silentk
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I am writing first to thank everyone for their kind words and support and to also update you on how things have changed. As my husband has come to accept that it is not I who keeps him from doing all of the things that he could accomplish even just 3 months prior, his demeanor has softened. It has taken understanding from both sides, I must admit. Things that I allowed bother me in the past I now understand are a direct result of the direct carnage this hateful disease brings. Sure he lashed out, but I realize now he had to come to terms with so many changes in such a short period of time, none that he could control. I am grateful that his anger and resentment subsided before he leaves this world. It takes a lot of patience and understanding to deal with it but once you understand that the disease takes so much more from a person than can be imagined, unless you see it firsthand. My husband just 3 months ago was working a full time job and a year ago was 100 pounds heavier. Among other things this was striped from him. He now can’t focus on a conversation, can’t go into a grocery store because he is so weak and sleeps 3/4 of his day. In addition to his physical symptoms, he has become fixated on fidgeting with things-dumping out items and carefully replacing them; counting and re-counting items. I fear that his end may be near and will be talking to his nurse about these changes. Curious if anyone experienced this with their loved one.
Thank you all for the support. It has been several weeks since my initial post and I have been super busy. My husband’s family has taken turns flying here from IN and it has been a bit overwhelming. The good news is that it has helped my husband’s attitude somewhat. He is still somewhat distant, but at least at times he communicates. His disease has made him sleep the majority of the time and his feet and abdomen are swollen, despite the nurse draining his abdomen twice a week. I have spoken with her about my fear of not being able to handle having him pass at home and she has said we will move him to the center when he gets to a point I feel I can no longer provide care for him. The nurse really never gives any indication that she is concerned he is getting close to the end and his vital signs seem to be fairly normal but he has gotten so weak that he now requires a walker to get around the house. I pray she doesn’t leave me in a situation I am not comfortable with, although we all accept that possibility when we agree to home care. Victoria, we have had minimal smoke in our area (30 miles north of Portland) but my oldest son and his family live in Bend and have suffered with very poor air quality due to the fires for over 3 weeks. Hope all is well with you all and thank you again for the encouragement,
Thank you all for your encouragement. I am reaching out to our social worker who is amazing, if nothing else to vent to her about my frustration with how he has chosen to spend his final few months of life. I am devoted to give him the best life, love and support he will accept and grieve for what could have been when I no longer have to deal with the negativity. My dr is very supportive and has given me Lorazepam to help with the anxiety. I have learned to use that, along with just walking away and taking a few minutes to myself if I get too frustrated. He has admitted to his depression but absolutely refuses to take anything for it. So for now, I will remain hopeful that he will come out of this negative space so our family can experience happier times with him.
Thank you, Catherine. He has refused all outside counseling, spiritual guidance and even support groups. He makes me feel so guilty the few times that I have left him to run errands that I do not get away from the situation either. My interpretation of the situation is that he is overwhelmed with the prognosis and he is resentful that at some point we are able to move on with our lives and he doesn’t have that option. It is an impossible situation to be in. I will be discussing moving him to the Hospice care center with our kids, then with the Hospice social worker when I feel I have hit the wall with providing his care. Hoping for a change of attitude-soon.
