Colonoscopy Brings Complications
I am 81 years old, but active, strong and healthy. My DH is 86 and diagnosed in 2021 with Alzheimers. He has remained gentle and sweet, very helpful and in good physical condition otherwise. Just doesn’t remember 5 minutes ago. I am his anchor and he tells me that all the time. So now I have had a colonoscopy on the suggestion of my doctor. It was on July 2 & thought I don’t know all the details, he did find a “mass” that he suspects is cancer. Until the pathology report comes back, and results of the Cat Scan, I can’t know the scope of this. What I do know is this: we have been thrown a huge curve ball. This is something I have considered and feared all along: what if something happens to me (although that didn’t seem likely because of my good health). But the thought was always there. I do not have any symptoms of the cancer but that is normal in many cases. My blood work came back fairly normal. So there is some optimism in me, but in any event, it probably means surgery. I am not concerned about myself, but very much for DH. Anyone else have this kind of monkey wrench thrown into their situation? Thank you.
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I’m not in your situation but I think of “what will happen if something happens to me “ all the time, don’t have answers worries the shit out of me.
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I had a health scare last summer which made it difficult for me to ambulate for about a month. It made me realize that me providing solo care for my DW is in essence a "house of cards". I would like to say that I worked out a plan B in the case something happens to me but I haven't.
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It’s a question that lurks on the sidelines. In my support group we’ve discussed this. While the fear is always there, I guess we think it won’t happen. But now it has. But I am waiting on pathology report, CT scan results etc and will have a clearer understanding of what lies ahead. Fortunately colon cancer is one of the “better” ones.
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I think in the daily course of dealing with our beloved’s Alzheimer’s we can’t or won’t take the extra time/energy to nnnwork out a plan B. We think “Nah, that’s too far fetched. Got enough on my plate”! I will blame it on human nature!
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Sunnyside, I went through surgery to remove a huge polyp from my colon when DW was about stage 4. The polyp was precancerous but too large to remove via a colonoscopy, they removed 9 inches of my colon. While I was in the hospital for 3 days a combination of family and friends look after DW, fortunately she was at a point where she did not need a great deal of care mainly making her meals and providing companionship. Since it was major surgery I could not do much around the house for the next month and DW was beyond the point where she could do much of any housework.
The bright side of my story is that I used this situation as an excuse to bring in outside help. I had previously suggested bringing in someone to help but DW was opposed to this idea. So with this surgery looming, I told her my doctor was requiring that I have a CNA come in a couple of days a week to help me recover from the surgery. Since the caregiver was coming to help me she was OK with her coming in. The agency/caregiver where aware that I was using this fiblet to bring someone in and they were actually there for DW, everyone played along with the fiblet. By the time I completely recovered DW had bonded with the caregiver and she was with us for over 4 years until I placed DW. I wish you the best as you navigate this health situation.
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Wishing the best possible outcome for you, the uncertainty is what is so nervewracking. I was abruptly hospitalized with pulmonary emboli last summer and it took six months and more for me to recover. But my partner was already in memory care.
You need a backup plan in short order. Even if the tumor is resectable, intestinal surgery is a huge deal, and you must anticipate the possibility of a colostomy at least temporarily, and possible chemotherapy. Best scenario would be that it's resectable, hasn't spread, and won't need chemotherapy. Even then you'll need a lot of help.
I hope SDianeL sees your post, she faced this with aggressive breast cancer last year. Please keep us posted as you know morr.
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This why every caregiver needs a Plan B. If you are too overwhelmed to research options, perhaps you could delegate this task to an adult child, sibling or close friend. I had a shovel-ready plan for dad if something happened to mom and dad became my responsibility.
I have a friend who had a subtotal colectomy on the 28th related to polyps and primary immunodeficiency. She’s done really well so far, but everything in her household is focused on her care needs and recovery. They respected most of her colon but she avoided even a temporary colostomy. She needed someone 24/7 for a week per her surgeon; there was no way she would have been up to looking after another person. She’s sleeping a solid 10 hours at night and taking a 2-3 hour nap daily which is a huge contrast to her usual go- go- go personality. Post surgery you will likely be on a specific diet and may deal with watery diarrhea during the recovery and for sometime after. When nature calls, it will require immediate action which could complicate caregiving. You could be spending a lot of time holed up in the bathroom dealing with toileting and hygiene. (She was told to get a bidet)
Given the care you’ll need, I would consider a respite placement for your DH while you have the surgery and recover. Most MCF have a 1 month minimum here, which would give you time to get back on your feet and likely know your next steps in terms of treatment once pathology comes back. Mom had TKR when dad was in the middle stages of the disease. We had a cousin stay with dad while she was hospitalized. He had a medical issue which meant I had to deal with that and then get back to mom and her hospital delirium an hour away. Once home, he had no understanding or empathy for her situation and while we did bring in aides, he refused help from them. He also refused help from me— like he wouldn’t eat his lunch if I brought it to him, it had to be mom. A respite stay would have been easier all around.
Good luck.
HB
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I was diagnosed with prostate cancer last year with DW in stage 6. I was fortunate that our PCP had already made a referral to hospice for DW due to her own issues. Hospice made care volunteers available for DW as necessary to allow me to seek the treatment I needed. They stayed with us for 9 months and then DW "graduated" as she was doing better and my treatment was completed. I can't say enough good about that hospice team - they were a god send. I would encourage you to see if that is an option for your situation. Wishing the best outcome for you and your DH.
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I think it is so easy to put off making Plan B. I hope your health issue is resolved, and good luck in the future. This is a journey full of twists and turns.
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Thank you for the information and I am glad you had great support. I don’t think we are anywhere near hospice. DH still volunteers 3 mornings a week at a local organic garden, although the tasks must be one dimensional (picking weeds, vegetables, etc.). He’s been doing that for 17 years. They know and care about him, keeping a watchful eye. His balance is still decent and he is feeling useful. But I am his anchor, he is my shadow and am concerned about his emotional balance as I go through this. I still don’t know details of what this is going to involve. But feel normal and hopeful. I will keep everyone informed as I learn more.
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Sometimes “answers” and a Plan B aren’t easy or obvious. Sometimes we just wing it. Everyone’s situation is unique and I hope that you won’t be faced with an unwelcome surprise.
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Thank you Joe. Your response is heartening. I still don’t have all the facts yet: CT results, pathology etc. but the doctor seemed to believe it was cancerous (due to his long experience). I am receiving offers of support, so I think it will be okay in the long run. Bummer is, even at 81 I am strong, active and otherwise healthy. I can’t even believe this is happening. So grateful for this site and knowing everyone’s experiences. I belong to a support group once a week and although we have bonded, I do not feel “ready” to share this news. Somehow I don’t want anyone to look at me and feel sorry. Sometimes that is the reaction when people hear one has cancer. Maybe I am wrong, but my perception.
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M1, Thank you for your suggestions. Yes, this is a huge deal coming out of nowhere. No symptoms of any kind. Feeling great. I keep thinking he must have made a mistake, but the doc has 27 years experience. Waiting for pathology report, result of CT scan, but bloodwork looks good. As you said, it is the recovery that is most concerning in terms of my DH who is nowhere near needing MC. At 86 he is still good physically (right now he is washing windows for me)…he just can’t remember 5 minutes ago and it is like having a child with the questions. But he is gentle and sweet and sometimes funny. I am his rock, and that is what concerns me. My daughter and 12 year old grandson live with me. She is in a wheel chair (paraplegia) so won’t be able to help him prepare for shower etc. I am sure others will come forward to help, but again, it is the recovery time that concerns me. Just grateful I do feel so strong and healthy at 81…I swim a lot and that has kept my body strong. Thank you again for sharing your experience. Will keep you all posted.
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Dear Harshedbuzz, Thank you for your reply and good advice. I have a daughter who is paraplegic but able (she drives). She has a 12 year old son (my beloved grandson) and they live with us. So while she is a help there are obvious things she cannot help with in terms of my DH. DH does go to an Alzheimers facility Day Club on Tuesdays and since all the paperwork had been submitted to qualify for that program, he would be able to spend more time (including overnights if need be). That would be our PlanB for him. He knows them and they him, and it is an excellent facility and I am comfortable for him to be there. He is my shadow, my constant companion, is very active in terms of helping around the house. He tells me that he appreciates that I make him feel secure and safe. That is an applecart I do not want to see upset. I am 81 and other than an emergency appendectomy with peritonitis (I nearly died) when I was 19), I have never had surgery unless you count a Caesarian birth. Even though my health for my age is excellent (even the doctor said that), I am concerned and trying to not be fearful.
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My husband was diagnosed in 2021. I had planned on keeping him with me as long as I was physically able. I'm 76. In December, I was diagnosed with a rare aggressive form of breast cancer due to radiation I had in 2017 for breast cancer. My DH only has one living child who lives out of state and is on disability due to hereditary lung fibrosis. My daughter offered to take care of him but I had to give up our apartment & move in with her while I underwent chemo & surgery and she works full time. I don't think she realized he required 24/7 care. So I had no choice but to place my sweet DH in memory care. I found one close to my daughter's house. It was almost $6000 per month. I have since moved him to a VA facility in case something happens to me I won't have to worry about him having enough money to pay for his care. He is being well cared for. I wouldn't wait to develop your Plan B. There are waiting lists in many areas for memory care. I finished chemo and had surgery 4/25. Thank God they got clear margins. I will have to be monitored closely for 5 years. My husband is being well cared for. As his disease has progressed these last 6 months I realize that I am not able to care for him. It's heartbreaking. I'm praying that the results are positive for both you and your husband. Please keep us posted. 🙏
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Diane, I am so sorry you have had to endure all that you have and can understand the emotions having to place your sweet DH in a facility. You have been through so much and my heart goes out to you. My DH goes to an Alzheimers specific Day Care (we call it the Tuesday club) from 9 to 2. I had a mountain of paperwork to get him registered. At that time they told me if he ever needed to do a respite stay or full time, all the required paper is in order. They know him from the Tuesdays so I don’t think it will be a problem if he has to stay longer. That is my backup plan. I have a daughter who lives with me. She is paraplegic but is independent. She has a 12 year old (my grandson) who is with us also. A good neighbor has offered help. I haven’t told my Wednesday support group yet…I don’t know why I am holding this close to me…but I know they would be happy to help in any way they can. Also my DH has done volunteer work at a local organic garden for 17 years (he still goes 3 mornings a week). Those wonderful people know and love him, are protective and caring of him…but when anything happens to any of them, they are there for each other, doing meal trains or whatever. I am sure they will be helpful. I have never had a surgery like this. When I was 19 I had appendicitis with peritonitis and was on death’s door. But the good news is I feel strong and healthy. Would not know anything bad was inside me if not for the doctor who thought it a good idea to have a colonoscopy. As I learn more, I will write here and appreciate the comments and support. And I wish the best for you; you have been through a lot.
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I am sorry you are going through this unsettling time. Just because you have a plan B, C, and D doesn't mean you have to use them. I would get on wait lists at a couple memory care facilities so that if you need it you have options. In addition to your own health, things can change quickly with dementia. A person can go from mobile or good natured or doing their own ADLs to the very opposite with very little obvious cause or warning. A common cold, a UTI, and many other things can cause a tail spin when the brain is compromised. If he were to take a turn during your treatment you could need options you were not expecting yet. Also, often times the caregiving spouse is providing much more scaffolding than they realize until they are separated for some reason. It could be if you weren't around as much his skills could decline. Sounds like the day program is a great option, but you will need to consider the other hours in the day when you are recovering from whatever treatment is required. I would definitely research temporary respite care in a facility. It's unfortunate that you may have to upend his routines but such is life.
It sounds like you take good care of yourself and have reason for hope for recovery, though it may be hard work. My father has impeccable habits and in his mid 80s is a freak of nature, he continues to defy odds. He has recovered beautifully from multiple major surgeries that have wrecked people much younger. But we have had to advocate hard for him, there are many agist attitudes in health care and some doctors who judge a person by their age and not their health. Sending you strength and care for the journey that lies ahead.0 -
DeR MN Chickadee, Thank you for your kind words. My daughter and 12 year old grandson live with us and I know she will be a huge help with my DH. She is paraplegic so there are some things she cannot do. Otherwise is quite capable we do have some friends and neighbors to pitch in. He is already enrolled in a Day program once a week. It’s an Alzheimer memory facility also. I had to provide all extensive paperwork for the day program and they told me at the time if he needed to be there on a shorter or longer time, he is already qualified. So that is my plan b or c.
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Joe, I am glad the polyp was removed but it was surgery nonetheless and glad you received the necessary help. What would we do without fiblets? I am looking forward to this being over with. Mostly I am concerned for DH, but I think we will have enough help with friends and neighbors. It is when I am in the hospital that I think he will feel insecure. One day at a time. Fortunately I feel strong and healthy. Would never know this is lurking inside.
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DW and I have no children or close relatives. We have a small circle of friends. Like you, Charley, I do worry iabout a medical emergency, and it could be for either of us. Some of the what-ifs can be handled if you live in an assisted living place, but there's only a small chance we would do that. Consequently, I've engaged a geriatric care manager who can make appropriate arrangements for either of us should the need arise.
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Hi @Sunnyside42,
I hope the issue doctor found during your colonoscopy can be resolved quickly. My best friend had a mass that was cancerous. The surgery she underwent to remove the mass was relatively quick and complete. The followup treatments went on longer, but it was all outpatient with minimal disruption to her life (single, working woman, different than yours where you are carrying the ball for two people). Keeping fingers crossed for you.
Due to our relationship circumstances where DH and I got together having already had children from previous marriages, I knew I had to act fast on "If something happens to me".
Two of his children resent our marriage and have cut off all contact with us. My two surviving children are much younger than them, and I came into a substantial inheritance during our marriage. My fear was if I died before him, he needs to be taken care of, and when he dies, his kids inherit everything from him. So I needed to protect my kids' inheritance, because he is completely incapable of making decisions or even understanding what is going on. Sigh.
I developed a detailed document with every contingency I could imagine and filed it with my trust documents. Just an idea.
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Commonly Used Abbreviations
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ES = Early Stage
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AL = Assisted Living
POA = Power of Attorney
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