I am not the main caregiver for my mother, but I help with her a lot. I have two other siblings. Sibling 1 is the main CG , sibling 2 rarely spends time with her due to work and other family obligations. My question is: my mother's doctor gave a blanket diagnosis of dementia and senility but we haven't received any further medical advice, etc., if any exists? What is going to happen? We see her getting worse daily, weekly, monthly. She can't remember one minute to the next. She constantly will count her "jewelry", ( no one ever comes over and she only has a few pieces anyway, not worth much), she thinks things are missing. She loses and misplaces everything all the time. When I'm there I protect my phone in fear she'll misplace that! She thinks things are said that wasn't. She says things that aren't true and there isn't one thing that she can do to take care of herself in the real world. Oh she can put a mug under the single dose coffee maker and then forget which button to push ! Forget We can't trust her to cook, she misplaces everything in the house, I mean everything! At this point if she stepped out the door, walked down the street, she would be lost and we'd have a silver alert! It's exhausting. Also her personality is NOT what it once was. She is mean AF sometimes and I have to bite my tongue and walk away. My sibling, CG 1 is very type A and I know she's getting burned out. Although I help out and CG 2 when possible, it's not enough. She's a full time, ( sometimes OT!), job. We don't want our mother in a nursing home which was our original agreement and hasn't changed (for now), but what if any alternatives are there for relief from being our mothers only caregivers? P.S. she's very stubborn and paranoid about people coming in to her house. So tips are helpful please, ty.
Your Mom is definitely midstage or beyond and should not be left alone. She is now 24/7 care. If not already incontinent, she will be. Do you or your sister want to care for her 24/7? Dementia is not like they show on TV. The Caregiver and the aide all smiles and getting along beautifully. Or those old TV shows were grandma is rocking in her rocking chair smiling away and looking at the wall. Its very unpredictable and you have no idea what they will do from one minute to the next. Its like caring for a toddler. You are on ur toes 24/7. No sooner did I finally get to sit down, and Mom would be calling me. You have to be ready to give up your life. It will get where she is too much for one person to care for. Wait till you have that BM blow out that takes you hours to clean up.
Yes, the last thing u want to do is place them but at 65 and retired, I found I was not a Caregiver for an 86 yr old. I had raised 2 girls. Helped raise a grandson and at 64 was watching an infant. I had always been there for my parents. The boys couldn't even pick up a phone to say Hi. Rarely acknowledged birthdays, Mothers and fathers day let alone send a card. So at 65 I just did not have the energy to care for anyone 24/7. So, never say never.
”Senility” is a VERY old term, and since mom’s doctor has used it to describe her situation, ASK HIM what he means when he uses it.
”Dementia” means all of the behaviors you’ve described and more. She is not being “mean”. She is responding to you with ideas from a damaged brain, and she has lost the ability to filter what she says.
Same with thinking she hears things that weren’t said. What she hears and says are what her damaged brain is telling her.
Your mother has a disease in which there are few “happy endings”. Taking care of a dementia patient is difficult, exhausting, endless work.
It will help the three of you to learn as much as you can about her condition, then make a realistic and manageable plan to keep herself. That plan may well require residential care, so you need to know the way care is set up in your area, what will serve your mother in the SAFEST and MOST HUMANE way, and how to pay for it.
With these facts in mind you may be able to start to decide how long you can safely and comfortably continue her present life WITHOUT making yourselves I’ll in the process.
Hoping you are able to come up with some tools that are helpful for her and the three of you.
who has medical POA ? Who went with your mom to dr when diagnosis was given. If Dr wanted a follow up , that person should know . Who has HIPPA privileges ? That person could call Dr s nurse and ask what’s next…
It sounds to me that if all legal papers and such are done, time for incapacitation. If they are not done.. get it done ASAP.
things do not get better from here…
I suggest you read this 33 page booklet ( 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
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 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
She also has published a workbook entitled, “It Isn’t Common Sense: Interacting with People Who Have Memory Loss Due to Dementia.”
https://www.amazon.com/Isnt-Common-Sense-Interacting-Dementia/dp/1481995995/ref=sr_1_4?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468655&sprefix=jennifer+ghent%2Caps%2C631&sr=8-4
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 behavior to adapt to the dementia because the person with the disease cannot.
Wishing you the best of luck with a difficult situation.
Do your own research.
Go up to the blue/green bar at the top of this page.... click on CARE TOPICS.... and find Dementia. There is a store house of articles that are very helpful.
"We don't want our mother in a nursing home which was our original agreement and hasn't changed (for now)..."
Maybe that needs to change. It seems pretty obvious that your mother needs 24/7/365 supervision. If CG1 is doing more and more, that is not right, and of course she's becoming burned out. If your mother refuses to allow caregivers into the house, then facility placement it must be.
Who has POA/HCPOA?
Hopefully, someone has PoA, Medical proxy and there is a Will in place. If not and if you have an attorney who knows the family really well, you just might be able to get those documents even now. Without them it will be difficult to handle Mom's finances or to get medical information from doctors on her. And when and if placement is needed you will need the PoA to sign agreements for her.
Your Mom's brain is broken. It can not think as it used to or as you and your siblings do. When I was caring for my Mom who had stroke induced dementia, her doctor gave me a great book, "The 36 Hour Day", which I found very insightful even though I was working in LTC admissions.
In addition to getting those very important documents mentioned above in place (like........ yesterday) I would suggest you contact the Office on Aging in your Mom's area. They are a great resource and can provide you with the names of organizations and support groups to contact.
It may be time for you all to evaluate where you are in terms of that "never in a nursing home" agreement made years ago. Sounds like you all want your Mom to have good care but there sometimes comes a point when you can not provide it (you and your sisters are going to burn out quickly). It may be time to see if Mom is eligible for some time of Medicaid (depending on the state in which you live) assistance for caregivers. Know that this road is hard and it gets steeper and more rocky with time. I would begin my research now into facilities with MC. Will it be like home? Not really in spite of what they tell you but she will be space and will have people with medical training with their eyes on her (not 24/7 unless you pay extra). And just as important, you and your siblings can go back to being loving children and not burned out caregivers. And in actuality, in their right minds this is what loving parents want for their children
I'm sorry but she should not be left alone for hours and hours like it sounds like she is. Are there any arrangements for anyone to be with her on a regular basis? I would give up on the old promise of "no nursing home". I used to say that for myself - no way! But now after dealing with my mom I say, no way am I putting my kids through that B.S. If I'm unsafe on my own, then I should be in somewhere to be safe and taken care of without ruining my kids lives.
Start with a cleaning lady. A cook. A laundry lady. That is actually there to keep her eye on mom and help her with EVERYTHING. She doesn't have to like it or agree with it. But it needs to be done for her well being and safety.
There are adult daycares if she refuses someone in the house - bring her to one every day to keep her safe etc.
You siblings need to decide and put things in place ASAP. If all else fails, she will have to be placed.
Do not expect her to participate and to be happy. This is not about her being happy but about her being safe and taken care of.
Good luck.