Since joining AgingCare over a year ago, my mother has been diagnosed with Alzheimer's. She is in otherwise in relatively good health, still competent, can drive safely in town (we are not comfortable with her being on the highway and she seems to agree) but is easily confused and frustrated with electronics, finances, user names and passwords, etc. She is not a reliable medical historian so we (siblings) attend all medical appointments and one sister checks her finances weekly to ensure nothing is amiss.
The sister who handles finances still doesn't grasp that mom cannot think clearly or remember things. The sister is getting increasingly frustrated with mom changing passwords, canceling appointments and messing things up after the sister, or us others, have taken time out to help or off work to attend medical appointments.
This week the sister went on a diatribe about needing to "punish" our mother for constantly messing things up by having her not drive the older grandchildren (nothing to do with safety, it is punishment because we know it is the one thing that makes her feel needed) to activities (this happens twice a week) or to punish her by not inviting her to dinner, etc. I listened to her rant and said that we cannot reason with Alzheimer's, that mom wasn't doing these things to make her angry and that the idea that she would "punish" our mother was disrespectful.
How else can I respond to this? We are a tight family but mom's behavior is super annoying and caring for her is time consuming and my siblings are tuning out or getting angry. I fear for mom - not for physical violence - but if she knew we were annoyed or fighting, it would break her heart.
She lives in an in-law apartment we built a year ago and all paid for in our brother's house. This was a decision reached when mom made it clear she would not move into a graduated care facility.
I fear a family feud and want to avoid it.
Many people are in denial about a loved one's diagnosis of ALZ, which is dangerous & not helpful TO the loved one who now needs help & understanding from the family (especially). ALZ is a challenge & will present HUGE challenges to all who care for your mother. You'll need to know what to do & not do in terms of care & management of her disease.
I suggest you & your sister read this 33 page booklet (which is a free download)
which has THE best information ever about managing Alzheimers/dementia and
what to expect with an elder who's been diagnosed with it. There is also an excellent blurb in the booklet about a suggested way to ease an elder into how to stop driving.
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!
Wishing you the best of luck with all you have on your plate.
The sibling that is taking care of financial matters maybe should be given a different task. Maybe that sibling should be taking her to some of the doctor appointments.
You can not change how that sister deals with mom's cognitive decline.
BUT for your mom to change passwords is not a good idea and I can understand how it can make sister's job much more difficult.
Is there a way to put controls on mom's computer so that she can not change passwords. I would also see if there is a way to restrict mom's access to her other appointments so that she can not change them. This must be frustrating for everyone that is trying to help out.
I think mom's cognitive decline is a bit more than you all admit.
I attended one of these several years ago; it was very, very worthwhile. It was free then, class size limited (I think there were 6 or 8 of us), and the class course documentation was well done.
At that time, the class addressed symptoms, recognition of them, and various responses to them. There were also a few puzzle solving exercises which forced us to "think outside the box." This was basically an analysis of a situation, options, which worked and which didn't, and apply the underlying techniques to interaction with an individual with dementia.
One section was a movie of a few women in care facilities, each of whom had dementia at some level. One woman was filmed making a sandwich, when she was fairly cognizant and could interpret instructions. Two or three more stages documented her progression, and in the last, she was unable to determine the use of a knife, bread, or how to assemble a sandwich. Some of us, including me, were in tears at that point. It WAS very emotional, but very insightful.
Another aspect that was very, very helpful, was to interact with other caregivers, learn what they were addressing, how they handled situations, and think about adapting different approaches for ourselves.
Perhaps b/c the course could be so emotional, the hosting organizations provided delicious pastries and coffee. Sometimes the sugar helped overcome the depressing topics, sometimes not. But the interaction was well worth the time spent.
It was so worthwhile that I still consult the manual periodically, just for myself as I'm no longer caring for anyone (my parents are both deceased).
If you an attend a session, pandemic notwithstanding, it's much better than just watching a DVD, b/c you interact with others, learn how they also are trying to cope, what solutions (if any) they've implemented.
https://www.alz.org/help-support/resources/care-education-resources
Search for Creating Confident Caregivers, and your state. I found a lot of hits for Michigan, but not for other states.
Another option is for her to attend a caregivers meeting/group, sponsored sometimes by care facilities and sometimes by large local hospitals. Again, the interaction with others is literally priceless.
Best wishes and good luck with explaining to your sister and getting her to understand the compromises and limitations dementia creates.
Oy. Not good in terms of avoiding family friction. But you didn't ask about that.
Tell your sister that your mother is not the only one who is being bewilderingly unreasonable, except that your sister doesn't have the excuse that her brain is disintegrating. Then give her a hug of sympathy and refer her to this link:
https://www.alz.org/national/documents/phase_4_home_care_recs.pdf
In fact, you'll find alz.org a useful resource in any case. That particular proposed code of conduct is intended for professionals working in domiciliary settings, but if your sister is a rules-y type of person I think she'll find it food for thought.
Does anyone have power of attorney? If not, oh dear. But in any case simplify simplify simplify. One no-frills account with no passwords (access to a bank?). One calendar, large, clear, wall-mounted; if your mother is still perfectly capable of changing appointments for herself and may have perfectly good reasons for wanting to, it isn't correct to prevent her from doing so but you need a mechanism for checking the details.
Many families try post-it notes and labels. The other week I was with a client whose home I shall always remember as "the house of cards" - notes, tips, reminders posted to every wall and cupboard door, and all quite useless.
Another family had put a sign on the wall over the toilet saying "DAD remember to sit down to pee!!!" And where does a man look when he's peeing into the toilet? - not at the wall, anyway. They should have taped the sign to the front of the cistern.
The art to finding ways and means that work for your mother involves standing beside her and thinking through what she is "thinking." Then you can spot the traps and pitfalls and negotiate ways round.
She is going to need an awful lot of support, you know. Is your brother (is his wife???) really prepared for this?
Your sister needs a swift check on reality of the disease and its progression.
What I encourage you to do with all of your siblings is join and attend an Alzheimer's family support group. The Alz Association has a tool on their site that locates chapters, in-person or virtual groups as well as countless resources.
Why I share this - Others will share their stories and challenges, whether past tense or present of their loved one's diagnosis, and it could help to paint a picture to your sister of what's on the horizon. It may even result in a regular gig for your family to connect on a deeper level and stay unified in the ultimate goal of keeping your mom out of a graduated care facility.
Perhaps this real anecdotal exposure from attending a family support group could grant her clarity on the disease, how others struggle and overcome challenges, and allow her the opportunity to amend her current response from corrective/disciplinary to a person-centered, inclusive and redirective response to your mother's Alzheimer's.
The current response your sister has to your mom's dementia related behaviors is simply not sustainable from a time and energy perspective. While a family feud is a very real concern, it is nothing compared to if she or another sibling were to develop 'caregiver burnout' this early on.
Last tip: Follow the dementia whisperer, Teepa Snow. She's an industry expert in dementia, alzheimer's and provides practical tips through Youtube/Tiktok that families and caregivers can apply in real life caregiving situations.
Keep the forum going! Share updates if you feel called to on how things are changing, improving or otherwise. Thank you for posting!
We had them in AL, all they did is fights because she could not follow the simplest directions and was unable to rationalize anything. If she saw her name on any piece of paper she would tear it up and throw it away, along with the car registration and all important documents.
He passed away, if he had not died we would have had to separate them.
Best to take the car away, no driving the grand kids around, safety first, whatever works do it.
I doubt you will convince your sister, in time, she won't have any choice, she will be forced to accept that your mother has a disease of the brain as this disease will progress, there is no stopping it.
I would let it flow, sometimes children do not want to accept what is right in front of them as they are afraid if they do...they will have to accept the truth, yes there is a chance of inheriting the same disease.
Alzheimer’s isn’t an on/off disease. You can’t be okay to drive but not okay when it comes to remembering basics.
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