My mom and dad were perfectly healthy until July 15 when my dad fell in his barn. He's paralyzed now and in a wheelchair. However, he's making progress. He has a strong chance of walking again and possibly being able to use one of his arms. My mother had early signs of memory loss and occasional moodiness before this, but now she is acting insane. My sister and I have tried everything to calm her down even though it's my dad who's also deeply suffering. I tried being her home health aide full-time and living in the house. She was still mean, stressed and prone to emotional outbursts.
Then my sister and I took turns being health aides. Still the same reaction.
Finally, we found a home health aide (second) that she hasn't tried to get rid of but she doesn't treat her well and wanted to fire her the first week.
My mother has a reputation in the community for being sweet, funny, loving and charming, although I have seen other sides of her my whole life. It seems she only reserves her outbursts for certain people--those she think won't leave her. Now my father is a recipient, as well as my sister and me. I stayed with her for three months while Dad was in the hospital and she called me her angel. Now, I have learned through our home health aide that she doesn't want to see us and my father does, which is heart-breaking for our family. My sister moved here from Boston six years ago to be closer to them, and I moved back here two years ago from a city only an hour away and renovated a house, so that I could be close to them because I had a feeling something was going to happen. They always wanted to see us, and were so happy when we were all in the same place. This happiness didn't last for more than a year and my heart is broken. We were such a close family. My father's heart is broken too because he was always a strong man who could stand up to my mom but is too tired to fight her on seeing us. According to our home health aide, they fight about this frequently which is why we don't receive any invitations to their house just 10 minutes away anymore, and are always inviting ourselves over (we check first) to do things for Dad or help Mom and make dinner for them. She always complains about us when we leave. My sister fixed her stereo upstairs in her studio so she could listen to Christmas music. It took a couple of hours. When she left, she screamed to dad, "She touched my things!" She is getting really bad. I have no idea what to do. She obviously needs care but she has set herself up as dad's primary caregiver. Twice she's thrown things at my father who can't move his hands or get away. She's also been verbally abusive. I'm worried about his safety. But he will never leave my mother--their worlds revolve around each other and she is the most important thing in his life, he's said numerous times. She obviously needs help. Any advice would be welcome.
Don't let your emotions take over here. Realize mom isn't mom anymore and YOU are the voice of reason now. She needs to see her doctor for meds to calm her down if things keep going south. Ideally they'd both be in Assisted living together where help was at their disposal 24/7. That may ultimately be forced upon them if something happens where one of them gets hurt and the hospital refuses to release them back home to live alone.
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
Best of luck to you.
When you have an aide that is telling you she doesn't want you here and they fight because of you...it is a perfect opportunity for that aid to isolate and exploit your vulnerable parents. Not saying that is what is going on but, I wouldn't give that opportunity myself.
You and sister can show up at random times, random days, multiple times a day and bring something you know your mom will enjoy and be a presence and encouragement for your dad.
Touching her stuff, helping out around the house is optional, being present is not.
Dementia is a terrible disease to deal with and often there is no figuring it out. Just loving them, being present as an advocate and ensuring their safety is about the best that can be hoped for.
Watch some Teepa Snow videos on YouTube to gain some insight on how and what you are dealing with. Might not improve the situation with mom but, you guys will be empowered by the knowledge.
Best of luck and prayers for all of you.
Your parents may not be able to live on their own anymore. And its not fair to Dad, now he can't defend himself, to deal with Mom. If she again throws something at Dad or strikes him, the aide needs to call you and you call 911. Be there when the police arrive and demand 72 hr evaluation, I think its called the Baker Act. And this should also happen if Mom hits the aide. This way Mom will be forced to get help. I would also tell the doctors seeing her, that if she needs 24/7 care she will need to be placed in an AL or LTC. That your father cannot care for her and you can't care for both of them.
If your dad is not safe that might be the only option.
Safety is not just physical safety it is mental, emotional safety as well.
Has mom gotten an "official" diagnosis of dementia?
Is anyone POA for either of your parents?
Can you set up cameras to monitor what happens when the caregiver/home health aide is not there?
If you do not want to go the Guardian route just yet reporting possible abuse to APS might get another "neutral" party in to assess the situation.
And just keep going to their home as your father needs you now more than ever. Don't worry about what your mother says about it after the fact or even while you're there, as her brain is now broken and will only get worse.
I also love the idea of putting cameras around the house. Blink sells some fairly inexpensive ones that have two way talk, so you can hear what's going on along with them hearing you if you talk. Because as the saying goes...a picture says a thousand words, and that way you'll have proof of exactly what is going on.
I know one isn’t supposed to agitate the dementia person , but when dad started rationing pain meds because she kept spacing the prescription refills ( or pick your snafu there were many ) I did what you’re not supposed to do and marched her around the house and INSISTED we get that prescription paperwork found. It was not fun but he got those meds filled. This is just one example.
Basically once mom’s behavior caused dad more physical pain and harm I found it necessary to be a total hard-a** and prioritize Dad’s hospice over mom wanting things her way. She was not happy but her wishes to feel good for herself couldn’t steamroll over Dad’s pain management. I had to out-stubborn the most stubborn person imaginable.
Sometimes one has to pick who needs the help most and the chips have to fall with the other person. It’s really a lousy situation. In the end mom ‘won’ and Dad had to go to hospice in a hospital because she kept meddling in the home care. But I don’t regret getting Dad’s meds come heck or high water . Fyi I also just barged into the house whenever, but they were used to that from me!
I don’t know enough about APS but that could be an option. Another complication was Dad also never wanted to upset mom so they were enmeshed that way. So much suffering just to placate one person! I’m here to say it’s okay to take the bull by the horns in emergency cases.
You’re in a really stressful situation so I’m sending huge hugs and best possible outcome wishes for you and your family
PS Edit; I wasn’t mean to my mom but I realllllly had to put my foot down & hold the line so to speak. Repeatedly . We are still on good terms
Please don't take her frustration personally. It's not her fault.
This is a grieving process for you, your dad and sister. You are slowly losing your mother to this horrible disease. Get help for yourself so that you can handle this difficult situation in the healthiest way.
With advancing dementia, mom cannot be allowed to remain in control, her brain is broken and there is no reasoning with an elderly dementia sufferer. Your dear dad needs to be rescued but in a manner that saves mom's dignity, for his sake and for hers.
No idea what the situation is with POA or any of that, but you and sis may need to obtain something along the lines of an emergency, temporary (or permanent) guardianship in order to intervene and with any abuse in their home, a judge will easily grant this. You can do this through the court via the state court website self help center where all of the required papers and instructions are found.
An attorney for a temp guardianship may cost upwards of 20k or more so, another option is to call APS and report the situation and they may take this to court for same - allow the county to navigate the court and many of the costs are waived and not a drain on your parents' assets.
You need to act swiftly as this is getting worse, to the point of being an emergency. You're in the slow spiral and with the gradual changes, you're not seeing it as the emergent situation that your post conveys it to be, to someone looking at this from the outside.
I wish you and your sis all the best in doing what is needed for your beloved parents.
I can only find the term home health aid.