Good morning. This is my first time on this site and I'm sorry that it has taken me so long to search and find it.
April 28, 2001 redefined our life when my wife suffered a deep left side brain bleed. Surgical intervention, induced coma, neuro-care, 8 month post hospital inpatient rehab, with PT, OT, speech therapy. Speech therapy, most critical therapy, was suspended after a two week period of "no significant continued improvement." I was active duty military at the time and my wife had insurance through her employment so the combination of TRICARE and her insurance took care of most expenses but there was no direct assistance for me determining her long term care. Ironically, I'm a Clinical Health Psychologist treating long term medical illness, and working with medical providers across the sprectrum of health care. Everyone told me I was fortunate to have my background and thought I was prepared to manage all of this due to my training, but dealing with my wife has not been like my work with patients in a clinical setting or the hospital. I feel isolated in spite of several friendships and family living close by. Our 47 year old daughter, who was my main support, passed away last year after a very short, two month, bout of liver cancer, leaving me further isolated. My wife is increasingly reluctant to engage socially because of her speech limitations and how confusing it can be in groups where multiple people are speaking. Limited of physical activity and a recent fall with a low back compression fracture, back pain and further inactivity has challenged us further.
I'm retired now and am a full time caregiver. My wife can do all ADLS with my help when needed. I transport, help with meals, and do the bulk of house cleaning and laundry, and all of the finacials. The seizures are less frequent now but just as anxiety provoking for me when they do accur. Their infrequency has not lessened my "alert state" much. My outlets and therapy include gardening, walks with our dog in our property and neighborhood, periodic early morning meetings with friends while my wife sleeps, read, watch sports TV and movies. In all of this I still feel isolated and wonder if family and friends really understand the issues, stress and loss of the relationship my wife and I had before her aneurysm. I suspect there are others on this site with similar issues.
Hello, drmwvr1 -
Wanted to welcome you to this forum and thank you for posting abiut your caregiving story. One of the things that caregivers across all caregiving sitautions and experiences can relate, and that is feelings of isolation. Even if we have the support of other family and friends as a part of a care team, it can still feel lonely sometimes. Sharing and engaging with other caregivers can be a huge part of helping with that - connecting with folks that have an understanding of the some unique aspects of day-to-day life as a caregiver. I hope joining this forum will be an avenue to chat with others.
So garateful you are here, and don't hesitate to reach out if there is anything you need.
Nichole