Coping & Overwhelmed: caring for someone with cancer

Coping and Overwhelmed - Boy, does that cover the Yin and Yang of our situations. I am sorry your fate is to deal with a never-ending caregiving load. I have not posted in a while because, although worn down by years of a situation that seemed never to change, suddenly, the status quo took on many changes. While trying to get VA assistance for home care, there was an attempted scam from someone presenting themselves as a VA representative. No money was lost, but plenty of paperwork and inconvenience. But, it turns out that getting reliable help is not easy, even with financial assistance. I expected to train people to care for the colostomy and the catheter. What I did not expect was to show them how to give my husband a bath. -- If you follow me, GloRo, you know I am 87 and use a walker. For the past year, I have been saying my husband is 93, parroting what he has been telling people is his age. In reality, he is weeks away from being 95. My brain is so overloaded with details that I have relied on him to know how old he is. Now, that is irony at its finest. -- Still, life goes on, so when his daughter came up for a visit, we headed out for a family dinner at a local restaurant. Between the cocktail and the soup, my husband said he was in pain. His son took us to the emergency. What he claimed was a pain in his groin (the area where his cancer has resided for years without pain or symptoms). When the doctor said it was an inguinal hernia, I thought he was joking. This sword of Damocles hanging over your head for an extended period has played with mind. After I laughed (not very sympathetic), I said, "Hey doc, as long as we are here, would you look at a few pictures in my phone taken today? There is a discharge that just started two days ago when the catheter was changed." It was necrotic tissue -- grey, slimy, and smelly. The tumor is half-dying while remaining half-active and has found a path of least resistance to create a fissure in the area of the buttock that was sealed from the original surgery that created the colostomy. -- After four days in the hospital, at the foot of my dear boy's bed, a doctor said he would probably not see his 96th birthday. This news was less stressful for him than when I said he was being transferred to a nursing home. With his lunch ticket in hand, he asked for the waiter so he could pay his bill since he wanted to go home NOW. When his daughter said he couldn't, he threatened to walk there. -- We transferred my dear boy to a Memory Unit in an Assisted Living Home nearby. Somehow, an Assisted Living Home does not hold the same dread in his mind as a nursing home. I have relearned an important lesson I had forgotten: lie. -- He loves the staff. He loves the food. He loves the activities. And I have discovered that I am tired. There are funeral arrangements to be made since he is in hospice care. and appointments to tidy up estate planning and financial requirements that have changed since last addressed ten years ago. The sump pump overflowed, and today, it was discovered that a toilet is leaking. I feel guilty that I have seen him only a few times each week since this all began. And I know that this is crazy because there are limits to every caregiver's abilities. But, his son, who lives here, and his daughter, who came up for a three-day visit that turned into a ten-day stay, have stepped up to the plate. I am exhausted but not alone. I have ensured that every phone call, doctor visit, and decision was made with full knowledge for those who may be called upon to continue care for my dear boy. I am always aware that my LO's father lived to 103, and at present, there is no pain, and his vital stats would be the envy of most of us. -- I am rattling around a house too large for one and yearning for the care and companionship of my daughter, who lives in another state. There are so many milestones in this journey. It seems I am still a caregiver trying to find the balance between what is given to others and what is needed for oneself. I hope this screed has something that might be helpful to someone. I think it helped me. GloRo

Dear @gloro ,

You have been on my mind a lot lately. I hadn't seen you post for awhile and hoped it was because things were going well. But, knowing how diseases progress, I worried the opposite might be true.

I just want you to know how much your sharing has touched me. Your openness about this journey has prompted me to be more open about the plight of my husband and me as we navigate through this great unknown.

I pray for peace for you and your husband. You have given so much, I hope you can rediscover those things that fill you.

Much love,
jehjeh

If your home is too large and overwhelming you can start by getting rid of what items you don’t need and look for housing options closer to people who are supportive and that have less maintenance needed. Take care.

I am in the same position. My husband’s occurred 27 years ago and reappeared just two years ago . We were completely devasted . He had major brain surgery to remove the Chondrosacroma in his skull but unfortunately the surgeons could not get a piece because it was to close to his curated artery . I am devasted . It is a very rare cancer and does not respond to chemo or radiation. Tomorrow we have our 6 month scans and doc appt later in the week . Our renowned surgeon has left Jackson Memorial Hospital. Leaving us with the unknown of this horrible cancer . I wish you all the best and you have a great attitude . Sending good vibes to all .❤️

JehJeh, Until now, I have never printed any of the posts I have sent or received. Yours is the exception. I consider it the highest compliment and shared it with my daughter, who, many years ago, had kidney cancer. She then took her experiences to become a patient advocate. I think silence is the silent killer from which too many people suffer. -- Last night, with his family, Russ and I celebrated his 95th birthday at a local restaurant where all those at tables with their own families sang "Happy Birthday" to him. He may not remember it tomorrow, but for that moment, he was the happiest guy alive. And slowly, I am going from exhausted to merely appropriately tired for someone who is 87. -- This adventure called life has taught me that change is always around the corner. Flexibility, hard work, and humor seem to be the key. Returning to my Writers Group and dusting off the art supplies in the room, which my lovely husband decked out to my specifications, are waiting to be resurrected. With luck, I will be a Phoenix and not a DoDo Bird. Thank you for your good wishes for the future. Love GloRo

GloRo, your attitude on this journey no one wants to take is remarkable. I am so glad your loved one's children have stepped. It says a lot about how they were reared, and how the two of you have maintained a relationship them.

Maybe you don't have to handle it all when it comes to arrangements. If the two of you have agreed on his final wishes, maybe his son can step in and handle the funeral details?

Also, if you can manage it financially, there are independent services in many towns who you can hire to "manage" your property, kind of a personal assistant who hires plumbers, gets the water softener salt delivered, arranges yard care, etc. Even runs errands and does shopping. I have two cousins in the Dallas are and a friend here in Minnesota who do exactly that.

Sending you warm thoughts as you navigate these coming days.
Sue