A mother load of FOG

[Riv3rW0lf]

My mother sometimes talked about her future. For her, it was either commiting suicide or moving in with one of her friends and hiring a nanny for cooking, cleaning, etc. and splitting the cost with her friend to make it possible. Maybe even two friends... She basically wanted to have her own assisted living, with nannies she was paying herself, ensuring control.

All in all, it is not a bad idea, if maybe a bit hard to put in place.

My in-laws are currently going through all of it with their parents. The grandfather has been consistently showing signs of dementia. He left, last winter, to go somewhere, and got lost. His wife didn't know where he was. The police brought him back, found him confused, walking around, not knowing where he was. He fell repeatedly in the staircase and on the concrete pavement of the driveway, one of those falls resulting in a concussion. He had to spend days in the hospital and my in-laws were hopeful they would send him to a nursing home. But the grandmother wants nothing to do with it. They tried to convince her with many solutions, and she won't have any of it.

So he is back home now, alone with her. She still drives (she really shouldn't) and refuses to go anywhere else. Like you Methuen, she refuses to give their children power and so... Just a very bad situation to be in. They continue their life. In the end : it is her decision and there is just nothing they can do.

It is hard even with no PD, so mix in a PD and it is a hard ride to be sure...

[Notwendy]

I would think that before they accept a resident, they must do an assessment of their needs- mobility, self help skills. Some retirement- assisted livings won't accept someone with nursing home level needs. Zachira- someone must have done some kind of assessment on your aunt to place her.

I have looked at several places. For assisted living, often the resident has their own space- like a room or mini apartment. It's interesting as they don't have ovens or stoves in them, but I think they have a mini fridge for snacks. There's a cafeteria and also activities and transportation to events in the community. So these residents may need assistance with meals, or transportation, or someone to come by to make sure they are taking their medicine, or some minimal help, but otherwise- they are safe to leave on their own.

The nursing home level looks more like a hospital. Residents basically have a bed and maybe a small desk. Many are not mobile. They may not be able to use the bathroom by themselves. They need assistance with dressing, bathing and so on.

I would say that physically, my mother is assisted living level, but emotionally she needs more than that. Still, she likes to be social and do things. If not for her emotional issues, I think she would have enjoyed assisted living. I actually wanted that for my parents when my father was ill. He would have gotten the care he needed. She would have been able to socialize and do things she likes to do. It all made sense from the outside but her need to be in control would have made it a miserable experience for her and the staff.

I don't think they handle difficult behavior in assisted living. As I mentioned before, I know someone who was asked to leave. He wasn't out of control but he was argumentative and possibly upset the staff. BPD mother likely would have verbally abused the staff and they won't tolerate that.

Perhaps they are better at managing difficult behavior in nursing homes. They can't very well kick someone out as they would not be able to manage anywhere else and especially if there were medical needs. One thought though, if someone really got out of hand, would they give them some sort of medicine to calm them down? I think they could justify that as the person would be a danger to themselves if they don't cooperate.

[Notwendy]

Zachira, I have heard of elderly people staying on a cruise ship. I think the cost is about the same as a nice assisted living. However, they are relatively independent. I was on a cruise a while ago and it was easy to get meals in so many ways, even room service if they wanted.

During the cruise, I  had a minor infection and had to go get antibiotics from the ship health center. It was very nice. They have a doctor on board and a small infirmary and they keep common medicines there. If a guest had something major, they'd have to air lift them to a hospital. So for an elderly person, it could be adequate for most things they may need but the person would still need to be reasonably independent.

[zachira]

Notwendy,
Yes, an assessment was done on my aunt to qualify for the nursing home. She was mobile and fully able to carry on a conversation. It is my opinion that she went to a nursing home instead of an assisted living because of her personality issues. She went from having home health care 24 hours a day to the nursing home. I don't think she had really deteriorated much and could have stayed with having home health care if all the home health care workers hadn't quit because of how badly she treated them. At one point, my aunt called a taxi company to take her to get a massage in a town about an hour away when her daughter refused to take off work and drive several hours out of her way so her mother could get a massage with this massage therapist my aunt liked. The taxi company contacted the nursing home saying they did not feel comfortable picking up a nursing home resident without consulting the nursing home first. My question is: What kind of care does an elderly person need who is mobile and has a personality disorder that would make it impossible for the staff to have her/him in assisted living?

[Notwendy]

Good question. I think my mother fits into that category. Physically, she's at the level of assisted living. Emotionally, her needs exceed that. She'd need the level of attention of the nursing home. I guess they made the right call with your aunt from reports of home health care. If your aunt was getting 24 hour care, assisted living doesn't do that. That requires nursing home care.

My BPD mother has had several home health care workers. They don't last long. They either quit or she dismisses them. I think she's on the radar of many of the agencies in her area.

I think your question is valid. It's a concern of mine as well. While I think if my mother did not have a PD, she might actually enjoy the social aspect of assisted living. But she needs more attention than that level. The only other option then is nursing home but I don't think it would match her social and mobility skills, but she needs constant attention and she'd get that there. Mostly I want her to be able to stay at home where she wants to be as she would not be happy in that situation.

[livednlearned]

Your being away triggered abandonment issues for your mother and she became more dysregulated.

I was thinking the same thing. I felt the ick rising in my throat reading those words because it's exactly what my pwBPD does.

I notice you putting your mom on speakerphone -- my (non-BPD) stepdaughter (28) does the same thing with her (BPD) sister (28), but I only now understand why.

H used to do it too when SD25 was in what seemed to be a chronic dysregulation. He would say, "I have you on speaker phone while LnL and I make dinner." It clipped her BPD wings a bit, for reasons I don't fully understand. Does your mom know she's on speakerphone?

It also seems like a way to spread the strain so that others can help validate how challenging this is.

I'm so glad you aren't alone dealing with this, even if much of the burden falls on your shoulders, especially the emotional labor that goes with the physical involved in showing up.

About the path ahead for your mom. It made me think of my BPD grandmother's paranoia as she aged. She would call my uncle (who lived close to her) relentlessly about people stealing her good lettuce and replacing it with bad lettuce. She would call and complain about the mess people were making in her house when she was in the other room even though she lived alone. She accused neighbors of coming in and moving her stuff around.

And on and on.

She wanted my uncle to call the police, to do this and that. For his own sanity, he had to stop taking her calls. He checked in by phone daily and regularly visited but took no incoming calls from her.

During that time, she started calling the police with the same allegations. After a short period following up on her calls, police did a well check and told my uncle they were no longer responding, and that she needed to be admitted. This was in another country so I'm not sure how that pipeline worked for people like her -- I only mention this because my uncle dialing back his full support was what created an opportunity for her to be admitted.

He kept supporting her but it wasn't all on his shoulders after she was admitted, and even though it was still hard, he would often say what a relief it was to share the burden. 

[zachira]

Methuen,
I apologize for hijacking your thread. My intentions were to hopefully generate some discussion of alternate solutions for the elderly who are not physically and medically impaired enough for a nursing home yet might not be candidates either for assisted living because of their disordered personalities. Challenges like you are having with your mother with BPD, are far from rare and handled or not handled in innovative ways that can make life easier for everybody. There is a grea deal of shame around mental illness and personality disorders; it seems that family members are often left in terrible limbo looking for solutions to the unbearable task of getting the best care for an elderly parent who does not cooperate in any way until the dam breaks, and more drastic measures are taken. I hope you are feeling better, and your mother's current dysregulation has calmed down somewhat now that you are back in town, or at least whatever she  is doing is not bothering you that much. 

[Methuen]

I am not sure whether this is available in your area, but some of my friends have utilized adult day care for elderly parents.

So adult daycare is available where I live.  The irony is that my mom used to take my dad to adult daycare.  He enjoyed the socialization and the activities, and the team providing the service was amazing.

My mom will never agree to this. She doesn't have a realistic picture of herself and doesn't see herself as "old". She is 100% wrapped up in optics.  Since none of her friends utilize this service (they have all aged well and are fit and able even though some of them are older than her), she would refuse it.  If any one of them went to adult day care or assisted living tomorrow, she would go to.  She has even said she would go to an assisted living facility 800 miles away where her niece 10 years younger (and fitter) is going.  She's just not willing to entertain the idea of the assisted living facility here - where everyone can visibly see she is going to assisted living first. Somehow it's a sign of weakness for her, and a loss of control. I suspect she would be demoralized and ashamed - so she just "fights" it, and refuses.  Plain and simple.  She has to be in control.  

The adult day care is a good idea though.  And I'm still glad you planted the seed of the idea for me.  Who knows how the future will unfold.

is there someone in your area who does home visits for hair and nails?   Your mom might accept that, as it would be "pampering."

Another good idea!  Mom has been having someone come to her house to do her hair for about 2 years now.  But she's too cheap to have them come once a week.  She would never have her nails done.  But she does have someone also do her toenails occasionally (possibly the same person who does her hair).  I'm at the point where I don't ask too many questions.

Zachira: to your point about assisted living vs long term care, while my mom is probably still at the assisted living stage, that window will close one day, so if she continues on her current path, she may be at risk of one day going straight to long term care.  

As for thinking about our own futures as we age, I don't think anyone wants to go to assisted living.  Not now as we mull our futures, and especially not when the time presents itself in our face. H and I have talked about this too.  But, we are not "afraid" of it the way my mom is, because we have toured assisted living facilities.  There are all kinds of opportunities there, that are not present when one lives alone.  Tons of stimulation, programs, and social opportunities.  Where we live, assisted living is much like an "apartment", and includes a full kitchen (albeit small) including stove, fridge, and microwave.  Assisted living also comes with a 24/7 nurse on duty. H and I would rather do assisted living as a gift to our adult children, than put them through the "H _ _ _ _" mother is putting us through.  I hope that as I age, I have the grace to see it through, and that dementia does not take that grace away from me.

I am not suggesting that we put Methuen's mother on a cruise ship.

I love this! This is the best idea yet!   (except mom gets nausea on dry land never mind on a ship. She hates anything that floats).  Thank you Zachira.  This put a smile on my face.    Your point about thinking out of the box is appreciated.

My mother sometimes talked about her future. For her, it was either commiting suicide or moving in with one of her friends and hiring a nanny for cooking, cleaning, etc. and splitting the cost with her friend to make it possible.

I can relate to her talk about suicide.  With my mom, she has always used the expression "I will commit suicide before I move into assisted living".  Even when no one is talking about assisted living, she will express this thought, just in case anyone wasn't already aware.

Notwendy,
Yes, an assessment was done on my aunt to qualify for the nursing home. She was mobile and fully able to carry on a conversation. It is my opinion that she went to a nursing home instead of an assisted living because of her personality issues... My question is: What kind of care does an elderly person need who is mobile and has a personality disorder that would make it impossible for the staff to have her/him in assisted living?

An icky thought entered my head that maybe mom's February assessment deemed her "not needing assisted living" because she would be so difficult.  I'm just going to kick that thought away, because hopefully no professional would do that.

Does your mom know she's on speakerphone?

It also seems like a way to spread the strain so that others can help validate how challenging this is.

I'm so glad you aren't alone dealing with this, even if much of the burden falls on your shoulders, especially the emotional labor that goes with the physical involved in showing up.

About the path ahead for your mom. It made me think of my BPD grandmother's paranoia as she aged. She would call my uncle (who lived close to her) relentlessly about people stealing her good lettuce and replacing it with bad lettuce. She would call and complain about the mess people were making in her house when she was in the other room even though she lived alone. She accused neighbors of coming in and moving her stuff around.

Thanks LNL.  Thankfully my mom has not reached that stage of paranoia.  Although - last week a male nurse was sent to do her bedtime eye drops and safety check.  He was of African descent, and she freaked.  She became verbally agressive, thought he was going to rape her, and took the key out of her lockbox.  Then every morning, she waited by the door at the appointed hour, so that when home care came, she could let them in.  She probably knew that it could end badly for her if they came to do her drops, and couldn't enter the house.  After they reassigned him elsewhere (he was truly caring and wonderful) she put the key back in the lockbox.  She claims she did it herself.  If that is true (and she didn't get a flying monkey to do it for her), she is capable of doing more than she has shown us she can do.

Yes my mom knows she is on speakerphone. There have been a couple of exceptions: I recorded two of her rages, which she was unaware of.  Only H and my T have heard one of these rages.  For my sanity, the objective evidence is helpful, in the event I ever start to think "it's not that bad" or, "I should be a better daughter for my mom".  Just having it helps.  I haven't actually listened to it again.  It's also insurance should any health care professional suggest I am the problem because of what my mother tells them (if she's dysregulating).

Methuen, I apologize for hijacking your thread.

Oh dearest Zachira! That is the sound of your dysfunctional family members making you feel like you have something to apologize for.  Please don't apologize!  Goodness knows, this site needs to be a safe place to express our ideas.  Your ideas/questions aren't hurting anyone - so please keep on expressing!  You have helped and supported people on here for years.  We can all learn from your ideas and questions.

I have little doubt my mother's recent behaviors were probably related to our being absent because of travel, and her being "alone" with her feelings of abandonment being triggered again.  We are leaving again this Thursday for 5 days, but I'm not telling her until tomorrow or Tuesday, so she doesn't have as much time for her anxiety to get out of control.  No point telling her weeks in advance.

I am observing a change.  It used to be that my moods and mental well-being paralleled my mother's.  If she was depressed, or angry or raging, or being emotionally needy beyond even her  normal, then my mental health also struggled.

Now that I am learning to live my life, and have boundaries, I am finding some pleasure and joy again, even amongst the troubles going on.  Even as my mom makes terrible decisions and languishes in her home, we are planning our next camping trip, our daughter has returned to her hometown and is living with us (+ her partner) until their rental is ready, and
I am working .6FTE.  It is a work in progress to move on with my life, and slowly release the FOG.  Some days it is two steps forwards followed by a step back.  Other days it is two steps backwards followed by steps forward. It is a work in progress. 

Thank you all for your continued support and consistent encouragement.  This forum provides stability (BPD family) where we have not had stable family.  The reliability of such good people here is amazing.

[Notwendy]

Zachira- you made an important point. Elder care resources are limited and so are mental health resources.

I have looked into them, first beginning with my parents. I think it's still expected for children to assist elderly parents, but it's getting harder to do this in our more mobile society. My mother in law cared for her mother in law and expected her children to do the same for her. By the time she needed care, most family members didn't live close enough to provide daily care except for one who was single and had a full time job. That child tried to help but got burned out trying to do it all. Getting MIL to accept help from anyone outside the family was tough, not because she was difficult but because her generation and culture considered it an insult. Her grown children were willing to pitch in financially to get her help- but getting her to accept it was the barrier.

Cost is a huge consideration. Medicare doesn't cover assisted living or nursing home care. Medicaid will assist with the cost only when all resources are depleted and only for nursing home care. In addition, beds are limited and so, if someone is needing Medicaid, their choices are limited to what is available. Medicaid allows for something like $36 a month only for personal expenses. Other than that, the person can not have additional income.

Assisted living where someone is relatively independent is costly and so one needs to be able to pay for it. There are different ways to do this. Some are monthly rent. Others are buy in in a continuing care arrangement. The person buys a unit and then has a monthly fee for food and other services. If that person needs nursing home care, the equity in the home is used to cover that, until Medicaid steps in as needed. A requirement to get into assisted living/independent living is that the person needs to be able to live safely at that level and they do an assessment first. So there is a "window" in the aging process where one can do this.

As Methuen says- it's not that anyone wants to go to assisted living but some of them are nice with amenities like a pool, or gym, and social events. It is preferable to go this route first because then, if someone needs nursing home care, they may actually have more choice than if they waited to when there is a urgent need. The entry point to assisted living is voluntary. For nursing home, it's often after the person is in a hospital for an illness and is not able to return to their home and so has to go where there is an available space.

Cost is a consideration. If a person owns their home- the way to cover the cost is to sell their current home and use the funds to either buy into a continuing care community or pay the monthly fee. This was what I first imagined for my parents and also my mother- that the value of her home in addition to her monthly income from Dad's savings, and social security would give her some nice choices. This is one reason why I was concerned when I found out she'd taken a home equity loan on her house because I wondered if it would limit her choices if she had the need for them.

Another option is care at home which is very expensive and not covered by Medicare or Medicaid. This is why nursing home care becomes a necessary decision and that itself is costly. My BPD mother has chosen this option- all others are unacceptable to her and actually assisted living would not accept her with her behaviors or they'd dismiss her shortly after once they experienced them. Ironically, had she agreed to go earlier, these behaviors would not have already been witnessed by the home health staff, so maybe it is for the better that they now know what her needs are. I think much of her financial resources have been spent on this, but it may be that this is the best possible arrangement for her.

MIL also stayed in her own home for as long as she could, but her own frugality and common sense eventually led to her agreeing to nursing home care when she needed it. At that point, her health actually improved. If left to herself, she would not bother to fix herself a meal, or be able to change her clothes but she got meals at the nursing home which was close enough to family and friends to visit. They could still come to take her to out for a meal if she was up to it.

I have friends who moved a parent into their own homes. It surely was an adjustment but also a blessing in ways. But there came a point where it wasn't safe for the parent. One friend would get calls from the neighbors who spotted the parent ( with dementia ) getting lost in the neighborhood as he was able to get out of the house when people were asleep or not looking. Or the risk of a fall was too high. Eventually they faced the difficult decision of nursing home care for safety reasons.

[zachira]

It seems that whether our disordered parent has home health care, goes to an assisted living or a nursing home, that it is crucial to find out if the agency taking care of our disordered parent has people employed who have the skills and support to do so. I think my aunt's home health care workers did not know how to work with somebody like her, so it made them more likely to quit. It seems that the nursing home staff did not do much better with her and really disliked the extra burden she was to the staff. In the case of my mother with BPD, she was very hostile to the home health care workers, until she finally got to a point where she was more appreciative of how wonderful they were to her. When my brother was dying of cancer and living in mom's house, one of the home health care nurses went all out to stop some of the ways my mother was abusing my brother, and he got some badly needed care to reduce his suffering because of her interventions.

[GaGrl]

A childhood friend of mine developed and opened a memory care home last year -- it is for women only and can handle a spectrum from milder dementia to full-scale Alzheimer's. I would think any nurses and attendants in such a situation can deal with high levels of anger and verbal, even physical, outbursts.

I don't know how common these types of homes are, but I have to wonder if someone with a PD who could be qualified with dementia would be best suited to one.

[Notwendy]

Zachira- You have pointed out another gap in elder care. The home health workers do not have professional training. They are there to help an elderly person stay in their home by doing things like preparing meals, assisting with personal care, and providing assistance with household tasks- laundry, errands, and transportation if they are hired to drive.

Here's the issue- someone with BPD may need the level of supervision that someone with memory issues might have, but they don't qualify for it and also may resist it. My BPD mother has helpers who have worked with dementia patients, but if they treat her like that, she gets angry because she doesn't need that, but she still needs that level of supervision emotionally.

It's similar to the line between legally competent and incompetent the issue of personal freedom. Maybe my mother needs have constant supervision, but one can not restrict personal freedom without reason. For now she's still in charge, even if she doesn't make the best decisions, unless it becomes harmful to her or someone else.

You have to consider that, if even trained therapist struggle with managing BPD, home health workers are not able to manage it.

The difference between someone with a PD and dementia is that, the person with the PD chooses their behaviors. The person with dementia who wanders out on the streets can be confined to a room when not supervised,  just like one would put a toddler in a playpen to keep them from hurting themselves if the parent needs to be fixing dinner. Neither should either stay confined like that for a long time without interaction. But you can not legally lock up a person with BPD who can walk around without harm to themselves.

I really don't know how they'd handle an uncooperative person in a nursing home. My mother did mention after an ER visit that the "mean nurse pushed her onto the bed". The story I imagined is that she probably tried to get off the bed without assistance and they didn't want her to fall, so gently pushed her back on the bed to stop her from falling. She didn't see it that way though.

[zachira]

There was a study done years ago on the accuracy of psychiatric diagnosis, comparing the professionals with training in mental health and the residents of a mental health facility. The residents were just as good as the professionals in describing all the aberrant behaviors, the only difference being the mental health professionals knew the names of the diagnosis.
From my experiences, many people who work with the elderly know how to deal with difficult elderly including those with personality disorders, and many of them have training in doing so.The key is find employees/employers who get it and can work with difficult seniors. Just because someone has training in working with mental health disorders doesn't mean he/she is effective in working with difficult seniors.
I have been touched many times by the kindness, generosity, and effectiveness of many people who worked with my disordered elderly family members, some who were trained mental health professionals and most who were not, though likely had some kind of orientation and support from their employer on how to work with the most difficult elderly clients.
For those of us who have a disordered elderly parent who would be a challenge for any agency/institution to provide care for, it seems that the focus needs to be on finding the right fit so that the family will not be abandonned to deal with the elderly parent on their own.

[Notwendy]

I don't really know the skills of the people who are helping my mother. She's not happy with many of them- but that's with most people. Many don't last long with her- I don't know if it's her behavior or she decides she doesn't like them. She seems to like the person she has now. This person is trained in elder care issues like dementia, ( and maybe PD's as well but they would not tell her that specifically) so maybe that is why they sent her.

[zachira]

I learned that I have to believe there are people out there who can help with the most difficult of challenges otherwise I will unlikely get the help I need.