I lost my husband of 31 years on November 3, 2020, After a battle with cancer that was diagnosed in August 2020. My husband, best friend, favorite person died at home. I know it was a great gift to give him but it was the hardest thing I ever had to do, and I never want to have to do that again. I’m really struggling now that he is gone. I think being a caregiver was a diversion from the reality of what was really happening, and now he is gone And I’m really feeling the void he left. I just miss him so much. I just don’t know what to do to feel better.
Cadu, I did this exact task. Both for my wife and mother. Not a diversion from reality. Really as real as it gets to be there in our loved one's lives as they pass and need us the most. There was an exact moment. I was unraveling. Kay was seeing her last oncologist. The moment was sitting in my truck. Knowing the pivot point was coming. That point of medical care to assisting in her final time in this life. I also knew that to unravel was not what was needed. The total focus was on what we had to do. We have no idea how to do all this. On some level, we perhaps knew also the devastation that was to come. The place we are now. To feel better is to know you did your best in one of the most difficult times of need. We put everything on the line for our person. We are depleted from that experience. Better will happen. Unexpected ways will present. I am sorry Cadu. I know this pain well. If I can lift your burden in any way. Just say so. Best to you at this time. Paul M.
Dear Paul, I just had to write you because, of all the wise words you said, the word "depleted" was the one that struck me senseless. You're exactly right; true, 24/7 care giving became so exhausting for me that yes, I was totally depleted. Some days I felt like a robot: do this, do that, don't forget the wash, the urinals, the dishes. The only time I wasn't doing something for my husband was when I walked the dog (a service dog for him). Occasionally I might meet a neighbor, stand and chat, or just take a longer route because the dog deserved it. That was my social life. (Especially with Covid! Previous to this, we could at least have visitors or doctors to the house.) As Covid amped up, my husband became increasingly paranoid and obsessive about me remaining within his sight, so even the dog walks had to be done quickly. If I met a neighbor and got home 10 minutes late, he'd be angry. My whole world evolved around taking care of him and it utterly drained me. I lost my sense of self, didn't care how I looked, and began to stoop, like a 90 year old woman. (He was alert enough to tell me I looked terrible, ha ha). I began to detest the caretaking - the awful fluids - infections, etc., but I did what I had to do, every hour of every day. Cooked 3 meals a day (good meals - I was a chef), washed and sanitized everything as well as handling all the finances, car care and other normal chores. I lost 40 lbs. I began to have terrible nightmares, followed by bouts of IBS. Oh yes, and I sold our house in NY as well as all the furniture, left all our friends and family behind and drove both him and the dog to Florida because his sister was here and he felt he'd feel better being closer to her and having year round good weather. Well, just getting him in and out of the wheelchair at hotels every night gave him a blister on his foot and once we got here, we were back in daily wound care as he was diabetic and was prone to infections and had previous amputations. Whew. I guess you got the idea. Thing is? Even though I was so burnt out and wished I wasn't a care giver at the time, when he suddenly died of heart failure (in the ambulance in our driveway) I was so shocked and frozen, I could barely function. I felt like I was lost in space. NOW I had nothing to do! No one to cook or shop for! Not even a funeral to plan, because I can't have one with Covid. My point is, even though I was so depleted, so utterly exhausted, I wish I had him here to take care of still. I spend my days with the dog, now. My routine evolves around her. I felt like I lost my husband and my career... I know I will make it through this, but boy, I can't imagine how long it's going to take. Thanks for reading - didn't mean to go on so long. Bess (Aw geez.... I'm new to this and can't figure out how to send!!! LOL)
Bess, I am just blown away by your story. I see we a4re the same age but my tour was preCOVID. It's been a couple of years now but I recall all that was done. I have read here even nurses that took on caretaking and knew how daunting the task is were alone in it. The moving in the middle of it I can't imagine doing that. Your statement of knowing you will make it through all this. That is a powerful point of view. You are an exceptional person!! I admire your strength so much. I think that yes that momentum and now nothing is an adjustment. Our patients could be irrational at times making the task one of tolerance. My hope is that you allow yourself all the time or whatever means to heal. You took both a mental and physical toll. Write if you feel inclined. I have a few pen pals from this site. Mostly how are you? Be well. Warm regards. Paul M.
Paul, I am honored that you replied and warmed by your complimentary review of me. Thank you! Funny though, how I feel so very weak at the moment, and that is a feeling I despise. The lethargy is just as bad. I know it's a grief symptom, but that one symptom alone is just awful. I have so much to do and get very little done. It is especially depressing the next morning, when I once again assess all I haven't done the day before. The house is very untidy, and that bothers me (especially when I can't find something). I've become forgetful. I have to make extra house keys and hide them, because I know I will get locked out one of these days. As Martha Stuart* would say, "a clean and well organized house gives one a clean and organized mind." Well, I know that's probably true, but I can only get what is absolutely necessary done each day and even that becomes negotiable as the day goes on. While I did manage to mostly unpack, nothing is positioned where it should be, there is nothing hung on the walls and my dining room table is a dump zone for stuff I can't deal with at the moment. The only perfectly organized areas in my home are "The Drum Room," where my husband's 2 sets of vintage 60's Ludwig drums are set up and one whole wall of the living room, which houses his large, complicated stereo system (complete with 1970's 48" speakers). He loved his music; everything from Big Band (especially Buddy Rich) to Blues (Coltrane) to Led Zep, Rock Pile, Maria Muldare and Linda Ronstadt, Manhattan Transfer and of course, Stevie Ray Vaughn and that other Stevie...Wonder. I won't get rid of his records or CDs quite yet, but that stereo is going because it's so finicky and involved I can't even use it. In my opinion, it's also pretty ugly and not something I want to sit on the couch and stare at. The drums will also have to be sold at some point, but I'm not ready to deal with that yet because my heart aches just thinking about them. I set them all up for him, positioned them to his direction, only to find he couldn't play from the wheelchair and couldn't balance on the drummer's stool. I was looking for some sort of sturdy armless chair for him, but then he died. I hate remembering how he didn't even get to play them here. It's so sad. For that reason, I leave the door to that room closed. I have not had too hard a time packing up his clothing; most will be donated, some will go to his daughter and son (T shirts they gave him, which he loved). I remember I had to remove his toiletries immediately - the day after he died. I suppose they were the most intimate items, things he used every day, and I could not look at them. There's a lot of work to be done to organize this place; I have to repair the floors and walls from wheelchair damage. I probably have to paint. The rear entrance stairs are rotted. The stain has worn off the wheelchair ramp and needs paint too. The handle broke off my bedroom toilet; an easy fix, but so far it's been broken for 2 months. (I think hubby's ghost broke it - because he never wanted me to use that bathroom, in case he had to. It's wide and set up for handicapped. The first time I ever used it in my life was the day after he died and the handle broke off in my hand! (Don't you hate a spiteful ghost???) Well, there's more to do, but you get the idea. It's overwhelming to me. I don't know where to start. So I don't start. The only good thing about Covid is that no one can come in to see how messy this place is. Not that I have anyone close enough to invite in, except my sister in law and my oldest friend from high school. She just recovered from Covid and lives an hour away. I try to commend myself for the things I have done, though. I have straightened out the finances, put all bills in my name and closed his checking account. I got stuck with a dead battery, called AAA and got a new one. I took the dog to the Vet, as she was overdue. I bought plants to create a garden along a side of the house, but once I started digging out the weeds and grass I pulled my back out, so I hired a guy do the digging. I love to garden, so arranging the flower bed and adding shrubs almost made me feel normal again until I wound up flat on my back with sciatica. I'm trying to keep the plants alive until they finally get in the ground. I just realized this may be too long, especially for a thread. I already deleted what the * after Martha's name was about, as my opinion on Ms. Stewart isn't really important at the moment. If, after reading all this, you still want to be pen pals, let me know. Some other facts you should know: I've had a lot of death in my life, including 2 suicides, the last of which was 2.5 yrs. ago. I was on the scene before the police and it was a horror. I still can't forgive myself for not preventing this, even though he had lied to throw me off track. I have had a lot of other traumatic events, such as witnessing the Towers being hit on 9/11 and resulting losses of people I knew, terrible car accidents where I had to help people, and - perhaps the oddest - being struck by lightening. Although repeatedly traumatized, I thought I had weathered all this fairly well until a year ago last November, when my husband decided he wasn't going to go to PT or try to walk anymore. I felt like someone had thrown a cement block onto my chest. My throat constricted. How could he give up like that? How could he not want to get better? What about our plans to go fishing? The Keys? Sanibel Island? Rent an RV and go to BBQ cookoffs all over the South. And finally, what about me? Was THIS going to be my life now? Lugging around wheelchairs and scooters, helping him on and off the toilet, in & out of the shower? I realized that yes, this WAS what my life was going to be like. I started crying for the loss of what was and what will never be. I was numb. I could not function and couldn't stop crying. By day 3 or 4 I realized I really had a problem, and found a shrink. Got great meds which stopped the crying jags with no other side effects. However, while I had occasional bad dreams, I was now having torturous nightmares. The cement-block feeling accelerated into stabbing, burning pains across my chest. I developed IBS. When my throat constricted, I couldn't even swallow a spoonful of yogurt. The diagnosis was PTSD. I thank God for finding the right doctor. She and I battled the symptoms together and the nightmares decreased and panic attacks grew further apart. Until 9/29/20, when Chris died. The state of shock and multitude of phone calls held the PTSD at bay for 10 weeks, but then I had an unfortunate incident at Christmas which threw me into full blown PTSD again. Usually it's bad for 5-6 days, but right now I'm on day 13 and it's wearing me out. That's why I decided to hunt down an online bereavement group. And it's helped already ... meaning you have helped. Like I said, that one word "depleted" filled me with all sorts of realizations. I am so very thankful for that, Paul. Warmest regards, Bess
Hello both of you, Your words resonate with me. I lost my husband 2 weeks ago - 80 days after he was diagnosed with Stage 4 cancer. Everything was so sudden, and fast. He and I did not have a good relationship, and were more like room mates. But I took charge and gave him the best care possible. His every whim was catered to. I even formulated and created his medication. He was so sick that prescription meds made him ill. He stayed at home until his body started shutting down, and died after only 4 days in hospice. I held his hand as he took his final breath. It was surreal and horrifying. The combination of 24/7 caregiving and witnessing his passing is life changing. No-one could possibly know what this is like unless they have done it. I struggled with CPTSD before this happened, and was in therapy. My husband's illness and death have added to the pile. I know about the nightmares, and the boulder inside. Part of me feels relief to be released from a bad situation, but another part is indescribably torn. No-one should have to go through what he did. Our home has not been maintained, so I am left with significant mess to clean up. I am tempted to walk away and start fresh, and probably will. There are many administrative tasks to be done. How we are expected to attend to legal matters at this time is beyond me. I too have dogs, 3 of them. They are a great comfort during the long, silent hours. I can say without hesitation that I gave him my best. No one cared for that man like I did. My conscience is absolutely clear. Thank you so much for reading, and I wish you well on your journey. Kathy
You all are angels and can relate to the caretaking etc and bless you all and just reading this you have exhausted me. I'm blown away and feel I have nothing to compare to you all but I commend you all and your loved ones I'm sure appreciated everything you all did for them and remember you all matter and they still love you and send their to you. Hugs and thank you for sharing your stories.
