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@sma1952 I applaud you for the strength and courage it takes to trust others to the care of your mother. It is so difficult.

Towards the end of my mother's struggle with glioblastoma. Mom had to make a decision of staying in her home or having assistance from a facility as she was a primary parent two young boys. They were 9 & 11 yrs old and staying in her home was not an option. My medical back ground had prepared me for the dying process for which I had great confident the boys would not be able to handle.

Mom was admitted to the care center on Thursday and passed away on Tuesday. The cancer had eaten holes in her face and scalp. I beat myself up for many months deciding what to do. Not having her pass away at home, I know now that was the absolute best decisions we could have made. That was not how we wanted those boys to remember her.

Demand great care. You always have a choice to call your state hotline and report you concerns if they have not resolved the issues.

Trust your heart
Dawn

Dawn, how long did your mom battle glio?

@sandydominy1
I was 8 months pregnant when mom was dx in Sept 2011 and she went to her forever home on Feb 2012 - we were very, very blessed to have 5 months with her. Which was far longer then the doctors had every expected. They told us she would only have maybe a week or two.

Peace
Dawn

I have early onset Alzheimer's. I am quite functional and self-supported in an independent living situation. I am a professor emerita in the psychology of learning and memory. Is ANYONE aware that there is absolutely no help (not at the national, state nor local level) available for me to learn practical coping skills? Not a single support group for me? I am allowed only social workers and social activities. My non-existent, unneeded caregivers receive all the help. I am just the afflicted. After leading a professional life IN THE FIELD, I am given the status of a piece of crap. Yes, I am angry that the system has so utterly failed me.

Hello @nocaregiverneedednohelpavailable. You deserve to be just as damn angry as you can be! In my opinion, the system of caregiving and of many medical/insurance personnel deciding who needs what is deeply and seriously flawed.

My wife was caught in caregiving limbo for many years as she was able to do certain things, so the decision was made she did not need caregiving. It is a system that needs reform, but I cannot see it transforming itself.

Skill building/retention for coping is desperately needed, but unless the individual fits some predetermined format or ideal, there is often no help. At one point in my wife's rehab I was told simply 'she is not like our other patients so we can't do anything for her'.

I send you strength and peace -- and hope others have some knowledge of resources you seek and want!

Thank you, thank you, for your support! You are the first person I have found who even acknowledges there is a problem. Most just get angry at my frustration.

I so very much agree with you and your anger. I am a care giver and I have challenges but I am NOT the person who needs and must be at the focus of attention. You, just like my husband, need to be actively engaged as early as possible in the discussion of what is happening and what can be done to help you cope with the changes that are underway. I've never experienced hospice but think that there needs to be something like the hospice model available to everyone who is diagnosed with Alzheimer's -- yes, I understand every situation is different and there will probably be denial or lack of understanding (as is the case for my husband) but he is facing challenges to his physical and emotional well being that he needs to have affirmed and helped with coping. As a caregiver and his wife, I can do a lot but our lack of knowledge means we are spending precious time searching for solutions while the individuals with Alzheimer's are suffering more than they should or need to.

Thank you! I am so surprised that the caregiver's website is the one place I have found support. I am not alone in my frustration.

@tavi you are SO right! There needs to be much better, patient-centered care for those with Alzheimer's disease and other forms of dementia.

I am sure what I am about to type is not universal, but in far too many cases I have experienced medical professionals who are simply out of their league, or at least their comfort zone, with dementia (or any patient with less than 'normal' mental capabilities so they try and just move those patients along down the line.

I had one doctor tell me, in front of my wife who he thought could not comprehend conversation, that since my wife had very high anxiety and was having a hard time coping with her wait time, she was no longer welcome to come to him for his services! And this was just to have a baker's cyst drained so she could perhaps walk better. No thought to what the patient needed to get better -- not at all.

And if I had a nickel for every time a physician told me 'we'll get back to you with some suggestions for your wife's care' -- but I never heard from again -- I'd be a billionaire!

Patients with cognitive issues need far better support and understanding than they seem to be getting now -- and that my wife ever did (other than from her neuro-oncologist who stuck with us for the entire 14 year journey).

Again @nocaregiverneedednohelpavailable -- be strong and you might want to check out the resources offered by the Rehabilitation Institute of Chicago. My wife was inpatient there for months and they actually did provide her with some coping skills redevelopment skills.

Strength and peace to all,

I am so sorry for what you and your wife went through. Thank you for the support and the reference. I will check it out immediately.