How do you find balance while caregiving?

my wife is in/close to her 17th year after diagnosis. her neurologist said she was “end stage “ because 99% of other people with this diagnosis are dead. physically, my wife is in great shape. but i don’t know what our future holds 😢

@monty002
According to the Alzheimers Association, folks with dementia can sleep up to 13-15 hours as the disease progresses.

@monty002 My husband sleeps all day except to go to the bathroom. It is 12:26 in the afternoon here and he is still in bed. I have to say that the mornings are when I can have some "me" time and do things that are fulfilling to me. But by 12 or 1pm I feel that I have to get him up and try to feed him though most times he will say he is not hungry. If I escort him into the kitchen and sit him down in front of the food he will eat it. He is at the point where visual clues are more meaningful than words. Sleeping a lot is common with dementia especially at the state that he is in. Stage 6 on the FAST scale. I think that there is only so much that his brain can process in this stage so he needs to go rest and sleep to build up his brain strength again. We have been on this journey for 2 years now. What has helped me a lot is posting on this site and learning all I can about the various forms of dementia and the caregiving that is part of that journey. Teepa Snow is an expert in dementia caregiving and has many online classes, podcasts and resources. To me knowledge is power. When certain things happen I can recognize them as part of the dementia process. I have also learned how to work with the skills my husband still has rather than trying to get him to things that he no longer is capable of. I hope you keep posting here. There are so many people that are in the same situation and can share their experiences. You are not alone.

@ocdogmom Thank you for the mention of the FAST scale. As my family goes down this road we need all the information we can get. That helped so much.

@tunared, I cannot imagine caregiving for 17 years. My wife suffered with dementia for six years, I only wish that she were still here for me to care for. You have to be a very strong person - and have a lot of support, I know what it takes to provide the love and attention it takes to keep your loved one safe and comfortable, let alone keeping yourself afloat. All the best to you, you must be doing all of the right stuff.

@dedhambeth The FAST Scale was developed primarily for Alzheimer's dementia patients but it is useful for other dementias as it describes what the level of functional ability remains and the progression of the various stages. My husband does not have Alzheimer's but probably vascular dementia. Alzheimers usually progresses differently than Vascular dementia.
It has helped me to see where he is and what the next stage will be.

My husband's diagnosis , made by a geriatric specialist, is "mixed dementia, predominantly Alzheimer’s “.
Because this disease is so varied and often “mixed” we cannot expect definitive stages of progression .
Very challenging ! This discussion forum is immensely helpful as we learn from others’ experiences.
Expect the unexpected.

@4goakley You are so right that there is "mixed" dementia. The behaviors on the FAST scale are meant to provide caregivers and providers with an idea of what skills still remain and therefore how to make an appropriate plan of care to address the deficits. It is not meant to be a diagnostic tool. I see some behaviors on the FAST scale in my husband but not all in a given stage. Comorbidities can also give a false impression that a person has entered a more progressive stage. For instance, in the last stage, the person cannot walk on their own. But this is true also of someone with dementia who has fallen and broken a hip.