Primary caregiver 89y mother w PSP -P and 93y father with age related hearing loss, mod dementia. So ANGRY about the soul-sucking neuro
dysfunctions and care I don’t want to see them. Mom in AL but have to take care of personal care they don’t. Dad pities himself for declining abilities not accepting them. I handle ALL finances. ALL medical issues. brothers far away that would help. Another interferes with all aspects of care as he doesn’t accept or know about mom’s diagnosis and refuses to review the info I send to learn about it. The communication and impulse issues with mom are pronounced. She can’t hear, see or speak. Limited mobility by walker but OT keeps her moving to try slow decline. She has some disease related cognitive issues but she’s still “in there” trapped. I’ve been doing this for 7yrs with her. Watching my beautiful loving kind generous mom disappear. Dad is home still refuses all help cause he doesn’t accept the limits and does pretty well but now the dementia worse he forgets so many things.turns phone off then forgets to turn back on so we have to constantly do home safety checks. Refuses to wear his hearing aids then gets mad when we I ask him too cause im tired of repeating myself and yelling. It’s a constant battle with both and the challenge of Care exhausting and overwhelming. Christmas was the worst one ever! I brought them together at his place Xmas Eve. Struggled with mom to the car to the house to/from the bathroom feeding her etc. bought prepped cooked served cleaned up a nice dinner. Watched football game. TV so
loud mom was agitated and upset by it then Dad got ticked cause I reminded him about his hearing aids. But we made it through on a good note. My hurt and anger?? Neither of them thanked me, hugged me, called me texted me NOTHING! After or on Xmas Day. Devastated by sadness that my beloved parents didn’t CARE enough to remember their oldest child, only daughter and long time SOLE caregiver these past 7 years by making a quick call, sending a card, message SOMETHING on this special occasion. I know it’s selfish. I know Moms disease causes apathy and they are both changed by their aging issues but damn it HURTS that they neglected and forgot me for the first time in 69 years. The anger sadness I’m feeling literally making me sick
how do I accept this horrible feeling of abandonment? I know it’s not personal not their fault. but it IS personal and it hurts so much!
This is a tough time. Im struggling with this — it is the worst situation I’ve found myself in, and I’ve had my share of sadness in my 67 years. I find reminding myself this is not who my parents would choose to be and recalling happier times with them helps me get through some of this.
It ain’t easy. Hugs 🤗 to you.
I suggest you read this 33 page booklet 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
Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.
The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2
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.
I lost my mother to dementia in Feb after 6 years of dealing with it. I feel your pain. Best of luck to you, my friend.
Your dad's situation is a challenge. I would consider backing off and letting him suffer a teeny bit of the consequences of him needing but not accepting help. You will not be able to provide the level of care he needs so you might have to involve some authorities or wait until he ends up in the hospital.
About his hearing aides - I would back off. Let him suffer the consequences of not wearing them. Don't scream. Don't turn the TV up so loud as to give yourself hearing loss. Write a note and say you can't scream to talk to him. So write very short notes with yes or no answers. If he feels the inconvenience of not being communicated with, maybe he will put his damn hearing aides in. Or so many things you can probably just figure out for yourself without having to ask him anything.
Best of luck.