Meet fellow Caregivers - Introduce yourself

Hi, I'm Sandy. My hubby was diagnosed with a glioblastoma (brain cancer) that is the deadliest cancer. We had surgery, radiation and chemo. We are now on maintenance chemo. After the initial kick to the gut, I had 2 choices: Fight or
Flight. I chose to fight. After 45 years of marriage, how could I not? We are confident in our doctors but needed to take control ourselves. I've read everything I can get my hands on, which had led us to Duke Cancer Center for possible clinical trials. The tumors usually come back. So far, we've been blessed that it hasn't but, if it does, I believe Duke can help. The first thing I recommend is to get an accordion folder and keep copies of EVERYTHING, including
Dr notes, discharge summaries. The doctors have been surprised at how organized we are (everything is WE because it's our fight). I've even made sure I keep the dates of when chemo was/is and MRI dates, to include copies of the disks and reports. It's impossible for the patient to keep up with everything and to absorb everything. That's the job of the caregiver. It's a huge job but worth it when you love someone. The best advice I can give? Try to maintain a normal life and make sure the patient gets out and about, exercise etcetera. They can't be allowed to sit around, feeling sorry for themselves

My mother has dementia. We noticed last year she had some signs that something wasn't right and asked her if she was taking her meds, just doing things like laundry and making meals. My sister in law came to visit and confirmed she wasn't doing anything I mentioned. I was having hip problems at the time and could not get around well. Took her to our family doctor and he said she was clean dressed nicely and talked with him about things. Said he didn't see any problems. I went down every day to make sure she took her meds did her grocery shopping and wash. Found out she had bags of dirty laundry hidden around the house. Next she started forgetting about appointments would come down to take her only to find out she would be sleeping and not even ready. This was her hair appt. would call her 2 hours before an appointment so she would be ready. Then after she started going back to sleep and forgot that I even called her. She started not remembering current things. Wouldn't even remember what she ate. Finally I was able to get her in a hospital too see what was going on. Found out she had a severe uti and they started treating her. Thought that might have been the problem. No not really. They transferred her to a nursing home for physical and occupational therapy. She stayed there 3 Weeks and they determined she needed more care then I could provide. During this time I had severe hip problems and could hardly get around. I was on pain medication for it but had to find a place for my mom. Couldn't take her to my house because bathroom was upstairs and she was using a walker and couldn't do steps. Dont know if I did the right thing but I called a place for mom to see if they could help. Actually made appointments for me to see the assisted living places. I did check out the reviews and one seemed pretty nice. We admitted her there. Now I am questioning myself if I picked the right one. Seems there are somethings that I am concerned about. One was there air conditioning not working the past week when it was really hot. It was not just her room it was other places. An aide told me to talk to the director when I did they blamed it on the patients why it was not working. I was there one day when it was off. It had tripped the circuit. Two days later it wasn't working and by the end of the week still was not working. Also asked if a doctor had been in to see her at all. One was supposed to come in every 3 months to check on her. Asked the director said she has been there long enough he should have came said they would check never got an answer. Now I am wondering if this was the right place to put her. Maybe I am just feeling guilty I put her in there. My brother who lives in Texas never even came up to help with anything. I couldnt walk and my husband who has a slipped disk had to get everything moved out of her apartment. I felt at the time we were doing wrong. That she should have had some say to what she wanted to keep. Everybody said I was crazy. My husband felt the same way when he was getting rid of things. Months later she has been realizing that she has been there awhile and has started asking about certain things. Told her my son and daughter have most we kept a lot that thought she might want. She seemed to be happy about that. It's just been hard and now a year later I am finally starting to get around better and spending more time with her. Worst of all I am feeling bad that I had to place her anywhere. My brother tells me if I didn't she probably would have died already. its botherig me know because I feel I wasn't capable enough to making important decisions and am questioning myself.

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I'd like to invite you to the new Caregivers group. It's a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you're caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

Hi i am new to this group my name is Kepi and i care for my husbands mom whom i love very much we moved in with her in Dec 2015 because she had some silent strokes that has left her legally blind and in Feb on the 8th she was Dx with late on set Alzhymers. In Dec i downloaded a book called the 36 Hours because i felt there was something else going on with her. On the 8th of Feb. Her secondary caregiver brought home the same book from her Dr. She was put on Aricept after her mmse was 18/30 in May her mmse was 25/30 after i looked at her lab work i noticed her vitamin B levels were way down along with her vitamin E so I also added those in February. She is doing really great. And of course we had a small dog which she now owns lololol Bella just lives mom and mom loves Miss Bella. Thank you for ketting me share and join this group.

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I'd like to invite you to the new Caregivers group. It's a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you're caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

Hi @19lin @aasthapuri @adri @bbams @besrus5 @bina @burrkay @charlena @chesneydell1965 @clayton48 @coladyrev @dawn_giacabazi @dawn0202 @eaglesview @IndianaScott @jeannie2 @jennyjones38 @jhammer @js119 @lindagee @lisa_sj9 @saltyfrog @shellsk24 @soul @sylviapf @tavi @ters1993
I'd like to invite you to the new Caregivers group. It's a space where we can share the ups and downs of caregiving, honestly and openly without judgement. Whether you're caring for someone with dementia, cancer, heart problems or whatever, please join us. Pull up a chair and tell us a bit about yourself.

My name is Barbara Kaser and I live in Chapel Hill. My husband is being treated at Duke in a clinical trial for stage 4 gioblastoma. He has already had a year of surgery, chemo and radiation. He is doing ok all things considered but is slowing down. It is hard to see him go from a man who could do everything to just walking is taking a toll. I have much to be grateful for but going through this has really changed us and our priorities.

Hi i am new to this group my name is Kepi and i care for my husbands mom whom i love very much we moved in with her in Dec 2015 because she had some silent strokes that has left her legally blind and in Feb on the 8th she was Dx with late on set Alzhymers. In Dec i downloaded a book called the 36 Hours because i felt there was something else going on with her. On the 8th of Feb. Her secondary caregiver brought home the same book from her Dr. She was put on Aricept after her mmse was 18/30 in May her mmse was 25/30 after i looked at her lab work i noticed her vitamin B levels were way down along with her vitamin E so I also added those in February. She is doing really great. And of course we had a small dog which she now owns lololol Bella just lives mom and mom loves Miss Bella. Thank you for ketting me share and join this group.