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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?

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This is another progression in the long road of dementia. I would definitely let her doctor see video of the new behaviors and ask if there is an appropriate medication to help calm her agitation. It may take some trial and error to find what works. This phase will pass one day for a new, and likely sadder one. I would also get a helper in part time, to get you some relief and get her used to accepting help from others. She can think of the helper as a friend to spend some time with. I wish you all peace in such a difficult time.
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This sounds like OCD behavior that is common with dementia. Speak to MILs doctor about it, but the behavior is not harmful and will likely change in time to something else.

Best of luck to you.
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TouchMatters Nov 20, 2024
I did not know that OCD is common with dementia.
Thank you for mentioning.
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Some, exspecially women when the dementia declines, start doing things like you described with the napkin. They want busy work, like we women always do , but mil just doesn't know what to do with herself.

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!
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Wthr1me Nov 13, 2024
Yeah. A few weeks ago we were going to her sister’s house. We got out of the car and I turned to close the door. She tipped over. No other way to explain it. I tried to grav her but couldn’t reach in time. She fell right into the arm she held the cane with and still, tipped over. Knees didn’t bend. Arms didn’t flail. Just tipped roght over and barely did so without landing face first. Then she didn’t even try to get up.

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.
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There is more going on here than difficulty with walking. This is sounding a lot like Parkinsons or Lewy's Dementia with often manifest with hallucinations, and with this sort of OCD repetitive stuff, balance issues, etc.
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.
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TouchMatters Nov 20, 2024
Good advice and support (similar to mine). Gena
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I'm sorry, but the time to talk about this in almost too late--her behaviors can be analyzed until you're dizzy, but the actual truth is probably simple (well, not simple, really) but the fact that she is going downhill, mentally & physically. It is hardest on those who are close to her to see it.

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.
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She shouldn't be left unattended. If you refocus the walking, it'll just be something else. Meds might help. But even with meds, you really need eyes on her all the time.
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I find a cane is not suitable support to help me with walking when I have difficulty.

Try to keep reminding her to use the walker. Set it right in front of her when she is sitting, or next to her. When someone stubbornly tries walking without assistance, there is not much you can do to prevent falls. She will likely just have to fall.
You can try to safeguard the house; make sure there are no sharp edges, glass furnishings, furniture that could fall on her, rugs or uneven floor surface to trip over,... etc.

Anxietynacy has a good idea, suggesting you give her busy tasks, hopefully things she can do while sitting. This will keep her busy and might calm her brain if it is repetitive. When she tires, make sure she is in a quiet, comfortable space so she can rest. In fact, anticipating in advance, and assisting her to her bedroom at the same time each day will also help. A consistent routine is very helpful, as her brain struggles to make sense of everything around her.
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TouchMatters Nov 20, 2024
A person with dementia isn't 'being' stubborn.
Their brain cells have died and/or are dying.
People with dementia are doing the best they can with limited cognitive abilities, if any.

So ... putting a cane in from of her likely won't make any difference.
This woman needs to be in a facility with 24/7 care and/or with a care provider 24/7. She cannot be left alone.
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Her disability / condition is more than just re-directing 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 !)
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Those behaviors are not dangerous to her for the most part. However, they do point to a change in her mental status. I would recommend a telehealth or in-person appointment with her doctor to address this.
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You should consider daycare, they pick her up and drop her off at the end of the day. She needs constant oversight. That way, her caregivers can work during the day.

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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KimberlyO Nov 19, 2024
For cognitive reasons, I think this is a bad idea. I think for everyone's peace of mind creative solutions should be sought to keep her living in place as long as she physically can. Care in facilities is never as good as a loving home environment.
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MILWD & FILWD live with us. We both WFH and cannot be at their side 24/7. We have multiple cameras set up so that on days Dad is having more trouble walking, we can intervene as quickly as possible. He will sometimes use his walker; try normalizing that as much as possible. We have a caregiver in 4 days/week to help while we work and so I can turn off the cameras and live life in longer timeframes than 10 minutes at a time. While facility placement may be your best option, the ratio of caregiver:dementia patient is not such that there is a caregiver within reach to prevent every fall either. The urge to move continues beyond when their body can no longer do it well as explained by our palliative nurse. That is when the falling stage begins. We medicate Dad at night to help him stay in bed more safely as much as possible. When the falling stage begins, we will need to medicate more frequently. Our chronic mantra when looking at these various behaviors is "Are they hurting themselves? Are they hurting others? Are they hurting valuable property?" This is a horrible terminal disease and should be viewed as such, not just as "Grandma has a little dementia". I have found this website, Alzheimer's Association and our local chapter of Dementia Alliance all extremely helpful in trying to understand as much as possible. Caregiving through this disease is not like other diseases and it takes a lot of dedication and grace. Bless you for loving the person in front of you as best you can. Hugs and strength to you and yours!
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Wthr1me: Pose your concerns to her neurologist.
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Be available for her an hour before to an hour after sunset, walk with her till she tires then push her in a wheelchair to keep the "going somewhere" going. Take turns with husband to be on call for her getting up at night. Check for bladder infections!
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