stroke”, which she has had in the past). I am learning that dying, just like Alzheimer’s, does not have a set pattern. There is no check list so that you can prepare for the next step in the process.

I keep reminding her that her children are all safe and will do well. That we will take care of the babies in the family and not ignore the “old folks”. I encourage her to go on to see her Sweetheart, my daddy. She smiles whenever I bring him up. It is NOT that I want her to die, it is because I love her. The ache in her heart since daddy died has increased over the years. Of late, he is all she thinks of or talks about. Everything reminds her of him. Because I love her, I wish her well and am doing what I can to help her say goodbye to “here” and hello to “forever” – no matter the pain it causes me.

LESSON: Not everything is about you, nor is it all about the patient in your care. Learn to recognize the moments that are and make them as full and meaningful as they can be.