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!

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.

Oh my - we've had similar experiences..... I've actually scolded (in front of my husband because it was important he understood I was unhappy too) a neurologist we were referred to because he was being a bully to my husband during our meeting.... unfortunately great knowledge does not always equate with empathy and understanding...

@nocaregiverneededandnohelpavailable
Do you still feel energetic and want to engage socially? I am wondering if brain diseases cause one to disconnect from being social because they have lost the skills to comfortably engage with others. Perhaps the processing speed of the brain Makes chit chat difficult when one can no longer keep track of friends past and present activities. It appears to me that many believe depression is the cause of this disengagement when it could be part of a disease process that antidepressants can't address. Any thoughts?

My experience with my Mom is that she vehemently asserts that she is NOT depressed - in fact that she is perfectly content to be left on her own, not needing "anyone to entertain me". She has always been rather less social than many so it's not as big a deal with her as with some. Nonetheless, when we have company or when we take her out - to a concert or park or zoo, etc. - she smiles, initiates some small and routine interactions, obviously enjoys watching and engaging with small children, etc. But mostly, she seems to just want to be included on the periphery. I think observing and smiling and enjoying is her current form of socializing - very little of it verbal. So I think you're right when you say this is part of the disease, and I think you're on track with some of the reasons, too. We find it more useful to figure out how to let her enjoy the people around her without requiring her to be the focus of attention. Many times people try too hard to engage her when a simple handshake, eye contact, and exchange of names is sufficient. After that, they're part of her tribe, even if she can't remember their name, and as long as she is surrounded by members of her tribe, she feels safe and happy. To give her an antidepressant for any of this would be a copout at least, and malpractice at most. Just wish we could provide her with more frequent exposure. But going out is still quite a logistical challenge, and frankly, my husband and I are not all that social either. But my key point is that reduction of social behaviors is not equal to depression necessarily. Even without dementia, I find myself cherishing quiet times alone more and more as I age. And if anyone tries to give me an antidepressant, they will not find me compliant.

@caregiver49

I think you are correct, in some cases, at least. Here's what I've noticed:
My husband is several years into some sort of dementia, and I have noticed that he is more withdrawn in most social situations. He is aware that he no longer processes thoughts like he used to. In addition to that, he has become very, very sensitive to noise, especially sudden and/or sharp noises, and when we are with others at a restaurant or coffee shop or bar, for instance, where plates or bottles clank or children scream, he just can't stand it. So, when we are out with others, and plates clank, or many people are talking at the same time, or someone laughs too loudly, it really throws him off. He loses his train of thought very easily. These things plus the fact that he is aware of his cognitive decline have made him less social than he used to be. He has become quite insecure. And, no, he is not depressed. Occasionally he becomes sad about what is happening to him, but it never lasts very long, and cannot, I think, be classified as depression treatable with medication.

There are times, however, when I wonder if he may need something to help him deal with anxiety, agitation, and restlessness - symptoms that have shown up very recently. We're not pill takers, and I'm not a fan of big pharma, but I'm beginning to consider asking about something very, very mild, with few or no possible side effects, if such a drug even exists. If you or any of the other caretakers are familiar with something that might work for him, please comment.

@macbeth. Do you know anything about medical marajuana? Have read some about it and will try to find some verifiable results of efficacy. My thought is if smoking constricts blood vessels it can't be good for an already compromised brain. Maybe if used as a tincture or oil in tea it might be relaxing without the exposure to drugs with harsh side effects. I think it might be easier to gauge if a person could use some short term help to relax if in fact that is what it does. I have read there is Medical Marajuana that does not contain whatever causes the high. I have no idea if this is something to try or not. Just looking for ideas like everyone else has. I can find little evidence that tracking down a diagnosis or naming brain diseases like AD, Small Vessel Disease of the Brain, Chronic Fatigue Syndrome, Fibromyalgia etc, lead to help. Lots of tests without direction after the strain of exploring possibilities is difficult to accept. People who live far from specialists who rarely have answers in the end leave families wrung out and may cause more stress than value. Just my thoughts. All input appreciated