Temporary sadness ?

Posted by 2me @2me, 4 days ago

Hello,
I am feeling apologetic for posting, as many of you have far bigger things to worry about…but I’m wondering if my husband’s recent sadness/depression might be temporary, and hoping you’ll reassure me.
On Tuesday, he had Moh’s surgery for a spot on his scalp, which turned into a much larger area than we had thought. That was 2 days ago…it hurts, tho the Advil/Tylenol and icing regimen they suggested seems to help.
I believe, more than the actual procedure or pain, he is bothered by having more and more medical appointments. He is usually pretty easygoing, but with every other week Leqembi infusions (Tomorrow will be #4) he sees this as “the rest of my life” (he’s 80.). MRI on Monday…etc…

Dare I hope that once the pain and pressure on his head ease, his personality will right itself? He has gotten much more confused and less able to do things for himself just in the last few days…cognition seems to have changed and not for the better.

As I said, so many of you are dealing with other diseases/hospitizations, etc along with dementia, I hesitated even writing, but I guess all of our concerns are valid, for wherever we are on this horrible journey.

(He is on Lexapro, 10 mg.

We’ll get out of the house and do something fun soon-once he’s feeling better.

I just don’t know how to help him feel better. Thank you.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Profile picture for schenelly @schenelly

I very much connect with what you’ve said. My husband has faced a variety of illnesses in the past 2 years: prostate cancer, radiation, severe low back pain withradiculopathy from spinal,stenosis, bilateral, two-level laminectomies and foraminotomies, pneumonia with sepsis, mild dementia . Recently he had a UTI after his urologist performed a cystoscopy, and the last month he has deteriorated both physically and mentally. He often doesn’t know if it’s day or night, says bizarre things not connected to reality, and is increasingly needy, lonely and sad. Very difficult to watch and live through

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@schenelly - Wow…you have a lot going on! I’m so sorry.

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Profile picture for 2me @2me

@schenelly - Wow…you have a lot going on! I’m so sorry.

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@2me
Thanks. I know we all do

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@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.

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Profile picture for ocdogmom @ocdogmom

@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.

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@ocdogmom
Thank you for your response. I feel we are halfway down the road you and your husband have been traveling. His confusion and memory issues seem to grow almost daily, and the slightest change in his meds or health ( for example, UTI), accelerates them. I wish you strength and the most peaceful future for you both. I find myself in tears almost daily now, but it does help to know there are others who understand.

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