RSS Feed Print
If you dealt with the disease alone how did you cope?
Unknown By Man
Posted: Monday, December 27, 2021 4:56 AM
Joined: 12/23/2021
Posts: 97


Hi, my mother is not under 65, but see is still young imo 70. I was just wondering if others younger went through family and friends abounding and leaving you to you own devices due to not wanting to deal with the issues of the disease?

I am currently in the position of being my mothers sole caregiver and it is killing me. So I wondering, if given the option how would you feel about being placed in a state funded home? If constant home care was not a viable situation due to personal behaviors. Would you rather stay in your home and let whatever happens, happens? Would you be okay if someone else took control of everything and took all choice away from you even if it was just the illusion of choice?

If you had a child would you hate them for forcing you to spend your twilight years alone in and uncaring and unloving environment for their own convenience? 

Today I tried to example to my mom what will be happening in the next year, and she asked me why did I hate her so much, why can she not live with me, why do I want to also abandon her. It is not what I want, but I do want my life back I want to be able to do what I want when I want.

I wanted to post this hear cause I would love to hear from those that suffer from the disease and not just from caregivers, 

Also how would you feel, would you rather someone be honest about the disease and progressio or would you rather someone lie and feed false hope like my moms doctors want me to do. I believe honesty is the best policy but I have been told this is wrong so I was also wondering. 

Being as I cannot have this conversation with my mom cause it always comes down to me being a horrible child for not taking care of her and doing what is best for her general well-being verse my own. 

I just want to know the truth you can be blunt and as honest as humanly possible no need to hold back. I have ask caregivers what I should do, and have told them my story but I have not done much to reach out to those who are directly impacted the choices caregivers make which is unfair in my opinion and why I try to keep my mom in the loop as much as possible, your choice matters. 

What type of compromises would you find appealing. My mom’s issues stem from the fact she is not a self starter and hates to be alone. Though she handles everything else more or less on her own but does act up if she is left alone.


Michael Ellenbogen
Posted: Monday, December 27, 2021 7:06 AM
Joined: 11/30/2011
Posts: 4244


The questions you ask are very hard to be answered as we are all very different and we may have all different expectations. It also matters to know many other factors before I could ever give an honest answer.

I prefer the truth but for some that may not work. Again, that dependents on what its all about. If you lied to me It may be held against you for a very long time. Anyway I would never want my daughter to feel like she could no longer handle it, because of me.  But it is not that easy to answer. 


Iris L.
Posted: Tuesday, December 28, 2021 12:54 AM
Joined: 12/15/2011
Posts: 17899


Unknown By Man wrote:

Hi, my mother is not under 65, but see is still young imo 70. I was just wondering if others younger went through family and friends abounding and leaving you to you own devices due to not wanting to deal with the issues of the disease?

 

Welcome Unknown.  I will attempt to answer your questions but bear with me, because there probably will be some jumping around.   First if all, I do not have Alzheimer's Disease.  I have systemic lupus plus a myriad of other diseases and conditions that result in memory loss and cognitive impairment.  For years my neurologist followed me but determined that I do not have AD.  My dx is cognitive impairment not otherwise specified. I have been a member on these boards since 2009 and I am now 71 years of age.  I am not married, have no children and have one brother still working on the other side of the country.  I have no nieces or nephews or close family members.


My close friends, whom I had supported during very difficult times in their own lives, all abandoned me when the subject of possible memory loss was coming up.  I never mentioned the word "Alzheimer's" to my close friends, nor did I ask any of them for help.  But they ran for the hill's anyway.  Yes, I was left to my own devices.


Fortunately, I was able to join this board and learn from the members what to do for myself.  I learned from both the patient members and the caregiver members.  At that time the Care Consultants had a section, and I received wonderful, professional advice.  I fell into a deep depression when my friends abandoned me.  Fortunately with the guidance and support of the members, I was able to come through.


To begin, nobody wants to deal with the issues of the dementias!  It's not a failing to admit that!  Dementia is rough!  


What I have realized, which I believe is crucial, is that we have to develop a philosophy about dealing with dementia and about life in general.  As in poker I believe we have to play with the hand we have been dealt.  Fortunately we may be able to get some new cards.  We do this by educating ourselves about what we are up against and figuring out our options.  There are many options.

 

I am currently in the position of being my mothers sole caregiver and it is killing me. 

 

Caregiving is hard.  You are not the only one who finds it hard.  Some people find solace in knowing this.

 

So I wondering, if given the option how would you feel about being placed in a state funded home? 

 

Personally, for me, I was looking forward to it.  But I will not be in a state funded home.  I am arranging my finances so that I can receive excellent private care, first in my own home, then in a well run facility.  I was looking forward until I learned of the poor decisions made for residents due to the pandemic, exposing them needlessly in many cases to Covid patients discharged directly from hospitals.  


Placement is not abandonment.  Placement is a choice of where the best care can be met.  Ideally the PWD and the family or solo caregiver child could make that decision together.  


The obstacles are these.  Most PWDs (about 70%) have anosognosia and are unaware of having dementia or what it means.  Also, not only PWDs, but just about everyone you will run into is unaware of the toll caregiving places on the caregiver, especially the solo caregiver.  

 

If constant home care was not a viable situation due to personal behaviors. 

 

"Personal behaviors" need to be addressed and resolved beforehand.  No facility will accept a PWD with disruptive behaviors.  On the other hand, some behaviors, such as not bathing or incontinence, are part of the dementia illness and a qualified facility will have experienced caregiver and administrative staff to handle these.  The members have many threads about choosing a good facility also on dealing with disruptive behaviors.  Medical advice from a geriatric psychiatrist or geriatrician can be needed.  Also learn from Teepa Snow and Naomi Feil.

Would you rather stay in your home and let whatever happens, happens? 

 

Letting whatever happen, happen, is not a viable solution, IMO.  Dementia is a progressive illness leading to death.  PWDs lose the ability to comprehend safety and quickly get themselves into trouble.  It is not acceptable for a person to be allowed to live in an unsafe situation or environment.  

 

Would you be okay if someone else took control of everything and took all choice away from you even if it was just the illusion of choice?

 

This will happen either way, at some point.  The PWD may have the opportunity to appoint a trusted person to handle her affairs and care for her according to well thought out and planned wishes.  Or the court system will appoint a public guardian who will do the same thing.


Regarding illusion of choice:  you must get the understanding that, at some point in time, your mom will not be able to make reliable decisions, due to the decay of complex brain function.  It will be useless to keep asking her input about serious matters.  It will be painful, but love for your parent means making these hard decisions.  You are not doing something TO her, you are doing things FOR her.



If you had a child would you hate them for forcing you to spend your twilight years alone in and uncaring and unloving environment for their own convenience? 

 

Choose a good facility!  A good facility will allow you to return to being a loving son or daughter who visits.  You cannot be a 24/7 caregiver on your own.  I would not hate my child for choosing the best care for me.

 

 

Today I tried to example to my mom what will be happening in the next year, and she asked me why did I hate her so much, why can she not live with me, why do I want to also abandon her. It is not what I want, but I do want my life back I want to be able to do what I want when I want.

 

Do not keep explaining.  She does not seem to be able to comprehend.  Especially, do not say, "Mom, you're too much work for me!  I want my life back!"  The members have ideas about what to say and how to approach this idea.

 

 

I wanted to post this hear cause I would love to hear from those that suffer from the disease and not just from caregivers, 

Also how would you feel, would you rather someone be honest about the disease and progressio or would you rather someone lie and feed false hope like my moms doctors want me to do. I believe honesty is the best policy but I have been told this is wrong so I was also wondering. 

 

I don't know what false hope you mean.  In my case, when I still believed I had Alzheimer's Disease, I fell into a deep depression.  But I came out of the deep depression because I decided that for myself, if I did have Alzheimer's, I was not going out like a victim!  I would go out like a pioneer--a Dementia Pioneer!  That motivated me to follow Best Practices more diligently and to participate more on the boards in order to learn all I could for myself.  There were more patient members posting in those days and we encouraged each other.  This is not to say we expected to find a miraculous cure, but that we would have some modicum of control over how to spend the rest of our lives.



Being as I cannot have this conversation with my mom cause it always comes down to me being a horrible child for not taking care of her and doing what is best for her general well-being verse my own. 

 

Stop having this conversation!  Reframe it.



I just want to know the truth you can be blunt and as honest as humanly possible no need to hold back. I have ask caregivers what I should do, and have told them my story but I have not done much to reach out to those who are directly impacted the choices caregivers make which is unfair in my opinion and why I try to keep my mom in the loop as much as possible, your choice matters. 

 

As Michael said, each person is different and each family situation is different.  Decisions should be based on care needs.  Also consider the effects on the people concerned, you and your mom.  Do not listen to outsiders who never have been caregivers, they just don't know enough.  Read as much as you can and learn from the members.  Talk with a Care Consultant on the 24/7 Helpline.  Attend an in-person AD support group.

 

 

What type of compromises would you find appealing. My mom’s issues stem from the fact she is not a self starter and hates to be alone. Though she handles everything else more or less on her own but does act up if she is left alone.

 

PWDs eventually lose the ability to initiate or to follow through.  This is loss of executive function ability.   So don't expect this of her.  Learn about AD, it's not just memory loss.  Read "Understanding the Dementia Experience" online in pdf.  The members will have the link.


Many PWDs do become anxious when alone because they no longer remember what to do and they don't feel safe, even if they don't verbalize this.  She looks to you for guidance.  


If she has Alzheimer's Disease, I doubt that she does everything on her own.  Read about instrumental activities of daily living.  Read the "Stages of Alzheimer's".  Check her home for safety issues, especially in regards to the stove and cooking, chemicals she might mistake for a beverage and driving.


The short answer to your question is that you will be a loving child to find the best care for your mom.  Then visit her and supervise her care.  Moms don't want their child to be miserable.


Iris 

 .



Unknown By Man
Posted: Tuesday, December 28, 2021 8:36 AM
Joined: 12/23/2021
Posts: 97


This will be all over the place I am currently on mobile and this forums layout is less than ideal. 

Thanks for the feedback, I appreciate it a lot. Unfortunately it would personally cost me a great deal to put my mother in a good facility. They are far too expensive in my area, and many of the good ones require a two year private pay commitment to even be put on the Medicaid bed list. In short I have been told by the case workers and social workers currently helping me with finding approbate placement that you get what you pay for. 

I do understand she may have may be unaware of her own limitations and decline. Though she is aware she has VD, and she is cognizant that her memory is failing her, she has came up with her own system to help her mange. She is still at the point where labeling works, and still able to use the microwave and electric tea kettle. She still able to dress, feed, bath etc . . . All her own. She does her own makeup still, in the area she has a route and rhythm she is able to go the store on her own and come back. Anywhere else she will get lost but she has lived her for large portion of her life so I assume long term memory kicks in and it is akin to an auto pilot function. I do track her, and many in the neighborhood do look out for her, they just avoid spending time with her. 

We have had her evaluated her progression and her functionality is still at the same base line from after her stroke it has not declined. What is being impacted is her memory though it is largely possible the the memory loss is not solely related to the VD, but the stroke itself. Cause their is too much if a disconnect. I do not let her drive, but she did pass her written and a road test with flying colors I was personally curious that is why asked a driving school to test her. 

Reason I am hard pressed is because we have explored a plethora of medications to try and combat her more aggressive behavior she was even admitted into a geriatric psych and their action plan was mostly social interventions, since medications and my mom just did not play nice and in some cases were pushing the higher dosages where safety becomes a major concern. 

Many of her behaviors also may not even been the VD, she does have other mental health issues so it complicates matters. Yesterday I got off a conference call with a director of a memory care facility and their care team after they interviewed and evaluated her for placement. Granted, this was only one place but it was one of the few that I could comfortably afford for a time that had a Medicaid bed list. I was told they were not be able to take my mother unless I gave them permission to sedate her. Cause unfortunately the action plan she came in with is not something any place will easily be able to do, unless I provided the one-to-one. Which will cost me greatly cause not only am I paying for the MC, but would also have to pay for the one-to-one. 

They told me I know this is not what you want to hear, but what your mother needs are places that do day trips often, more social interactions outside the facility but with COVID you will be hard pressed to find many that still do activities such as that. Ones that allow her to freely roam and being as this place just had a MC floor, she would not exactly be able to freely roam. 

I am currently awaiting an appointment with her doctors to see what we could give her that would relax her enough, but also given she has had a past with substance abuse they do not want to give her a controlled substance cause that could increase her agitation if they limit how many she can take. 

In the end what makes things murky is she is self aware she has limitations to a degree, her behaviors are more so used as a means of getting attention then anything else. Like when she claims she wants to kill herself she always mentions it when I am not paying her attention, and if I call her out on it she always backs down ALWAYS. Even if she does try it is always in front of someone—she did this a lot with my dad prior to me being born according to my dad. She has always been a manipulative person. 

I have cameras around the entire house, and motion sensors around more sensitive areas like the bathroom. So if i get one alert for her entering but if I do not get one for her leaving I know something is up and I can manually turn on the camera in the bathroom to see if she is okay. I never had to use it yet thankfully. 

My father and I dealt with a lot with my mom prior to the VD, she has a plethora of mental health issues, that exasperate the VD, Which in turn complete the matters cause if we were dealing with one or the other placement would not be so bad cause treatment would not have be treated so carefully. 

That said thank you again, I do understand that in the end it is my duty to keep her safe, and at times comfort has to be given up to maintain safety. I just wish my parents did a better job of making sure they were taken care of in the future, though I guess in a way they did cause they made sure I was able to establish myself I just do not make enough to cover the ideal care. I have also spoke with many firms that often become appointed guardians for their feedback and advice. Was not the best, I forwarded them over my mom’s records and asked if they could give me a general idea what their protocol would be, While generally for the most part they will try keep people in the community as long as possible. All of the said her case is far too complex, most likely what will be done is they will admit her to a geriatric psych ward to see what they can give her that to claim her down no matter the side effects, once they find that they will place her in a SNF where she will be sedated but comfortable. 

They advised me if I want what is best for my mom in the moment follow the doctors advice and do not play her. Though if you want what is best for you just place her. As you mentioned her behaviors are what make this matter most complicated, and to a degree I do think she knows this cause she has told me that if I place her I will regret it. 

Oh well either way I gave myself six months to find the best possible placement for her, and another six months to help her get use to it. I guess in reality no real means to cope with such a choice.


Crushed
Posted: Tuesday, December 28, 2021 1:18 PM
Joined: 2/2/2014
Posts: 7196


If you had a child would you hate them for forcing you to spend your twilight years alone in and uncaring and unloving environment for their own convenience?

IM SORRY BUT YOU MUST GET THIS SELF DEFEATING  LANGUAGE OUT OF YOUR HEAD 

I have two daughters and five grandchildren.  My wife has Alzheimer's. There will be no one to care for me.  I know that .   My children will chose what facility I go  to.  I AM NOT A SELFISH person  who says that my care and comfort is more important than them having a life.   I have had a life. a fine life.  I have no right to deprive them of theirs.

What kind of parent deprives their child of a real life?    

  I could go on but you get the idea
 after all you said She has always been a manipulative person.

You also need an elder care lawyer   Chemical restraints are often a violation of law.

 

https://www.crisisprevention.com/Blog/Chemical-Restraints-in-Nursing-Homes


  not to mention any suggestion that they would not comply with a plan unless you paid for supplemental aides is a violation of law.

 

  
  


Unknown By Man
Posted: Tuesday, December 28, 2021 4:35 PM
Joined: 12/23/2021
Posts: 97


I have spoken with multiple elder care attorneys, it appears they are are legally allowed to use chemical restraints if they can prove other means of less restrictive measures did not work through observational documentation. In short they just need a doctor to sign off on it. Even if I wanted to sue I could provide proof she was fine in other places but unless I am around the facility 24/7 I have no means to prove other wise. I even asked many lawyers about cameras and what have you. It appears given the shared room I would need approval of the neighbors which most likely will not be granted for understaffed reasons. Also I found out just because she needs a one to one if they are not a 1to1 facility they do not have to provide it, lowest I have found in my price range was 8 to 1. Part of the reason why they also state they will not take her unless I grant permission to use such methods if need be.  

When I was away they called and asked if they could give her haloperidol I told them no that I am on my way in the past she was on it and had a seizure and vomiting. They still gave it to her thankfully I was already on my way back she was only experiencing the vomiting. When I confronted the doctor about why did they call me to ask for my permission yet still gave her the drug that is wrong. He pretty much told me to f--- off, and went on how because you cannot handle her you expect others to handle her. World does not work that way if you want care you can control either do it yourself or pay someone to do. Do not expect medicaid to be some magic bullet that affords you the best treatment possible. Alzo went on telling me why do I think she is so entitled to one on one care when the entire floor needs care. She was going into other people's rooms screaming and we could not redirect her so you expect us entertain her because she was scared. Went on to tell me how his staff ended up disturbing him at 10:30pm while at home because you refused to give permission to the NP to give her the drug. He also mentioned if you are thinking of suing me then why not use that money to care for your mother. More or less he did chew me out. He was not wrong I am expecting others to do what even her own child is unable to do because it is their job.  I am trying to pick the best place but it is rather complicated.

More or less many lawyers have told me it is less about what they can or cannot do and more so what you can prove they did or didn't do. 

Part of my mother's action plan currently or ideal situation is for her is to have me supplement what little insurance covers to provide the homecare needs. Her care team would like to see her stay in the safety and comfort of her home until she progresses further along. 

Though yes I do need put that mindset aside, overall guess I am seeking validation cause my mother will hate me for putting her in a home even if she was not sick she would think she is entitled to live with me especially cause other people do it and expect it like the church she goes to. 

I get I have a self defeating attitude towards this and I am expecting everything to fall into place. I just hope I can find a decent enough place that will grant her a medicaid bed after a set amount of time doing private pay.


Iris L.
Posted: Tuesday, December 28, 2021 10:05 PM
Joined: 12/15/2011
Posts: 17899


Apparently your mom has vascular dementia which has differences from Alzheimer's Disease.  I don't know if anything I posted made an impression with you.  Harshedbuzz has a lot to say about alcoholic dementia.

Iris


Jo C.
Posted: Wednesday, December 29, 2021 3:17 PM
Joined: 12/9/2011
Posts: 12727


This is a much more complex situation and more difficult for you for a variety of reasons. If I am recalling correctly; you did inform us in another Post on a different Forum that you are on the spectrum and this affects on how things are seen and also can affect communication.

Your mother, if I am recalling correctly is also schizophrenic and has bipolar disorder in the mix along with newly diagnosed dementia.  This is all highly complex in multiple ways.

No care facility can care for a patient who is highly agitated and out of control and a danger to others as well as to themselves should they become injured.  There are medications to assist, but I do not know if your mother is on any medication for these issues at all.  I do understand through your writing that you removed her from Gero-Psych early and also have felt it necessariy to refuse different meds due to their making changes in her and your very sincere concern for her well-being.  I can understand the difficulty.

The first thing I would share would be STOP telling her what you are going to do with her in a year or so; or that she has to be moved; or even that she has dementia. Her ability to process and reason and her judgment are no longer there.  Her brain is damaged from the dementia on top of her schizophrenia and bipolar disorder.  Being on the spectrum can sometimes make communications a bit more difficult with recognizing the delicate balance in how and what one communicates.

For success, there will have to be a point at which there is trust with a medical professional to put together a plan of care for your mother that you are comfortable with.   That is going to be necesssary under the circumstances you describe and without that, there will be no placement acceptance in any a facility whether that is private pay or a facility that accepts Medicaid patients.  They must be able to take care of the person without endangering staff and other residents. 

This is a very difficult place to find yourself and I do understand how earnest you are in trying to find a way to move forward.   To do this, perhaps it would be best to begin with your own feeling of comfort with a medical professional you trust who can put together that treatment plan for your mother; that may be the way to success for a desired outcome.

Sometimes we have to learn to let go a bit before we can get to success; I had to learn that the hard way myself.

I so hope you will be able to find what is necessary to bring you to success in what you are seeking for your mother's care and your own peace of mind.

J.


Unknown By Man
Posted: Wednesday, December 29, 2021 3:57 PM
Joined: 12/23/2021
Posts: 97


That is the thing her current care team is of the mindset that social intervention is the way to go verse medication at this point. We have explored many medications but unfortunately at the safer dosages they do not alter her behaviors. We have been trying to find something that works for nearly a year. The fear of altering her temperament was a mutual decision from all parties evolved not just myself.

Personal I have asked to go back to giving her 5mg of Valium she use to take it before when she was younger according to my dad but unfortunately given her history with substance abuse with controlled substances when she was younger it is unlikely I will find a doctor willing to prescribe it again.

I do understand that she will forget and may not understand but she does ask me what is the plan cause she is aware she cannot stay in her apartment forever. So I do tell her the truth, I have never really been able to personally lie to my mom. Same thing when she asks me what is wrong with her why is she so forgetful things like that I do find myself telling the truth. Lying becomes stressful for me cause I have to then keep track of the lies and that makes me nervous and stressed out. Know it is silly but telling her the truth is more so for me then her cause lying to my mom utterly stresses me, each time I get mini anxiety attacks.

I try to deflect but at times when she is more lucid she is fairly persistent and does push the issue so I often cave. 

I have been open with every facility I am okay with need to use medications if they exhsusted all over options but it just seems like they do not even bother to try the social interventions that are part of her care plan from her current care team. Interestingly enough it appears the fact I still have my mom go to the gym and allow her to part take in weight training still is also part of the problem cause she is extremely fit for someone that is in her 70's. Weight lifting and swimming are one of the few things we have in common and have bonded over.

That said I get the fear but it just seems like these facilities think I am being unreasonable when lack of medication was also seen as the best course of action at this time since with the proper social elements in place she is manageable. 

Though by letting go do you mean switching the doctors my mom has a history and good relationship with is the best course of action. She still recognizes and know la her doctors by name, I feel weird removing that comfort just to get other doctors that are more likely to create a plan of care that does use medications more actively. Her current plan medications are more so a last resort, but it appears many want it to be the first line of treatment. 

Though medications especially the dosages she would have to take them at does kill her drive to do much of anything she is barely a self starter anymore which I understand is standard progression. 

Edit: I have gotten a few call backs today for them to take her she has to be on an treatment for her schizophrenia and bipolar disorders which means I will have to find entirely new doctors for my mom cause her current doctors do not feel they would be a benefit cause her behaviors are manageable without medication. 

Is it really so far outside the norm to have a one to one care in a facility? Unfortunately I cannot afford both the price of a facility and to hire a one-to-one.


Iris L.
Posted: Wednesday, December 29, 2021 7:53 PM
Joined: 12/15/2011
Posts: 17899


Unknown By Man wrote:

That is the thing her current care team is of the mindset that social intervention is the way to go verse medication at this point. 

I am going to assume that by social intervention you mean managing her environment.  Watch a lot of Teepa Snow videos perhaps take a course.  That is her specialty.

We have explored many medications but unfortunately at the safer dosages they do not alter her behaviors.

Are you working with a geriatric psychiatrist?  They are the specialists in prescribing psychoactive meds.  Higher dosages are often needed.

 

 We have been trying to find something that works for nearly a year. The fear of altering her temperament was a mutual decision from all parties evolved not just myself.

I have no idea what this means.  I thought you want to alter her temperament.

 

Personal I have asked to go back to giving her 5mg of Valium she use to take it before when she was younger according to my dad but unfortunately given her history with substance abuse with controlled substances when she was younger it is unlikely I will find a doctor willing to prescribe it again.

Read the Beers List.  Also read about paradoxical effects of benzodiazepines in older adults.



I do understand that she will forget and may not understand but she does ask me what is the plan cause she is aware she cannot stay in her apartment forever. 

I don't know how much dementia she has.  Schizophrenia and bipolar disorder overlap with a lot of signs.  She seems to have less anosognosia than the patients with Alzheimer's  Disease, meaning she is more aware.  

So I do tell her the truth, I have never really been able to personally lie to my mom. 

What you call telling the truth may be instigating some of the problems.  PWDs simply cannot handle stress and complexities.  You are telling her too much.

 

Same thing when she asks me what is wrong with her why is she so forgetful things like that I do find myself telling the truth. Lying becomes stressful for me cause I have to then keep track of the lies and that makes me nervous and stressed out. 

Read from the members how they handle this.

Know it is silly but telling her the truth is more so for me then her cause lying to my mom utterly stresses me, each time I get mini anxiety attacks.

You're making things harder on yourself.

 

I try to deflect but at times when she is more lucid she is fairly persistent and does push the issue so I often cave. 

I have been open with every facility I am okay with need to use medications if they exhsusted all over options but it just seems like they do not even bother to try the social interventions that are part of her care plan from her current care team. Interestingly enough it appears the fact I still have my mom go to the gym and allow her to part take in weight training still is also part of the problem cause she is extremely fit for someone that is in her 70's. Weight lifting and swimming are one of the few things we have in common and have bonded over.

That said I get the fear but it just seems like these facilities think I am being unreasonable when lack of medication was also seen as the best course of action at this time since with the proper social elements in place she is manageable. 

Though by letting go do you mean switching the doctors my mom has a history and good relationship with is the best course of action. She still recognizes and know la her doctors by name, I feel weird removing that comfort just to get other doctors that are more likely to create a plan of care that does use medications more actively. Her current plan medications are more so a last resort, but it appears many want it to be the first line of treatment. 

Though medications especially the dosages she would have to take them at does kill her drive to do much of anything she is barely a self starter anymore which I understand is standard progression. 

Edit: I have gotten a few call backs today for them to take her she has to be on an treatment for her schizophrenia and bipolar disorders which means I will have to find entirely new doctors for my mom cause her current doctors do not feel they would be a benefit cause her behaviors are manageable without medication. 

Is it really so far outside the norm to have a one to one care in a facility? Unfortunately I cannot afford both the price of a facility and to hire a one-to-one.

Best wishes to you and to your mom.


Iris



Unknown By Man
Posted: Wednesday, December 29, 2021 9:44 PM
Joined: 12/23/2021
Posts: 97


She does have one and they are working with us though all her doctors operate under the same affiliate we even work out of the same office space and have monthly meetings regarding the patient care. Which is neat but also makes things rough since they go over changes as a collective.

I have look into her products I bought and also started the stream though yes more along those lines. Though the temperament she was a treatment for about 7 weeks and what happened was she became very paranoid and high combative Though she would just sit and stare out the window. She lost all drive and motivation, then they tried to treat that ramped up insomnia, sleep aids my mother had hangover effect so she stayed in bed cause she just did not like how the medication made her feel.

 
I know this is also common with the progression when I explained this behavior to her doctors my father was alive at the time I was taking his safety into account also. I asked if this was common they did say yes, when they spoke with my and asked what she was experiencing she was mentioning constant moments of fear, did not feel the same, she wanted to die things like that. At that point they asked us if we were comfortable with the way she was or if we wanted to try something new. We asked for their opinion and they said they would like to see how things are without medication for a time and try more social means of intervention, which honestly came down to giving into what she wants. More or less give her the attention she seeks and she is golden. Which was not so bad with my dad around cause we rotated, or did it altogether as a family. 

My ideal situation is we alter it without creating a bunch of other new challenges. The devil you know is better then the devil you don't.

In short we just kept her busy but that was far easier while my dad was alive and I was working remotely. Also helped my wife loved my dad so she put up with it because of him. She hates my mom though when he passed she also lost her drive to help me. Which I get. 

Her behavior are not hard to manage I can do it but it is all consuming and it comes down more so that I no longer want to do it. We have a system that works and she is relatively happy she does have her moments where she will mot do much for the day cause she misses my dad or lash out cause she does blame herself for my father's passing but generally if I follow the system they put in place it works wonderfully. Loads of activities, outings, my mom does enjoy those dementia cafés. 

Just this is a full time gig that I cannot sustain especially with work wanting me to go back into the office. 

I know I make it harder on my self with not lying or withholding details, though does not help she can see right through me. When she said my full name Spanish accent I still nearly sh-- my pants. I am in a very conflicting spot.

In the end I am looking to see about finding new doctors and will take it from there.

Overall this is why her doctors are not on board with me placing her she is doing well but at the expense of the caregiver. Way the frame it why stop a good thing your mom is happy. Though I am miserable.