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Need Guidance on how to best transition a very resistant parent to full time at-home companion care or Memory Care
KM1986
Posted: Saturday, February 9, 2019 2:28 PM
Joined: 12/9/2012
Posts: 5


Mom has moderate stage Alzheimer's and just recently began to wander. We are weighting the options regarding either 1) having her come to live with me with a care companion helping out; 2) staying in her home with a caregiver who comes in daily or lives in; or 3) placing her in a Memory Care Facility. Mom denies having Alzheimer's and refuses to consider any of these options because "she still has plenty of sense and can handle her own business." I have Medical POA and her doctor has written a letter saying she no longer has the capacity to make reasonable decision regarding her care. My question is how do you get a parent through the transition from living independently to having full-time care? She becomes very combative and angry when these things come up. Do you just make the decision and go ahead with it? Do you continue to try to make her understand? I would appreciate any guidance you might have.
TessC
Posted: Saturday, February 9, 2019 4:28 PM
Joined: 4/1/2014
Posts: 4595


I can't say how BEST to transition your mother because I don't know what will work for her, but it helps to let them take small steps and then take more small steps until you get your mother in the situation that keeps her safest. For now how about saying you have a friend who needs a job and could the lady do things for your mother like fix meals, drive her to the store and clean the bathrooms, etc. In actuality the lady could be keeping an eye on your mother during her most difficult times-like mid afternoon or whenever she is most likely to wander.

Another tactic that works sometimes is to bring the parent to your home "for a short visit" which then lengthens as needed. "Oh, lets go back next week." "Oh, I can't take you home today, let's go back next week."

Once I got my mother to come stay with me, she forgot about her own home. In fact, we sold it to her grandson and when we went to visit him and her old house-she did not recognize it and was ready to go back "home" after a few hours there. Her "home" was where her cat was, and he was at my house.

Good luck!

 


MacyRose
Posted: Saturday, February 9, 2019 5:17 PM
Joined: 12/15/2011
Posts: 3779


We just made the decision and went through with it.  If she is wandering, she is not safe and part time at home care is inadequate for her needs and she could be far worse off next year.  At home care costs around 3 times as much as facility care.  It can become a real financial trap.  Having done it both ways  - at home for mom because dad wouldn't let me place her, facility now for dad, I prefer facility.  Works better, cheaper, allows you to be the relative and not full time caregiver, don't have emergencies like caregiver can't get to work due to weather, don't have to worry about electrical, plumbing, heating, ac, etc issues.  At home care was a zoo and way too expensive.  Care facility is nice, better care level since the CNA's are managed and you don't wind up constantly having your life interrupted by one emergency after another 24x7.  Move mom.  Don't discuss it with her in advance, just do it.  There are senior moving companies that can help make it a turnkey move.  Tell her she is just there for a visit and promise to take her home in a few weeks - after her house is repaired from the "water leak" or whatever story you make up.  And repeat.
pidgeon92
Posted: Saturday, February 9, 2019 6:10 PM
Joined: 10/25/2018
Posts: 115


I made the decision, and I moved him there. I did tell him about it two days prior to moving him. I explained to him that it was the best way I knew how to care for him. = Really, there wasn't any other choice. He could not stay in the house by himself. 24/7 caregivers would have put him in the poorhouse in a few years. He was not going to live with me in my house, that simply wasn't an option, and I'm not living with him in his. I don't have a patient, caregiving personality, it wouldn't have been good for either of us.

I did the research, and I found a beautiful facility near my home. Was he happy there? No. Was he happy at home? No. But he was as well-cared for in the facility as I could have hoped for.  It is so hard to reach these people once they get that far along in their dementia. 

 


Mimi S.
Posted: Saturday, February 9, 2019 7:46 PM
Joined: 11/29/2011
Posts: 6863


Welcome to our world KM.  I'm so glad you fud our site.

i think cost wise, full time care at home is about comparable to memory Cre, but a lot drepends on location.
If she wanders, she cannot be home alone.From my perspective there are advantages to Memory Care. Choose wisely and you will have well trained staff. There should be physical and cognitive activities for them. Socialization is achieved with community meal and activity times. You can visit her but the responsibility of 24/7 care is off your shoulders.
I would not discuss the move ahead of time. When the time comes, use some fiblet such as we found bed bugs; the hot water heater broke; whatever and move her there. Can someone move her things there while you take her to lunch or a long drive, whatever.

 

Do your best to make a quick pop in visit the next morning. You want her to know she has not been dumped.
MN Chickadee
Posted: Sunday, February 10, 2019 8:35 AM
Joined: 9/7/2014
Posts: 664


Google ansognosia. This means a person with cognitive impairment isn't in denial, their brain is just compromised to the point it can't recognize it's deficits. It's very common with dementia. 

Keep in mind even living with you  or with help that comes in, she needs 24/7/356 supervision now. No running out to run an errand. You will need to coordinate shifts for 24 hours a day. My mom used to get up during the night and wander around the house and my dad didn't always hear her. So someone needs to be prepared to on guard, ready to wake during the night. If she moves in with you, prepare for not sleeping as much and needing to arrange a caregiver for every moment you aren't there. Too much can go wrong, it just takes a second. At the point where she is wandering there may be other safety issues that are on the horizon or even here and you don't realize it, such as in the kitchen. Things that often cause someone to need to move a PWD to a facility is wandering, night waking, and incontinence all of which are likely coming for your LO. 

As far as tactics, you can't reason with her or lay out logical facts to convince her. That ship is saild, her brain can no longer process this. You will likely need to use fibs and finesse the situation. 

If you bring help in, say it's just a cleaning lady "as  a gift so you don't have to worry about that" or your friend who has found hard times and you are paying her to help the family to get her on her feet. If you move her, either to your house or a facility, go there from an outing and say there is something wrong with her house. A pipe broke and it will take some time to fix so you have a room set up at this great "senior hotel." They will take great care of you and they have lots to do.  The furnace went out but you can stay with me and  I get to spend more time with you this week, won't that be fun? We can pamper ourselves.  Whatever will fly. Redirect the conversation. Never say it's permanent, just that you validate her feelings about wanting to go home and maybe she can soon. Maybe next week. And repeat. And repeat. 

Many PWD in the middle or later stages refuse to move or have help and we have to just find a way to force it on them with as little anxiety and discomfort for them as possible. it can be very unpleasant and difficult but we do what we have to in order to keep them safe. For my mom, we got her room at the memory care facility mostly set up ahead of time. Then my dad took her for an outing, I got the last of the things she needed out of the house, and finished her room. He brought her there and spent some time with her and said the doctor wanted her to be here for a little while, then at some point excused himself and left. He left notes saying the doctor wanted her to stay there for observation for a few days and he would see her soon and those notes really helped.  It feels so awful and wrong but there were few options for someone resistant to it. You plan ahead with the staff, they should be able to help and give extra TLC the first day and week. When we got her adjusted to an adult daycare years before that  it was a similar strategy and challenge. You go with the flow, try not to freak out, and do your best. 

 


harshedbuzz
Posted: Sunday, February 10, 2019 9:50 AM
Joined: 3/6/2017
Posts: 1195


At the end of the day there is no one-size-fits-all that makes this decision easy. 

Money may factor in. 24/7 care from an agency-based group of care-givers is expensive. Here, you're looking at $30/hr for dementia care with upcharges for holidays and nights at most agencies. If you cobbled together your own team from care.com, you'd still be paying about $18/hour and have the onus of background checks, liability insurance and tax withholding and dealing with no-shows.

If you move her in with you, and you still work, it would be cheaper but you would still have to cover any time you aren't there. I have a friend doing this; her life became basically 1 shift of paid employment and 2 unpaid arduous shifts when she returned home from work. Her mom's up a lot at night, so sleep became an issue. She's currently doing FMLA but is considering stepping down from her job. I know some people who arrange a day program as respite but that can be a daily battle for someone with anosogonosia.

When we brought HHAs into the house, I claimed they worked for me and were required by mom's surgeon around her knee replacement. It took a while to find a good fit; it seems like agencies send the duds first. We had one who made off with mom's jewelry- she left someone else's checkbook with signed blank checks at mom's house.

Making the transition to MC was easier that I expected. We created a story about the doctor wanting dad to have some intensive rehab at the fancy private rehab center. This appealed to dad's self-focused nature and snobbism. When he asked about leaving, we told him it was up to the doctor.  I set the bedroom suite up ahead of time to look like a concierge-level hospital room- new linens and some large photographs of his favorite golf courses that had previously hung in his den. He thought they were nice but didn't recognize them as his own. 

Because he moved from a home he shared with my mother, blaming the move on a leak or insect infestation wouldn't have made sense.
jfkoc
Posted: Sunday, February 10, 2019 10:40 AM
Joined: 12/4/2011
Posts: 16189


Trying to reason is 99% unsuccessful. Trying to convince someone that they can no longer take care of themselves is futile. Taking away independence leads to anger and taking away dignity leads to depression.

In my case having someone come in part time because they had been laid off worked well. It made my husband the helper.

 


BAECB
Posted: Sunday, February 10, 2019 10:55 AM
Joined: 1/31/2019
Posts: 1


My sister and I tried 24/7 in-home health care for our dad when our mom suddenly passed away - she had been resistant to getting health care for him for over a year, always noting that she could take great care of him herself even though he no longer recognizes anyone in his immediate family.  The in-home health agency was great, but dad was completely resistant to having strangers in the house.  He began hiding things in the house within a few days and made us nervous that he might think someone had broken into his house at night - we did not want harm to come to them.  He is a retired police officer that has grown very paranoid about break-ins.  We made the difficult decision to move him to a memory care center.  We did not tell him he was moving - we replicated his home bedroom and bathroom ahead of time, drove him to the memory care center and advised him that the doctor needed him to stay there for awhile so that they could see why his head hurts.  He often says his head hurts and he thinks he is going crazy, so the discussion seemed to help.  The first few days were very hard - he was scared and cried every time we talked to him.  He has settled in over the course of the last two weeks and seems to be in a good mood each time we see or call him.  He says the memory care center is keeping him really busy and they need his help a lot.  The center recognizes that he likes to fix things, so they have been inventing things for him to repair.  They also insure that he takes long walks outside every day in their gardens.  And that he gets his ice cream every night!  The guilt of feeling like we abandoned our dad is slowly wearing off as he settles in.  We know that he is in a safe place that he won't be able to wander away from.
GMcG
Posted: Sunday, February 10, 2019 12:20 PM
Joined: 7/4/2013
Posts: 288


My advice is to identify a most likely course of the disease and formulate question addressing that scenario.    Incontinence, hand feeding, pureed foods, mobility issues.  Also any care required for other health issues.  
At one point we had my Mom and my MIL in the same AL/MCF a short distance from our house.   My Mom moved into the AL after my MIL had been moved from the AL to the MC wing.   Eventually they were both in MC wing.   My mother reached a point, probably because of a mild stroke,  that she required assistance eating and was a 2 person transfer.   The MCF she was in had a corporate policy against hand feeding and would provide soft but not pureed foods. They would not do a 2 person transfer.   We were asked to move her.  After a lengthy stay and rehab in  a SNF she was able to feed herself regular foods and needed only minimal assistance with transfers.    By this time she was mostly incontinent.   She was alert enough to ask when she was getting out of the hospital so I decided to move her back to a MCF.   I asked at each I visited how they handled feeding and the requirement for pureed food.   Did they use hoyer's lifts or 2 person transfers?    I found a facility after 30 minutes from my house that could handle her future needs as well as her current needs.   By the time she passed away about 2.5 years after moving in,  she required hand feeding of pureed foods and a hoyer lift.    My MIL never required hand feeding and remained able to assist with her transfers so stayed in the original facility until her death.


KM1986
Posted: Sunday, February 10, 2019 8:24 PM
Joined: 12/9/2012
Posts: 5


Thank you all so much!  This truly helps.  Mom has an appointment with a geriatric psychiatrist at Baylor Memory Care this week. I am hopeful that we will have a better and more complete assessment of her needs following this visit.  I truly appreciate all of you for answering and supporting me during this time.
Momma S
Posted: Sunday, February 10, 2019 9:12 PM
Joined: 4/26/2018
Posts: 35


I'm 58.  Last kid is a freshmen in college.  I'm an only child.  My mom passed almost a year ago.  Dad has ALZ.   I'm also self-employed.

I kept Dad at home for 7 months after Momma died.  I lived with him 16 of 24 hours a day for 7 months (he was never happy and would not come live with me).   CNAs $25 per hour during the day (Some challenging times with their work schedules).  Dad started falling frequently, so I had no choice but to place him.  Memory Care $5500 per month (he's still not happy, but he's basically content and I can sleep at night).  24/7 care at his home $15,000/month (he would not be happy and would gripe about the caregivers during all of his waking hours).  It was not an easy decision/move, but he's where he needs to be and I'm only 15 minutes away.   

Add/Edit:  Love my Dad.  I miss my Dad.  I can be a better advocate now.  When I was working to keep him at home, he was agitated and I was exhausted. I feel blessed that he is in a place where he's a bit happy (most days) and I know he's getting adequate care.

 


Cam214
Posted: Sunday, February 10, 2019 10:18 PM
Joined: 1/28/2019
Posts: 18


We just did this with my mom.  The lovely people who helped us basically said to just say we were going out to lunch or coffee or something like that.  In our case, a social worker mom had been already working with pretty much convinced her that she was going to give my sister & I a break since we've been on her couch doing the 24/7 thing for two months and were exhausted.  My mom wouldn't do it for herself, but she'll do it for us.  She still wasn't happy but she went.  When she had a very lucid couple of hours, we had a long talk with our real mom and she could see how we were concerned.  So while she was reluctant, and still sort of is reluctant, we got her there.  We basically told her that we didn't know why she was doing the things she was doing and we wanted her to go to this rehab type facility where they could get her some better care than my sister & I could provide and get her back on her feet so she could come home and be independent.  Yes, we know that will never happen, but she doesn't.  She can't accept the diagnosis so we don't talk about it.  We talk about how she's having trouble remembering things and we're concerned about some of her behavior (like hearing music no one else does and unplugging a lamp and saying it's still playing) - and in that one clear couple of hours where she was mom again, she understood and was okay.  Day three, she's okay.  My brothers aren't but they don't get a vote.  But she's okay.  We're hoping she'll transition from respite care (which is what we sold her on) to long term care.  So try that, respite care.  Just a couple of days to a couple of weeks, whatever is palatable.  Then it's "just a few more days until you're back on your feet"...
i2i
Posted: Monday, February 11, 2019 6:01 AM
Joined: 8/12/2017
Posts: 144


Sending you a lot of sympatico, KM.  This is a very stressful transitional period, in my experience it was the hardest - their reasoning is gone, but they are still actively up and about,  able to argue their case as it were, and to put themselves seriously in harm's way.  In-home options have worked for other people, but my thoughts...

  • Having my LO stay with me did not work.  My PWD still wandered, dangerously, and there were other safety issues.  It happened even with a spouse at home full time, plus spouse is disabled and it was stressful for him.
  • Staying in his home with (attempts at) caregivers only fanned the fires of his confusion ("what the h3ll do I need someone coming to my home for?") regardless of the fiblets, and his paranoia.
  • Yes, you bite down and make it happen however you can best maneuver it.  You do not try to convince them of the need.  That boat has sailed.
  • +1 to jfkoc, you still do this in a way that promotes autonomy and dignity as much as possible.
  • Many here have given excellent advice about the how of making it happen.  Is there a small part of you wrestling with the why, wondering if it is time yet to transition her?  Once I resolved that last remaining piece, it became easier to move forward.
  • This is a tricky stage in the illness.  If your mom has lost her insight and judgment, but is still active and combative, a geri psych hospitalization might need to happen.  If it does, do not take it as a sign of failure or being cruel to your mom.
Good luck!


TSC68
Posted: Monday, February 11, 2019 11:31 AM
Joined: 6/8/2017
Posts: 2


You are not alone! Went through this with my father over a year ago and it was the hardest thing I’ve ever done. He was becoming really paranoid and was constantly agitated. He’s a retired military officer and had worked in the prison system and he had guns in the house. He was also the victim of financial abuse and leaving him at home meant the return of his “  companion”. Eventually adult protective services opened a case. Because he absolutely refused to give me PoA, I wasn’t able to do anything on his behalf initially. Even if I’d convinced him to move to a care facility, he was within his rights to leave it at any time. I ultimately had to file for guardianship.   My father refused to let caretakers into his home, or pay for that service,  so that was just not an option. There  was no other choice but to have a judge sign a court order to have him picked up and evaluated by the state. I was then able to get him placed in a memory care facility. I felt so guilty and terrible at the way in which I had to go about it all as it was literally with him kicking and screaming, I’m not sure if you mentioned having a PoA, but if not that would be my first step before you do anything else. As uour mother’s condition deteriorates it will be more and more difficult to find someone to notarize the document. You will be unable to do anything for her without it. 

I agree with others that keeping her in her home may not be the best option, even with the help of an agency, especially since she’s resistant. It will still require a lot of oversight by you and is really expensive. The one I tried to enlist charged for a visit even if my dad refused to let them in.  Hopefully the gentler tactics mentioned work in your situation. It’s hard no matter what and, as previously mentioned, every scenario is. different. My dad came in at an earlier stage of the illness and absolutely hated the facility he eventually was placed in. He’s still not happy and I struggle with the guilt. I just have to remind myself that I’m not in control of this illness and I can only do what I can do. At least I know he’s safe and getting the medication he needs. With the guardianship I was able to move my father into a facility close to my home and I visit him nearly every day. It’s not perfect but I’m able to step away from it a little bit  and be a better caretaker as a result. I really hope you have a better experience and that the transition goes smoothly for you whatever you do! 


KM1986
Posted: Monday, February 18, 2019 9:39 AM
Joined: 12/9/2012
Posts: 5


Thank you all so much!  Mom saw a geriatric psychiatrist who has prescribed Lexapro and Donepezel. 


The doctor told her that she needs someone to come in everyday to make sure she is taking her meds and eating,etc. Mom said “when I get to that point where I need help, I’ll hire someone.” The doctor said “Miss Martha, you ARE at that point.” Then the doctor said, “as your doctor, I am telling you that I am ordering this for you. Also, you have trusted your children to make decisions in this regard (then doc told Mom how smart she is to have prepared for this by having a POA) and that there are going to be decisions made based on that trust in order to keep her safe. She wrote out a “prescription” for a home caregiver.  Then the doctor looked at me and said to go ahead and find someone and then just do it. She said, “I’m officially relieving you of any guilt or hurt you may feel about that because you are doing what is best for your Mom.” So far so good.
 
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