my mil has dementia from a stroke she had 10 years ago. She did well for a long time and mostly it wasn’t dementia so much as difficulty remembering things and speaking. We later discovered the fall at the stroke damaged one ear drum! She later began hearing voices and is on the meds to for that.
fast forward a few years and my husband and i purchased a house in her neck of the woods and moved her in with us. Actually she moved in before I did!
now and them she has begun forgetting where she is, which was a concern of mine. But once we explained, and she couldn’t remember where her bedroom was, i wqlked with her in that direction. The relief in her voice when she finally saw her bedroom door did something to me.
so anyway, she has begun repetitious behaviors. For example, the other night i watched her push her tv tray from in front of her, stand up, fold her napkins and reposition them, sit down, then do it all again. She did it about 10 times. I didn’t say anything but plan to send the video of the last one and look for med advice.
today the behavior is walking. Sits, pulls in the tv tray, rocks 2x, pushes the tray out of the way, walks two rooms away and comes back, sits, and it all starts again.
Any advice on the walking? Its a bit scary because she isn’t physically adept. Gave her a cane she carries but will not really use. Refuses her walker. I cannot be in the room with her all the time, because i work from home, and my office is in the basement. Hubby does all shopping and vehicle trips.
any ideas on how to refocus the walking?
She has dementia. And dementia affects different parts of the brain depending on what kind of dementia it is, i.e, could be Alzheimer's.
* She needs 24/7 care. Her needs are way over your (educational / experiential) head - and this isn't a criticism at all - as family members caring for a loved one are not trained on how to manage / cope with a person who lost / is losing their brain functioning.
Most are thrown in a situation that they are totally unprepared to manage. and, as you say 'it is scary.' It is devastating and overwhelming for everyone involved.
What to do:
First, is she diagnosed to be unable to care for herself / her own welfare? You need medical documentation to get going.
- You then need to get all legal documents in order.
- Hopefully, she isn't allowed now to manage any money, have access to phones or internet.
- Get 'bells' on her bed or on her so if she is alone, until you get things in order (caregivers), when she walks or leaves, you will hear her ... this is if you are home and can hear her.
* Go to Teepa Snow's website; do her webinars (I did for almost two years), read her (and others') books ... watch her and others' You Tubes on dementia.
* If my mother or MIL, I would get her into a facility as soon as you can. Call them / do your research to see what is offered in her price range. If she doesn't have $, see if Medicaid or gov't assistance can help / get her into a nursing home.
--- be sure to keep accurate financial records and do not co-mingle finances. If she is entitled to any gov't benefits, her income must be kept separate.
The bottom line is that you cannot continue on like this - if you want a life of your own. You will be on 24/7 care duty ... or even 40 hours / week ... and need to find caregivers when you can not be with her. She likely needs to be placed in a locked memory care unit (this is the population I worked with for a few years).
* Her brain functioning is 'making' her do the behaviors she does.
* Her behavior is not unusual; dementia changes a person's brain and there is no knowing what they may do ... or even how they are 'thinking' inside their head / brain ... (I've often wondered ... what is going on in there?)
* She doesn't seem to have the ability to understand that a cane or walker is to help her ... she doesn't get it that she might fall and injure herself. She cannot 'think' like that.
What has worked for me:
As you will learn with Teepa (or others), non-verbal communication is key -
- never argue.
- make eye contact
- smile
- use a soothing voice / tone
- touch as it is accepted / wanted (hold her hand, rub her shoulders)
* She might have hallucinations (you indicate she already hears / heard voices and is now on medication for this)
* While she is with you, 'do' give her napkins to fold ... then when she is done, shake them out and let her fold them again. This is what she needs to do.
Know that this is very difficult for family members.
If you do not take care of yourself, you will burn out.
Your husband will burn out; your relationship will change.
She needs more care than you can manage. Initially get caregivers in. Tell her they are your 'friends.' Ease them in as best you can. She may resist help from strangers ... so see how things go.
The only way to re-direct her walking is to :
1. Walk with her or someone does
2. Do not allow her to walk w/o someone with her
3. Lock doors so she cannot get out by herself.
When you read about what dementia is and how the brain is affected, more will make sense to you, and the care she needs.
Here's a hug - let us know how you are doing.
Gena / Touch Matters (I'm a massage therapist - gentle touch can be very healing for her - and you. Get a massage !)
The repetitive behaviors are a symptom of something deeper than just cognitive decline. She needs to be evaluated for a higher level of care than you may be able to provide at this time. Or perhaps you need to hire a caregiver to come to her in your home, relieving you of constantly having to keep an eye on her.
As you stated, when she fell out of the car, she was incapable of helping you help her. When that kind of disconnect in thinking happens--well, it's time to look to the near future and see what options you have.
In my MIL's life, she completely took over her 3 kids' lives for about a year. Only at the very end did they finally agree that she was too much to care for at home. Once they had her placed in a lovely SNF, they found out she was waaaaay past being cared for there and they were in the process of moving her to Memory Care, when she passed. The kids blamed themselves for allowing her to get so bad and for being so blind to her true needs. Right to the end they were all jumping through all her hoops.
Possibly a med for agitation could help. That's all my MIL ever took--various benzos for daily use and stronger ones for bedtime.
She was kind of stoned for that whole last year, b/c it was the only way they could keep her at home.
You could give her laundry to fold, or silverware draws to organize.
Honestly, your mil may need more supervision in the very near future. I highly doubt at this point she is going to remember the cane. No matter how many times you tell her.
So sorry!
in a way, it is good she didn’t try to catch herself, but my husband had to lift her entirely because she wouldn’t move a single muscle. She was conscious, but not willing to respond. She was horribly embarrassed even though it only happened with family around. No strangers. She barely spoke all evening, but played cards silently.
Best of luck to you.
Thank you for mentioning.
What you need first of all is the good neuro-psyc exam.
You need to be sure all POA paperwork is in place if she is still competent to do this.
I dearly hope that this move, to purchase this home, is something you would have wished to do, a place you wish to live regardless of Mom's condition, because it does sound as though her dementia is progressing rapidly. I think this is something other than her difficulties post stroke.
You need first of all a diagnosis.
Then you need to decide how long you can go on with care that really requires the help of several shifts of several people each.
If this is coming from Parkinson's or Lewy's I hope that you are/have been aware of mom's wishes for end of life. Eventually there will be swallowing dificulties that may require decisions on whether or not she would have wanted tube feedings to sustain life. I would not and have made all of that clear in an advance directive. I will hope she has. If she has not it may be too late, but it is not too late for you and hubby to think in terms of these things for yourselves. They should be done when you are well and able to discuss and direct these things.
I am so sorry. This doesn't sound good. Do think of doing a urine test at home; ask your pharmacist for a dip stick that indicates presence of nitrites, leukocytes or blood in urine. Then take clean catch specimen to doc office or lab as directed for culture of urine.
I am wishing you luck and hoping you will update.
You don't need to be afraid to ask anything here, but I am afraid you do need to be afraid and I think you already are. I am so very sorry.
If that's not an option, you should consider a placement for safety reasons, among other things. Dementia will progress. This is going to become more and more responsibiilty.
I'm sorry, it's very difficult.
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