You are there listening to the doctor tell you and your loved one that they have a fixed amount of time to live. If you are lucky they can stretch it out somewhat with medication, therapy, hospice care or a few other options. Going home the mind plays the scene over and over. Going through the daily tasks the futility of the whole list of chores continues to rear up and mock you. You might not realize it at the time of the death sentence pronounced by the doctor, but you have already begun to mourn the loss of the person you care for. Whether a paid care provider or a family caregiver, you are anticipating the loss and death of the person. It colors everything that you do from that point on. It lurks in the back of the mind and sometimes at the most inconvenient moment, the tears come. Not that there is a convenient time to break down. There is always something that needs to be addressed immediately, if not sooner. But there it is.
I have found myself in that place a few times. Then as if by a God sent miracle my lover is given a new grip and an extension on life. The first time that it happened was definitely the toughest time. It was hard to comprehend that a seemingly minor infection could threaten kidneys and internal organs so quickly and threaten brain damage due to high fevers. The feeling of helplessness is always along for the ride. So too, the depression and anxiety that stems from worrying about whether you are dressing the wounds properly, the fear of introducing another infection or bacteria into an open wound, and the constant waking to check and make sure that you hear that slow gentle rhythmic breathing that indicates everything is still okay during the sleep time.
This is a feeling and condition that you cannot explain or properly describe to friends, other family members, or church members. It is a place that feels so lonely that even though you are surrounded by doctors, nurses, possibly church members and pastor’s staff, you feel completely alone and solitary. You wonder if anyone understands. If anyone wants to understand.
So what do you do? How do you handle the stress, the fear of loss, the doubts and the anxiety? How do you handle the feeling of isolation and loneliness? The fact is, most people don’t handle it very well if at all. The largest obstacle, the biggest enemy is the chronic or clinical depression that settles in your heart, mind and soul, that overwhelming sense of defeat and futility that so envelopes your mind and feelings that you are on auto-pilot. Not really thinking anymore but just going through the motions. This is a very dangerous place to be. Depression shuts down our ability to see things clearly and rationally. This is where mistakes can be fatal. And if not fatal, they can be costly in time lost and financial costs too.
I have been a caregiver to more than one person in my working life. Early in the time I lived in Albuquerque, NM I took a year off from all work and efforts in ministry and cared for one of my closest friends. Ervin had melanoma Carcinoma. He had tumors forming in his body so quickly that the medical staff treating him could not keep up. One tumor on his shoulder ballooned so rapidly that it looked like a second head sprouting from his shoulder next to his head. Two others formed in his brain cavity and pushed his skull into a different shape as they grew. Still others formed in and on other parts of his body. He was given massive doses of pain killers to keep him from suffering. He refused to take them. He would only take enough to deaden the worse of the pain.
Ervin had been a member of a church I had pastored the previous year. For the entire nearly four years I was in that pulpit Ervin would come and sit in church and during the week he would invite me to come to his restaurant in a neighboring town to eat on his tab. He often said while he was slowly dying before my eyes, that he wanted me to get the mourning out of the way so we could talk of the really important stuff. We often sat into the night talking of science, theology, creationism versus evolution, construction practices, politics and a wide range of other topics. We both read extensively and we both saw that we could always learn more. We would be in the middle of a conversation and he would interrupt with a reminder that he didn’t have long to live, so get to the point of the conversation. He said he wanted us to say our last words about him when he was alive, because when he was dead he wouldn’t be there to hear what we had to say. He thought it important to make sure that peace was made with everyone before he left us.
He asked me to watch over his wife and family during his final days. It was assumed he would be out of his mind with pain by the time he passed, but he was not. He was alert and coherent right up to the moment when he stopped breathing in my arms as I transferred him from the bed to his wheelchair. One moment he was talking about the drudgery of going to doctors and the next moment he took a deep breath and died. This was a new experience for me, to be there at the very end holding a friend when he slipped into eternity. But it was the most peaceful of all the times I have dealt with funerals. I arranged for his funeral on behalf of his family. We held it in the First Baptist Church in downtown Albuquerque. I expected some friction from family members because not all of them got along so well, but the funeral went very smoothly, and afterward, even family members who did not get along with one another were at peace.
This was a huge contrast with other caregiving situations where no one acknowledged the impending death of the invalid. I saw not only the danger of depression at that point but of denial too. Denial is so much more difficult to overcome. By it’s very nature, denial is a refusal to see or accept reality. Mourning is so much more difficult and deeper and has a much greater negative effect on the family. I have heard quite a few people over the years lay claim to a miracle. I have heard people espouse the virtues of positive thinking. I have heard people cling to statements by doctors that there might be a breakthrough and new medicine to combat the issue. I have also noticed that the people who hold on to unrealistic expectations when confronted with reality are deeply disappointed and very defeated and depressed after the invalid passes.
For the people who are in Bible-based, Baptist, or Word-based churches, death is not a terrible end to a life. It is a transition, a stepping through the veil to a new life and body that will never grow old or hurt. Of the last four funerals I have attended that were honoring church members who were friends, the theme has been one of celebration for the departed, that they have received their reward. They are no longer suffering, their pain is over, their race is run and they have inherited the crown of life. We do not mourn as others do who have no hope, and even though we miss the physical presence of the departed we know that one day we will meet again and be forever joyful. When we mourn, we mourn that we could not have done more, could not have shared more and we are reminded that we are all going to pass and so we try to live a life that will convince people around us of the hope we have.
When we mourn, we mourn that we could not have done more, could not have shared more and we are reminded that we are all going to pass and so we try to live a life that will convince people around us of the hope we have.
Our funerals are celebrations of the life lived by a friend or family member. We share the good times we had together, the challenges overcome, and the obstacles removed from our paths.
My mother passed away in 2008. Her heart had been under a strain for at least a year. She had lived through some terrible accidents in the past, and she was ready to go home. One night she asked me while being cared for at my brother’s house if I thought it would be okay if she could go home to Heaven. I told her it was okay and to answer Him when He came for her with a yes. When she passed on, my sister in law Kathy, told me that she asked her the same thing and then just said okay when Kathy told her to go ahead. She was assured that her children were well and would not be abandoned (A mother to her children to the very end) and Kathy said she just went home.
Religion does not give that perfect peace. There are many religions in the world that demand that the subjects die for their god. But many doctors I have talked with assure me that the great majority of people who go to their final rest peacefully sometimes gladly and eagerly are people who have a relationship with God. That I think is the greatest help in the passing of a loved one who has required caregiving. There is a knowing that there is a rest, a place of peace waiting. Mourning is greatly magnified by fear of the unknown and the sense of total loss. But as an ordained pastor/evangelist, I can assure my listeners, that we are not hopeless, we are not helpless, we are not alone, we are not going to destruction, but we are entering perfect peace. Those who do not have this hope in themselves wrestle with huge and overwhelming fears of the unknown and the finality of it all. One particular doctor who had witnessed numerous deaths in the hospital that he worked often said that the patient would suddenly express awareness of Heaven or of angels and some would say the name of Jesus with such peace and joy that he would be greatly affected by the emotion.
So for us who are with one another in fellowship, in worship of God, in the Bible based Christian fellowships, Death is a graduation. Mourning is not the same for us. It is an experience that is part of living. Just a step into the next life and for those of us who are alive and remain we have a great anticipation to join them who have passed one day.
Mourning starts with a diagnosis. Anticipatory grief it’s called. It’s very real.
I pre-mourned my moms death for about 2 weeks. It was actually harder than her death and funeral.
My husband of 40 years was given “weeks” when he was diagnosed with a rare, aggressive blood cancer 3 years ago. He is home, doing well – he walked 1 1/2 hours today- and will live with debilitating effects of his constant chemo for the rest of his life. IT is so difficult to truly enjoy each day, when you know that this disease will kill him. It’s not the question of “if” but rather when.
I agree, the Dad I knew & loved left years before his passing, he had no quality of life but still every now & then I could say or do something to bring his old smile back briefly ❤️
This I can certainly vouch for and it takes some very different turns, those which relate to mourning and grief, such as anger, fear, sadness, tears, frustration, tiredness and exhaustion and certainly a deep depression that is for the most part suppressed.
My husband of 49 years has had ALS for 13 years. I burned out years ago. Now on auto pilot, going through the motions as my own health continues to fail. I want this to be over. I think he is going to outlive me.
It’s a hard thing to go thru. Just lost my mother after years of solo care taking. Hang in there Lee!
Yes it does!
So true. After strokes and hospice, Mom is simply not the same person. It’s hard to be with her, but I try.
Does anyone know of any places to find good quality private hire home aides? Ttrying to find the best care possible. It’s hard. Can’t use agencies.
Do everything you can with and for her. I promise you won’t regret the time love and care you give her now! Just lost my mother and regret missed opportunities
My Caregiver support group called it Anticipatory Grief. So true. 🙁
I HAVE BEEN WATCHING MY HUSBAND OF 42 YEARS SLOWLY GO DOWN, HE HAS ADVANCED PD, SUCH A NASTY LONG TERM ILLNESS.
Debbie, wow we too have been married 42 years and mind just had his second liver transplant in a year. Things going okay with this transplant but he has complications.
I WILL PRAY FOR HEALING.
Parkinson’s here for 13 years. I relate
It’s sad how many people are unaware of this… but it’s completely true and it starts even when someone is simply diagnosed with something, then starts gradually changing and becoming someone they weren’t 🙁
Yes it does!
The long goodbye. I grieved for my dad every day for over 2 years while he was bedbound and slowly failing. It did give me opportunity to tell him and show him how much I loved him. I was sad but at peace with zero regrets when he passed.
Conversely, when my mom passed suddenly a year later from an error during a simple day surgery, there was no goodbye. I’m still grieving.
Thank you David again for another inspiring post. My husband and I think and feel the way you have. We are both Christians. We know where were going when we pass. We are not afraid. I was at first. But as the journey of caring for my husband Ed continues. I have more peace. I will be ok afterwards. We are living our lives to the fullest. We will have no regrets. I have had much grieving time through the past 4-5 years. Today I have peace and no fear. It will be a celebration of live. We are actually having a living celebration of life party in October. We don’t know how long he has, but were excited to bring everyone together, while alive and have a memorable party. I will be ok. My faith and my God tells me so and I wont live with guilt. I will live on with all the love and joy we shared and memories and no regrets. I appreciate your reassuring message. I love your words to Linda also. I will take your words and put them in my heart. They are sweet and true! Thank you again. Marie grace
Linda, Thank you for the feed back. Unfortunately humans tend to take the path of least resistance. The reality is that in every family there are those to take more than they give. And other family members that tend to give far more than they get. It is a fact of life. I used to be very frustrated with the way people acted. the one day I heard a comment that changed my reaction. The fact is, the person who has ignored the need for help is oblivious to how you feel. The only person your feelings is pulling down is you. One day I realized that people who I thought should be there sale through life treating everyone with the same actions and responses. The fact is, the only thing you may have going for you at the end of the day is the satisfaction and a clear conscience, that you did the right thing. And that is far more valuable in the night when you lay down to sleep than all the extra things the selfish and inconsiderate people took without paying their just dues. It does not seem like much, but self respect and the clear conscience and the knowledge that your love was not just in word only but that you turned into action is the greatest gift you could ever give to your mother. Hold your head up. There is a reward in the mind and the soul for character and integrity.
Thank you David! And you’re right. My conscience is clear … I can sleep at night … I followed Mom’s wishes …
Beautifully written. Thank you!
My faith kept me going while caring for my Mom. Through His grace, I accepted I couldn’t stop Alzheimer’s. I learned the path it takes (and it’s different for everyone) and tried to be pro-active about Mom’s 11 year decline. We got funeral pre-arrangements made and paid off, POAs in place, and I managed her doctor appointments, meds, finances … you name it. The year before she passed, I took her to see her family 600 miles away and the following year surprised her on her 85th birthday with a party that all of her children, grandchildren and all but her 2 youngest great-grandchildren came to. We hadn’t all be together for over 12 years. Not because of geographical distance … there were other issues.
I tried desperately to heal the family, which I finally figured out I couldn’t do all by myself. I asked repeatedly for forgivness, extended forgiveness, pleaded for counseling, sent updates and asked to share caregiving with my siblings, who said they would but for the most part didn’t. Examples? My sister lived 3 blocks from Mom, worked at Kroger, yet I had to come 50 miles (1 way) to do her grocery shopping. My brother would get something done around Mom’s house if I established a deadline of throwing something out. At the last, though, they took her for radiation treatments when bladder cancer was diagnosed.
We are not God and cannot prevent or cure illnesses … we can’t stop death. Accepting that final outcome as inevitable is heartbreaking, but necessary if we hope to keep “what if’s” from driving us crazy. All I did was with that thought in mind … to do what needed to be done, keep my siblings informed, and accept whatever help they would follow through with … no matter how I felt. I know … really KNOW … I did all I was supposed to do for Mom … all that God put on my heart to do … and there is peace in that knowledge.
Mom went into the hospital last June – on my sister’s birthday. She passed away at 1am the next morning – on my brother’s birthday. I don’t know if there’s any cosmic significance to that or not – it’s just freaky.
For all the caregivers out there who feel guilty about being human … DON’T.
Guilt is NOT an option!