She appears to always want my full attention and for me to never leave the house or the room she is in. It's about suspicion, shadowing and control. My thought life is all about her and what will keep her happy. I walk around either annoyed or guilty. During most of our 54 years of marriage I focused on my career and that gave me an out, but since I retired I have nowhere to go emotionally. Looking for suggestions.
Suggest that caregivers come in,
and that you get 30-40 hrs. a week away. Some retirees volunteer, or even return to part-time work.
Get your thought life sorted out, because even if you are not there actually doing the caregiving, the intrusive thoughts are just as stressful, or more so.
Take a class, take care of yourself. Change your thoughts.
I suggest you read this 33 page booklet (which is a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.
Understanding the Dementia Experience, by Jennifer Ghent-Fuller
https://www.smashwords.com/books/view/210580
Here is a list of useful tips from her e-book I found to be excellent:
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Care Needs
· Recognize that receiving personal care feels intrusive
· Reassure with your tone and manner
· Do one thing at a time
· Talk through the care “play-by- play”
· Be aware of your body language and use it to communicate relaxation and reassurance
· Be sincere
· Use a soft, soothing touch
· Be aware of the individual’s unique triggers
· Be aware that a person with dementia may not accurately judge whether a situation is threatening to them
· They may respond to fear, pain or anxiety by defending themselves with what we call “aggression”
· If they become distressed, stop immediately and allow them time to calm down – don’t try to restart the activity right away
You need to change your behaviour to adapt to the dementia because the person with the disease cannot.
Another good book is Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's, by Diana Friel McGowin. Learn all you can about AD/dementia b/c knowledge is power!
You may want to hire in-home caregivers now, for a few hours per day to start, to allow YOU to get out of the house & to acclimate your wife to the process of having care given to her/showers, etc.
Wishing you the best of luck with all you have on your plate.
My boss' wife was your wife's age and she also had Alzheimer's/dementia and as the Alzheimer's advanced she didn't want him to leave the house. Prior he could take her to a Senior day care center. Now he needed to find a caregiver that would click with his wife, thankfully he found one. That way he could continue on with his career without much worry. And he took over the night time care.
Would hiring a caregiver be budget worthy? That would free up your time. My boss took days off to play golf. To have lunch with his buddies. He would even go to the afternoon movies.