Caring for my husband who has Brain tumor and Alzheimer's

Posted by ladamato @ladamato, Feb 26 12:34pm

My husband has both a glioblastoma and Alzheimer's. He is in the early stages of dementia and has good days where you wouldn't even know he's affected. But the medical wheels turn way too slowly in this country. How do I cope when all of this is happening and I have no support partially because he doesn't want anyone to know.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Becky, Volunteer Mentor | @becsbuddy | Feb 26 9:48pm

@ladamato I know you’ve on Mayo Clinic Connect for a few months now, just looking around and getting acquainted with all the discussions. So, Welcome to MayoClinicConnect! Wow, you’ve really presented quite the problem for members to help with. But this support group is really great and I know they’ll try to help you.
You say that you have no support. Are there any family members within at least 50 miles? And really great friends that you could lean on? Does anyone know about the glioblastoma? If so, you can talk to them about it .
Let’s let some more experienced members give you some tips.

2me | @2me | Feb 27 6:28am

My heart goes out to you. My son (age51) died this past October of Glioblstoma. My husband has worsening Mild Cognitive Impairment (his sister died of Alzheimer’s ). I hope your husband will allow people to know, as not only does he need the support, but you do also. I have no advice, but I know I could not have navigated the past two years of my son’s diagnosis and illness, and my husband’s ongoing situation without family and friends propping me up…sending hugs.

Colleen Young, Connect Director | @colleenyoung | Mar 11 8:55pm

@ladamato, it is so hard to respect your partner's wish not to let anyone know and your need as a caregiver to have support from people who are aware of what you are going through. How can you get help if people don't know what help you need? I understand. My dad was like that too with his cancer. He only wanted my mom's help and she was getting worn out.

While he is in the early stages of dementia, now is the time to do your research of supports you may have in the community. Is their an Alzheimer's Society or Association branch near you? Or a respite center? Is he currently in treatment at a cancer center where there may be an oncology social worker you can speak with?

How are you doing?