My caregiving advice - Sorry in advance, I wrote a novel

Hi Everyone,

I'm 25 and live in Boston, MA. I'm new to this site, and I really wish I had found it a long time ago. My Grandma was diagnosed with Tongue Cancer 6 months ago. She had a portion of her tongue removed along with some lymph nodes. The doctors wanted her to receive 6 weeks of Radiation. Unfortuntely she only made it through 3 weeks. As a caregiver, I know how hard and stressful it is. I spent 8 hours a day with her. I know often times I felt very alone, stressed, and angry. I felt like I was the only one dealing with her insurance, finding a place for her to live, translating (she didn't speak english), taking her to all appointments, dealing with doctors etc. By the end of it, I felt like I should have receive a Nursing degree or soemthing.

I guess I wanted to share my some of my experience. There has been so much that I've learned from being a caregiver, and I wish someone was there to guide me through it all.

- INSURANCE COMPANIES
Dealing with insurance companies is problably one of the most frustranting and angry experiences I've gone through. I've learned that you have to be tough with them or else they'll just trample all over you. My grandma had Harvard Pilgrim Healthcare First Senority Freedom Plus...it's a long one. They wouldn't cover her ambulance rides even though it was medically required for her to get from a Rehab Hospital to her Radiation treatments. She was on Oxegyn and was not able to sit in a wheelchair for too long. I ended up driving her myself, or using a wheelchair car.
Remember to check with insurance companies what they cover. If your loved one has to stay in the hospital or rehab or nursing facility, insurance companies may only cover a specific amount of days...it can get costly.

-TRANSPORTATIOIN
Ambulance rides were getting costly since HPHC had a co-pay of $300.00 a day. I wanted to drive her myself, but she was getting too weak and I didn't have the strength to lift her. I started looking into other means of Transportation. I'm not sure about other insurance companies, but HPHC stopped covering wheelchair cars, two years ago. If that's something you're interested in, call different ambulance companies and ask for prices. The Cheapest I found was Samaritan Ambulance. If you're in the Boston area, the MBTA offers a transport service for only $2.00. Unfortuantely they have a long waiting list and if you have time (which I didn't), you can pressure them.


-NURSING HOMES
My grandma was originally at Mass General Hospital. When she improved, they didn't think she was well enough to return home, so they sent her to Spaulding Rehab Hospital that specializes in Cancer patient rehabilitation. The nursing staff was absolutely amazing. As soon as my Grandma got a bit better, she could no longer stay there b/c it was for acute patients only. I had to scramble to look for nursing homes within a matter of days. I settled on a place called Wingate in Brighton, the organization itself got amazing reviews and the facilities seemed so nice...excuse my french but what a load of CRAP. Once we were admitted, the staff was rude, irresponsible and just didn't care about anything. We were there for less than a week and we had about 4 problems. They forgot to give my grandma medication on two occasions. She had to get a G-tube (feeding tube) placed, so I hired a wheelchair car to transport her so she wouldn't have to move too much. Since she was on oxygen, it was required that I ride in the wheelchair to regulate her oxygen...they sent her in the wheelchair car without me, without oxygen and sent her to the wrong building. That caused one of my biggest breakdowns...I completely lost trust in everything.

One thing I learned later on and wish I knew from the begining was if you're not ready to leave a facility, YOU DON'T HAVE TO. YOU HAVE THE RIGHT TO HAVE TO GET YOUR CASE REVIEWED. Social workers are great, but soemtimes there are ones who don't do a good job. If you don't feel like your social worker is helping you, you can always request to have someon else assigned to your case. They are there to help you and you should be comfortable with them.

When you're looking at nursing facilities, take and unofficial tour...just walk in and take a look around yourself. Observe how they treat the patients and their family members. Make sure you reach out to social workers that work with Cancer centers and hospitals.



- FINDING SOMEONE WHO CARES
When I was at my lowest, an amazing nurse at the cancer center was there to listen. The nicest thing she has ever done for ME was ask me how I was doing.

After our ordeal with Wingate, she referred me to a social worker who worked exclusively with the MGH Cancer Center. My grandma was transfered back to MGH for another operation and stayed there for about a month due to other complications. I am forever thankful for all the nurses and doctors there. They were like a breath of fresh air. They actually cared and went above and beyond to help care for my Grandma.

-TAKE CARE OF YOURSELF
Often times I wanted to crawl into a hole and shut everything out, but I'm glad I didn't. In the end I knew I did everything possible for my Grandma, and I have no regrets. I know how hard it is, but please know, you're not alone. Friends and family can try to understand, but nobody can unless they've been a caregiver themselves. I'm so happy to have found this site.