So in 2004 my dad was diagnosed with stage 4 lung cancer. Obviously a shock to our family ( mother, sister and three brothers). He died within 3 months. At the time none of us knew much about cancer. I learned alot quickly but he also died so quickly and there was not much discussion on any care/help etc. Fast forward to 5 years ago, My mom was diagnosed w stage 4 thyroid cancer. Having watched my dad go very quickly I was determined to help my mother the best I could. She lived alone and was scared so she often stayed at my house (a two bedroom ranch with myself, my wife, and a newborn). Since we were already considering moving, my wife and I, Noticing that my siblings were not doing much to help out, thought that we would have my mother live with us. Our house (and hers) was too small so we decided to combine our resources and buy a larger house the 4 of us could live in. I sent an email to all siblings stating that I was willing to take mom in but in order to do so I would need to sell both houses and use the proceeds to buy a new one that my family and mom could live in. And stressed that if I do this that there would be no money left after that (mom only has a small pension and a small life insurance)
Brother 1 (lives over 200 miles away) (financially secure. does not need to work) --Thank you. Please let me know what we can do to help
Brother 2 (lives many states away) (single) Fine by me.
Sister. (Lives 30 miles away)(never needs to work again. Owns 4 houses). I don't get along with her anyway
Now to be honest, after seeing my dad deteriorate so quickly I did not thing mom had much time. I wanted her to be comfortable and to be able to spend as much time with her new grandson as possible. after moving in with us she did start to get very ill. tumors on her spine caused excruciating pain, radiation treatments were not fun, plus she is also anemic and has a seizure disorder. I became her primary caregiver. Handing out medication, sitting with her at night when she was scared, cooking her food, driving to doc appts, applying pain patches. It got to the point where I had nurses coming to the house and hospice waiting for me to let them know it was time. Through all of this rarely seeing my siblings. (also need to mention that my son went through a very serious medical issue at the time and was hospitalized several times. He is better now.) This went on for a few years and two separate rounds of radiation. Amazingly mom did get better. To the point where she was able to take care of herself again. This is where it gets tricky. Mom was living with us. We had a four bedroom home and gave her 2 of the bedrooms. I was more like a parent with a teenage daughter. Mom is a very social person and loves to have people over all the time. Myself and wife are much quieter and enjoy our time together. This started to cause some issues so after 4 years we decided that it would be best to turn the garage into a one bedroom apartment for mom. The garage is right off the kitchen so she was not far away. She had her own space to entertain could come and go as she pleased and was still in our sights. my son would come home from school and "go over to grandmas". All was well until a few months ago. Moms blood pressure was spiking. Spent many hours in the ER. Finally got it under control but also found out that more tumors grew back on her spine plus she was having trouble breathing. She spent 12 days in the hospital for breathing issues. At the same time her oncologist was calling to tell me that she needs another round of radiation ASAP. So now she is in a rehab center, can barely walk without getting out of breath and needs to start radiation asap. She has called/texted me several times in the past few days to tell me how bad the food is, nurses, cleanliness of the place etc.... I went there. it is fine. She just wants to be home. So yesterday brother 1 comes from a state away to visit her. My thought "great. I can spend time with my family". nope. Get a call "mom is trying to leave the rehab place". call from mom " I want to go visit your aunt, they wont let me out of here, bring my oxygen here now". this goes on and on. Finally a nurse calls to ask me what to do. Long story short, I ended up spending the day with my mother, brother and fam, and other family members. Wife stayed home (understandably). We are starting to go through the whole process of being a caregiver again and we are scared. I will stop the story here.
My question to all is, how do you deal with all of this? One sibling is helpful to the point he can be. Others are so distant, but will always offer criticism when needed. I have gotten several messages from sister about "how dare I put mom in such a small apartment", "You shouldn't have bought that house" etc etc etc. Lots of criticism but no real help. I am drained emotionally and physically, my job has suffered, and did not help my marriage in any way. Wife has been supportive but is very frustrated at the lack of help and criticism from siblings.
Sorry. that was my venting.
I followed up by calling her and having a huge relationship ending fight. (Brothers responses were "what can we do to help"). Sad that she does not realize all that's is sacrificed when taking care of a sick parent. All I needed to hear from her was "thank you". But instead I got a backlash of every thing I have done wrong
It seems you have done everything in your power to make a nice home for your mom. You've gone to any length to ensure her comfort and to make sure she's cared for. You're a very good and dutiful son.
Caregiving in and of itself is usually a nightmare. That's why sites like this were created. Throw in some unsupportive siblings and unstable health issues like your mom's and things can get very messy.
I cared for my dad in my home. He became so sick that the last 6 months of his life were spent in a nursing home because I was unable to care for him by myself. I had 100% emotional support from my brother and when he was going to visit our dad in the NH I knew I could take a break that day. My brother and I discussed everything, every little decision. I leaned on him. I was the contact person at the NH. It was me they called when there was a problem. I would zip up there on a moments notice and drop everything I had to do that day to take care of issues my father was having. And even though I had amazing family support and my dad was so easy to care for (in terms of his temperament and attitude) it was still the most difficult thing I have ever done in my life. I was a caregiver for about 5 years and even under the best of circumstances the stress practically killed me and I lost 20 lbs as a result of the stress.
I was so burned out that when I took my dad for a procedure and we hit a few bumps in the road in getting him into the clinic and to the right facility I broke down in tears. I was inconsolable. I sat in the waiting room crying my eyes out until one of the receptionists came out and asked me to come back into one of the rooms. She offered me water and I just kept babbling about how I was my dad's caregiver and we couldn't find the clinic and then he had to go to the bathroom and did I take him to the men's or the ladies room and I was told there would be wheelchairs and there were no wheelchairs and on and on and on. Talk about burn out! I guess if this was a time to either laugh or cry I chose to cry.
You have the most difficult job in the world. There are facilities that offer respite to families. You check your loved one in for a couple of days and then you relax and enjoy yourself for a few days. You have to guard against burn out. It will affect your health and it will start to slither its way into your entire life--your job, your marriage, and your social life. We're not equipped to give everything we've got to one person. It will wreak havoc on your life and your body.
I hope you find some ways to get some down time. The price we pay for not taking care of ourselves while caring for another is very, very steep.
While your mom is in rehab is the perfect opportunity to make the decision that you are not able or willing to provide for her care any longer. The social worker at the facility will help to find appropriate living situation for mom.