My dad has been on hopice for one year. He has untreated colon cancer. So he never got surgery or chemo. Im not even sure what stage he was because they couldn't stage him apparently without invasive tests and surgery which he declined. I know he has a good size tumor because the measurements from his colonoscopy showed half of the diameter of his colon was already blocked. He is declining but at a very slow pace. Mobility wise he can barely walk sometimes. I feel really guilty that I'm not more greatful that I still have him and he has lasted this long. I'm just so tired. I'm the only one caring for him right now, I havn't slept in a real bed for over 130 days because I need to be nearby to help him to the bathroom so i sleep in a recliner in the living room near his bedroom. He had a decline in November that left him pretty unsteady on his feet and very weak so thats when is stopped sleeping in my own bed. I never get a full night's sleep because he is up 5 times a night to use the bathroom. I only get out of the house every two weeks and sometimes its one a month depending on when my brother can come and sit with him. Even then it's usually only for about 5 hours and I have ot spend that time running errands and preparing to be house bound for another month. I live really rural so I have to prepare for long periods of not making it to the store. Honestly I just feel so guilty that I feel tired and done and just want it to bw over. I am even becoming angry. I'm the only one of my dads kids that doesn't have a family or major career. Everyone else really couldn't take on the responsibility and they just weren't able with their living situations and family responsibilities. Since I was living with my dad it was natural I guess for me to take on all the responsibility. I had to give up going to school, my job, my friends, everything. I don't feel like me anymore. My day to day living revolves around my dad and his schedule or my brother and when he can offer a little respite. When I sleep, when I eat, when I can exercise, when I can get out. Nothing is my own anymore and I feel so lost and like a robot that relives the same day over and over with no end in sight. Getting help via aides and other programs isn't really an option financiallyand neither is a facility. He is already on hospice but his insurance doesn't cover much other then what hospice has to offer in home. How do I keep going and keep moving forward when I know I could be doing this another year possibly. Any tips? Help! at this point I really hate waking up and I'm so alone and isolated. My dad is now sleeping a lot do it's quiet all the time. I have worked on so many hobbies and things but I'm just getting so worn down. Please only helpful answers. Also if you have a loved one who had or was on hospice for colon cancer what did your experience look like? I'm just want to see if my situation relates to anyone else's. I know that no two situations are alike.
You can also ask for a Volunteer to come in and stay with dad so you can...get some rest, get out of the house just to be away, go shopping or whatever you want to do. Typically the time limit would be 3 to 4 hours and a Volunteer can do no "hands on care"
But....
Another option or options..
Hire caregivers overnight. They can help dad and you can sleep. (dad pays for caregivers)
It sounds like you are simply exhausted, burned out if you will.
You can ask the Social Worker to help you place dad in a facility that will be able to manage his care.
Yes, this takes his care directly out of your hands but in a facility there would be people there 24/7 to help him.
And I have to add this.
If dad is a Veteran PLEASE check with your local Veterans Assistance Commission or your State's Department of Veterans Affairs and see if he qualifies for any help through the VA. Depending on where and when he served it might be a little help or a LOT. And I will add that if he is a Veteran YOU can be paid to care for him.
Some families use this every month to get a break.
Call the hospice RN and tell she or he you need these products.
Each week they should refill your products.
Do this until you can get Dad in a facility.
Also you should be eligible for some free counseling for you through hospice. Ask about that. You might be able to do this remote.
If neither you nor your brother are healthcare POA align with your brother and the two of you need to make a strong case with the healthcare POA that the two of you can no longer do this. Tell your siblings it is time for you to go back to work and continue your education and you can no longer take this on.
Your health and education are also important. You've kept Dad comfortable in the home. It is okay to move him to a facility.
Dad could be placed in SNF ( skilled nursing facility ) on Medicaid .
Have you reached out to your County Area Agency of Aging ? Perhaps they could help . I’m not sure but ask them if maybe Medicaid could provide an aide to come part time .
Also can Dad use a urinal or bedside commode ? , hospice will provide .
Hospice will also provide incontinence products , as he will become bedbound.
Dad could fall going to the bathroom and pull you down along with him resulting in you getting hurt as well . Talk to hospice , I believe Medicare will pay for respite time for about a week , where Dad would go to a facility .
Please consider permanent placement in SNF . I don’t think your Dad thought you would be having to put your life on hold so long . I also believe if he knew how depressed you are , he would want you to get your life back .