Temporary sadness ?

@schenelly I can relate to your situation and what your husband has gone through. Though it is not just the patient, it is both of you. My husband also had prostate cancer with a prostatectomy number of years ago and to me that was the start of the caregiving journey. It was the beginning of all the tests, imaging, surgeries, chemotherapy that has been an unwelcome part of our lives since then. He too has had two spinal surgeries to address spinal stenosis and sciatica. No more shooting pain down his leg but he still has chronic lower back pain to the extent that he cannot tolerate being out of bed for very long. We tried a Spinal Cord Stimulator but with his dementia he didn't remember what the trial wires and bandages were for so he partially dislodged them which is a shame because it seemed to work for the 8 hours they were in before he pulled the wires out of place. Then he was diagnosed with Mantle Cell Lymphoma and received chemotherapy for that which was successful in that he is now in remission but I feel that it accelerated his dementia and worsened his chronic depression. He is now in stage 6 on the FAST scale, for dementia, sleeping all day unless I get him up to eat or go to another doctor appointment. As his power of attorney for health care I have decided in agreement with his internist that we are now in what I call "quality of life mode" or hospice care without the hospice agency. I have spoken to his oncologist and shared with him my desire to stop the immunotherapy injections that he was receiving every two months along with the blood work that had to be drawn before each injection. He agreed that with my husband's progressive dementia it was an understandable and compassionate choice. My husband has been in remission for two years now. My husband does not know where we are going when we go there and for what. I also spoke to his dermatologist who has been surgically removing basal cell carcinomas from my husband's face, ears, arms and legs for he last 20 years (he is very fair skinned) and told him we are done with any further treatments. Basal cell carcinoma is very slow growing and is not going to kill him, rather these surgeries will only diminish his quality of life. With the help of my husband's internist we have made a POLST document that outlines what medical care is request and not requested if emergency personnel have to be called to our home. eg. no CPR. It is very difficult and painful for me to watch my once brilliant, active, funny husband deteriorate to where he is now. My goal for him now since he is no longer capable of making choices for himself is to live the rest of his life as pain free as possible, at home with me, with his adult children, grandchildren and dear friends present as often as they can manage. Our dog Charlie is part of the team as well. I will keep you and your husband in my prayers as well as all who have to walk this dementia journey. God bless you both.

@schenelly It has been my experience that any changes in my husband's environment or physical health can really rock the boat and make him more confused. So we don't go out much anymore unless it's to family that he is used to seeing.
I think that the tears are called for because we are losing a little bit of our husbands daily. We are, in actuality, grieving and grieving means tears. This has been called "ambiguous loss" meaning "he's there but he's not there". I have found that this is very difficult for most people who are not dementia caregivers to understand.
And perhaps that is why we feel so isolated sometimes or disappointed when family or friends do not offer to help more. They truly don't get it. We who post on this site do get it and understand the feelings you are going through as we are on the same journey. I try to start my day with reading a few pages in a book called "Daily Comfort for Caregivers" 365 devotional readings. 2009 Barbour Publishing, Inc. I bought it on Amazon. It helps me get my head and heart in the right place for a day of caregiving challenges. I also find myself at times during the day when my patience is challenged saying a small prayer asking God to help me get through this moment without snapping at my husband. I also try to read the posts on this blog to remind me that I am not alone and to see how others have managed some of the same issues I am dealing with. May God bless you with what you need to keep going.

@schenelly -I wanted to add your descriptive words would also be an accurate description of how my husband is feeling: needy, lonely and sad. He can still stay home while I do errands, go to appointments etc, but often he comes out to the garage as soon as I pull in. Sometimes I just sit in the driveway for a couple of minutes to pull my thoughts together before coming indoors. But we will continue to try to find interesting things and people to interact with. So hard. He’s scared, and so am I.

@schenelly I can relate to your situation and what your husband has gone through. Though it is not just the patient, it is both of you. My husband also had prostate cancer with a prostatectomy number of years ago and to me that was the start of the caregiving journey. It was the beginning of all the tests, imaging, surgeries, chemotherapy that has been an unwelcome part of our lives since then. He too has had two spinal surgeries to address spinal stenosis and sciatica. No more shooting pain down his leg but he still has chronic lower back pain to the extent that he cannot tolerate being out of bed for very long. We tried a Spinal Cord Stimulator but with his dementia he didn't remember what the trial wires and bandages were for so he partially dislodged them which is a shame because it seemed to work for the 8 hours they were in before he pulled the wires out of place. Then he was diagnosed with Mantle Cell Lymphoma and received chemotherapy for that which was successful in that he is now in remission but I feel that it accelerated his dementia and worsened his chronic depression. He is now in stage 6 on the FAST scale, for dementia, sleeping all day unless I get him up to eat or go to another doctor appointment. As his power of attorney for health care I have decided in agreement with his internist that we are now in what I call "quality of life mode" or hospice care without the hospice agency. I have spoken to his oncologist and shared with him my desire to stop the immunotherapy injections that he was receiving every two months along with the blood work that had to be drawn before each injection. He agreed that with my husband's progressive dementia it was an understandable and compassionate choice. My husband has been in remission for two years now. My husband does not know where we are going when we go there and for what. I also spoke to his dermatologist who has been surgically removing basal cell carcinomas from my husband's face, ears, arms and legs for he last 20 years (he is very fair skinned) and told him we are done with any further treatments. Basal cell carcinoma is very slow growing and is not going to kill him, rather these surgeries will only diminish his quality of life. With the help of my husband's internist we have made a POLST document that outlines what medical care is request and not requested if emergency personnel have to be called to our home. eg. no CPR. It is very difficult and painful for me to watch my once brilliant, active, funny husband deteriorate to where he is now. My goal for him now since he is no longer capable of making choices for himself is to live the rest of his life as pain free as possible, at home with me, with his adult children, grandchildren and dear friends present as often as they can manage. Our dog Charlie is part of the team as well. I will keep you and your husband in my prayers as well as all who have to walk this dementia journey. God bless you both.

@2me My husband is standing outside waiting for me also when I pull in. He still can stay at home by himself, and doesn't wander far, as we're in a rental, for the last 9 months, and he's comfortable there. If it's raining, he'll be at the door waiting with an umbrella, or walking out to the car with it open, or just standing out near the parked cars, looking down the street, like he's hoping I will pull in at any time. Just the look on his face, when I pull in says it all. It's obvious, patiently waiting for me. I don't think he's sad or lonely. I think he just feels safe, with knowing I'm back and we're together under the same roof. Especially on rainy days, where he gets very anxious about the weather and being outside. Best, Karla