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Parents resistant to needed change
ConcernedD
Posted: Sunday, April 14, 2019 9:53 AM
Joined: 4/11/2019
Posts: 2


My mom was diagnosed with Alzheimer’s in 2013. She has always insisted the diagnosis is wrong. She is a pharmacist and knows too much for her own good. She refuses to take any medication for Alz because she doesn’t have it. Fine. You can choose to do that.  However, she seems to have turned the corner and into the next stage of Alz. Most notably wandering. Also, I see other signs. Not buttoning shirt buttons, putting earrings in backwards, wearing the same outfit over and over. The police have been involved twice in the wandering episodes so far. My father is overwhelmed. He doesn’t want to quit working. He works part time. I can support that. But my mom is being extremely resistant to help from outsiders. I am unable to relieve my father for every day he has to work. She will accept help from me. But the day I can’t cover she is left alone for many hours at a time and this is when the wandering has become a problem. My father doesn’t seem to grasp how to deal with this. He tried to get someone to come on the day I can’t cover through Visiting Ángels but my mom threw a fit and screamed at him that he was taking away her dignity. My father caved. The wandering has continued. I have been pushing him, but he is unwilling to do anything that will make my mom unhappy because she will emotionally punish him if he does. Even if it is for her safety. 

I have reached out to their doctor. She has encouraged me to seek help from Adult protective services. I don’t want to start a war in my family.  But I don’t want my mom to be a casualty either. My dad has ordered a tracking type watch, but it has been on back order. It was supposed to come this week, but he has been contacted by the company that it will not arrive for another 4 weeks. I know he is banking that this will fix their problem, but I don’t think it will. He is too far away to keep her from wandering even if he is alerted. It would mostly provide him 

Help!  


Mimi S.
Posted: Sunday, April 14, 2019 10:47 AM
Joined: 11/29/2011
Posts: 7000


Welcome to our world, concerned. I am so glad you have found our site.

Your mom has anosognosia.  You will never get her to agree.  She has anosognosia.  Anosognosia is a characteristic of the dementias that keeps the patient from being aware that he has dementia.  


The wandering concerns me. Sometimes installing a slide lock at the top of all exit doors will work. For some unknown reason, usually the demented person does not look up to see why the door won't open.There are various tactics people have used to get the LO TO ACEPT A STRANGER. Tell mom she is a friend and have  her come andjust cat a few times while you are there. Then, an emergency crops up and you are called away. 'Friend" takes over.


Or, it's a friend in need of some work and having her employed will help.  Church or whatever organization she belongs to is providing help free of charge, whatever works. 


If financial ability is there, it's time to think of a Memory Care placement. She needs Memory Care because of her tendency to wander. 


Using Feil's Validation method has helped many. From your library get a copy of any of her books with the wore Validation in the title. It's not an easy read but well worth the time for all involved. You dod need to read the book. What you read on line is not sufficient.


Magenta Sunrise
Posted: Sunday, April 14, 2019 11:06 AM
Joined: 2/11/2019
Posts: 3


Do not get Adult Protective Services involved.  They will take control and force your family to do things you do not want to do.  Once the courts get involved, you will not have anything to say about anything, and you know your parents and what is best for them better than "experts" who are strangers and who have an agenda that does not match yours.
citydock2000
Posted: Sunday, April 14, 2019 12:00 PM
Joined: 9/7/2017
Posts: 757


I would not get APS involved so get your dad to do what he needs to do.  This will just ratchet up the emotional temperature and may remove any control your family has over your mom's care.  Also, how is APS going to get her to accept help?  If she's not accepting it now, APS isn't going to make a difference. 

What does dad say when you tell him mom can't stay by herself?  she is in danger, she could die. It happens regularly.  

If she gets mad, she gets mad.  And if he can't deal with her getting mad - there is no shame in that, my MIL could not handle my FIL and it led to his placement - then it's time to talk about placing her in a residential care environment.  

Your dad deserves to have a life.  Your mom deserves safety and care.  Both of these things can be achieved but you and dad need to get on the same page. 

We hired a geriatric social worker for a few hundred bucks to assess the situation - her warnings were actually much more dire than we had anticipated and it helped my MIL understand what needed to happen.  Sometimes hearing it from an outsiders perspective is persuasive. 

Forget about trying to persuade your mom, for the reasons mentioned above.  Dad needs to stop trying to persuade her that she needs help.  Time for whatever fibs he can muster and a thick skin when she freaks out.  

How are his validation skills?  I would make sure he is familiar with validation techniques, check out teepa snow videos. Thats the first start. 

I would start to check out memory care facilities on your own - don't tell mom or dad.  Talk to the staff there, get familiar with pricing, figure out if it's a possibility financially.  It's good to have your favorite one in your back pocket, inquire about waiting lists (the best ones usually have one), and even get her on waiting list (esp if there is one you like above all others and it has a list). You can refuse when you get to the top of the list if you aren't ready, and maintain your right of refusal for a period of time, or a certain number of refusals.  Looking for a facility when you need it is too late - start planning now. 

 


harshedbuzz
Posted: Monday, April 15, 2019 5:45 AM
Joined: 3/6/2017
Posts: 1346


I wouldn't bring on APS at this point in time.

Your area agency on aging may have some ideas about resources in your community that could provide care. Given your description of the behaviors she is exhibiting, she can not be left alone at this point so finding a workable care solution is critical to your dad continuing to work. 

Could you mom handle an emergency if she were home alone? Some time in stage 5-ish, my mother had an appointment during the time the HVAC company was installing a new system. I came over to stay with dad and to act as their point person around any questions. While they were welding something the smoke detectors went off. Dad asked me what that noise was and when I told him, he shuffled off to find my mother to save her because he forgot she was out. 

In addition to the ploys others have suggested, another sometimes effective strategy is to use a day program for care. Many people introduce it as "the club" or go there initially as a couple "to volunteer". One of the popular programs here has daily visits from the preschool program on-site, so people often sell the day program as "volunteering at the day care". There's another program here that offers adult care on a child care model for people who work- hours are 6am to 6pm. They offer showering, nail and hair services and have PTs and OTs that can provide services on-site if you need that.
NC caregiver
Posted: Wednesday, April 17, 2019 4:02 AM
Joined: 2/7/2018
Posts: 846


HAve you tried bringing a caregiver in on the days you care for Mom and introduce as your friend?   Then your friend could visit her on the day you can't be there without being seen as a hired caregiver.  Or might there be a family friend, church person, or relative who might be willing to help?
ConcernedD
Posted: Wednesday, April 17, 2019 2:27 PM
Joined: 4/11/2019
Posts: 2


My mother freaked out and screamed at my father that he was “taking away her dignity” when he arranged to interview someone to come stay with her on the day he needed help. Basically she is resistant to everything. She doesn’t want to leave her home. My dad is afraid if he tried to sell the house she would refuse to sign the papers.
harshedbuzz
Posted: Thursday, April 18, 2019 7:32 AM
Joined: 3/6/2017
Posts: 1346


ConcernedD wrote:
My mother freaked out and screamed at my father that he was “taking away her dignity” when he arranged to interview someone to come stay with her on the day he needed help. Basically she is resistant to everything. She doesn’t want to leave her home. My dad is afraid if he tried to sell the house she would refuse to sign the papers.

It sounds like your father isn't, perhaps, as aware of how impaired his DW has become. It's painful to lose your very bright partner in life. Accepting the changes in her means accepting how the disease will impact your own life and dreams for the future. My mom was like that with my dad- she was a little in denial about how the disease was impacting his ability to make good decisions and would defer to his moods. Plus she did not want to wrap her mind around giving up her cute winter digs in Florida so she could pay $28/hour to hire someone to get a break only to suffer the consequences of a pissed off husband when she returned. With this dynamic and dad's refusal to cooperate around medication and hygiene, placement became the only reasonable option. 

The short answer, your mom's safety is more important than her dignity. APS will become involved at some point unless your local first responders are asleep at the switch or you are some prominent family in a small town where these sorts of things are politely ignored. 

If your father has the right kind of POA, he can sell the house without her cooperation. 


MN Chickadee
Posted: Thursday, April 18, 2019 8:12 AM
Joined: 9/7/2014
Posts: 716


Are there any adult day programs near you? aka adult daycares. These can be a good stop gap to keep someone home while the care partners go to work or have respite time. They have activities appropriate for a person with dementia, outings, socialization and excercise. Use a therapeutic fib, such as the senior center needs volunteers, or she is signed up for a class there. Maybe have dad take some time off work and they go to the "senior center" together for a week and then he slowly starts backing out. "I have a doctor's appointment, I'll come back and get you after" etc. The staff are trained in dementia and should be good at redirecting her and with difficult  behaviors during the transition.

Or bring in a hired aide with a fib. Maybe you "gift her a cleaning service for her birthday, she works so hard and you want her to have a little break." or it's your "friend or someone  from church down on hard times, I am helping her out by giving her some money to clean." Hired caregivers would be familiar with dementia and willing to play along, take things slow at first. Maybe they do just some light housekeeping the first week or two, maybe dad stays home with them so mom doesn't feel like it's a babysitter until she us used to the person being around. Can he take some FMLA time to get her settled into something? It is no longer an option to leave her alone. 

The adjustment time to new things can be really rough on everyone. Getting my mom in her daycare and later memory care were extremely hard weeks and months. But both were necessary and worth it. She was particularly ornery about daycare, since that was 3 years ago and she was more aware. She was and looked much younger than the other clients and knew it. We eventually told her it was pre-paid so she might as well finish the month. Eventually she thought she worked or volunteered there as many did. We had to just put up with her anger and get through it. After about 5 weeks it she started to fight it less, get into the routine, stop remembering to ask a million questions and she settled in. It was an absolute godsend and the only way we kept her at home as long as we did. Also very good for her quality of life. As her abilities diminished, she still had a place where she could keep up and not be isolated and keep busy. And very affordable compared to in home options.  I imagine it would have been the same difficulty with bringing in help the home; she would have fought it hard. You have to try to keep your eye on the long distance goals, which is to have her safe. 

Good luck and let us know how it goes. 


Jo C.
Posted: Thursday, April 18, 2019 8:37 AM
Joined: 12/9/2011
Posts: 9394


This certainly is a situation fraught with challenges; I can well imagine the stress and concern this is bringing, and of course things cannot continue as they are.

Your mother appears to have "anosognosia," where she is not able to recognize she has any problem whatsoever, (you may want to Google this and read; it is not the same as denial), as you have found out, reasoning with her is an exercise in futility and causes her to resist care needs even more.

It is going to take awhile to get matters better dealt with.  Safety is the primary concern, but being blunt about anyone coming in to be with her sounds as though it will not be successful.  I ran into this with my mother; in fact, she fired the aide when she came to the door.

One of the things I finally did, was to hire a lovely woman who did companion care; I did NOT tell my mother or even my step-dad that she was hired.  How I got her to be accepted took a bit of effort, but it worked.  First; I had coffee and cake and told my mother that my friend was coming for coffee and cake and she was invited too.  I had already clued the woman in and we had our plan ready to go.  One must choose the person coming into the house very carefully to ensure a good fit.

The first day, my "friend" came in and I introduced her to Mom.  We sat down and had the goodies annd some lovely conversation with my "friend" pandering to Mom.  When she left, Mom mentioned how nice the woman was.   Five days or so later, my "friend," was coming to visit again and more treats and of course, Mom invited.  This time, the "friend" dedicated almost all of her attention to Mom; at one point I excused myself to do something in the other room, leaving them alone together for awhile before I came back.

The next day, the "friend," called Mom on the phone; she told Mom how much she enjoyed her company and engaged in conversation.  She then asked Mom if she could come and visit her again.  Mom said, "yes."

So . . . Mom had a new friend who came to "visit" quite often.  They talked, watched TV together, took walks, visited the mall and people watched; they went to lunch (I paid), and visited the hair dresser, etc.  At one point, my mother stated, "This is MY friend, not yours!"  Oh happy day! 

Another option would be to get your mother a "job."  In other words, find a very good quality Adult Daycare Program; they are not equal, so you will need to screen programs in advance to see which is best and a good fit.  THEN . . . the staff can usually provide the idea that your mother is coming to "work" as a volunteer.  They will give her small jobs to do. She may balk a bit, but chances are, she will eventually adapt and assimilate.

As for her seeing her doctor; I so hope that the doctor mentioned is a dementia speciaist. Our primary care MDs are awesome at so much, but they are not on the cutting edge of dementia dynamics and management.  This can make or break a situation.  You will want to be sure that your mother does indeed have Alzheimer's Disease rather than another dementia, such as a behavioral variant of FrontoTemporal Dementia as meds for one type can sometimes be contraindicated in another and even make things worse.  Meds will need to be assessed and adjusted as necessary.

As for the house getting to the point of needing to be sold.  This is a situation in which you really need to see a Certified Elder Law Attorney for multiple reasons and advice.   You will need to know if you have necessary paperwork such as DPOAs for Healthcare as well as DPOA for Finance; if you do not and your mother can legally sign; best to call it "Estate Planning," rather than using anything pertaining to control by another.

Since your mother wanders, and since she is at such high risk; you can ask the Elder Law Attorney about filing for Guardiaship; if her specialist determines that she is no longer competent to format her own plan of care, that too would be helpful, but the Elder Law Attorney can advisie your re the laws in your state.

This is going to take much action by you; I do not think there is a shortcut.  Your father is not able to manage this and sounds burned out, and your mother of course is gravely compromised, so you will need to take the helm for  awhile. This is a major to-do as I know from experience; but once you get all the ducks in a row, it is so much easier.

Also, the Alzheimer's Assn. has a Helpline at (800) 272-3900.  If you call, please ask to be transferred to a Care Consultant. There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.   They are very supportive, have much information and can help us with our problem solving.   It is worth making a call.

Your parents are blessed to have such a loving and caring daughter; I so hope that things begin to settle in after a bit of managing.

Do let us know how you are, we will be thinking of you and we truly do care.  Warm thoughts are being sent your way from one daughter to another,

J.


 
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