I want to help my mom help her mom, but I don't know what to do

steve8091

Hi everyone - first-time poster.  I apologize in advance for my complete lack of knowledge and understanding of the disease, but I'm trying to figure out how I can help.

My grandmother has been struggling with Alzheimer's for several years.  She lives in an independent living facility, and has full-time caregivers, including my mother.  I'm sure that what I will tell is a very familiar story, so I will keep it brief to begin.  My grandfather, who was really the center of the family, passed away about ten years ago.  He and my grandmother had four daughters, who are scattered geographically around the country.  Since he passed, my grandmother moved several times to be near different daughters, and about 4 years ago she settled into independent living near my mother.  I'm not sure whether this is worth mentioning, but my grandmother was never a particularly kind woman.  As long as I can remember, she has been verbally abusive to her husband and daughters.

Since settling in near my mother, her Alzheimer's has progressed.  She has gone from almost fully-functional, to needing light help, to needing help with basic needs (eating and hygiene), to (in recent weeks) being extremely combative, physically attacking caregivers and threatening her life and others.

My mother, as one might expect, is exhausted.  I try to reserve judgement, but I feel like my mom has taken on herself far too much for far too long.  She is (like me, so I completely understand) a very independent thinker and very slow to make decisions.  We and others have tried to give support (and when specifically requested, advice) from afar, but we don't tend to see any action as a result.  Again, I give no judgement on that - I can't even imagine what she is going through as a caregiver.  I just want to help.

The last time that I spoke with her, it felt different.  It felt like she was finally acknowledging that she is drowning, and she just wants someone to tell her what to do.  We have not been close to her day-to-day, and we are trying to put together all of the pieces to give her that help, which is what brings me here.  I'm not even so concerned that she follows our guidance; I just want her to feel like she is supported.

I have no idea where to start.  She wrote me a 2-page synopsis of the most recent developments.  My grandmother should probably be on anti-anxiety meds, but she isn't.  It sounds like my mom is ready to go down that road, but she wants a doctor's guidance.  While they have used a few, they don't have much of a relationship with any specific doctor at this point.  She is not in a position (mentally and emotionally) to go to an office visit.  And then there is the issue of my grandmother becoming violent and threatening (more so than usual) in recent weeks.

What do I do?  Try to get her set up with a doctor?  Figure out how to get her on anti-anxiety meds?  Take more drastic measures to get her into palliative care?  Does she need a long-term care facility?  How do we take that step?

Any and all advice or opinions would be greatly appreciated as I try to help my mom.

loveskitties

Welcome to the place no one wants to be, but is out of love.

For what it is worth here are my observations from the info you shared:

Independent living is not set up to provide what your grandmother needs, even if you bring in 24/7 caregivers.  In fact many IL facilities will insist residents transition to assisted living at the very least at her abilities.

If she does not have a regular doctor, she needs one.  If she has one she needs to be seen to determine if the are ALZ related or perhaps there is another cause.  This would also be the time to discuss her needs for meds.  If she can't be seen for an office visit, have her admitted to ER...sounds like her threats would get her a hold in the psyc ward for eval.

You have taken a good first step to arm yourself with information.  I am certain others will be along shortly to add more suggestions.

M1

Welcome Steve, you've come to a good place for advice and experience.

Two things come to mind:  first, you might encourage your mom to look at this forum also, it might help her.  Second:  encourage her to ask for a hospice evaluation.  Hospice for dementia patients is a bit different than for cancer patients (the common other scenario); she might qualify even if she's not at death's door in the next six months, and it might be a tremendous help to your mom, including provision of aides, nursing support, and anti-anxiety meds.  There is NOTHING to be lost be asking for an evaluation--you don't need a doctor's order for it and it's covered be Medicare--and in fact, many folks ask for evaluation from more than one agency.  If she doesn't qualify, so be it--but you don't know until you ask.  Good luck; I'm sure others will chime in as well.  

Good luck, this is hard for everyone.  

dayn2nite2

Your grandmother needs memory care.  She’s even beyond assisted living.  Why is she still in independent living?

Rescue mom

If grandma is attacking aides/staff, I am surprised the facility has not  “asked” for her to leave. Many ILs will not allow such behavior. What if she really does hurt somebody? You could all be in a world of trouble that gets beyond the control you have now. 

As someone already said, hospice might help. Or somebody could get her to the ER during an episode, or call for emergency help, and have her taken to the hospital. Threatening self harm, or others, may be enough for that to happen.

She sounds way beyond IL now; MC seems most likely, and somebody should probably start looking at facilities close to whoever is the caregiver/in charge.

A doctor—whether from Hospice if that works, or a facility—is needed for anti-anxiety Rxs, so you’ll need a doctor first to get the meds. (Not clear if that was mom or Gm but in either case). And there’s always the chance that another treatable illness is involved.

There is another thread under way here about how best to move someone who’s unwilling, into MC—it’s often presented to the PWD as a temporary rehab situation. But first you need,to find a facility.

steve8091

Thank you all for the replies; I greatly appreciate the support.  There are more pieces to the puzzle that I didn't lay out in my initial post, and if I am being honest, I myself am fuzzy on the specifics and timing of each piece.  What I can tell you is that my grandmother has spent time in both memory care and in hospice over the last few years, and was ultimately discharged from both.  In memory care, the other patients kept walking into her room, which terrified her.  She was essentially screaming in her room for days.  At one point in hospice, they released her with three days to live; that was a few years ago.  She has since had what was believed to be a heart attack during COVID, and she was never taken to the hospital.

At the core of this, one of the four sisters has a very "stop at nothing" mindset to keep my grandmother alive.  Outwardly my mom disagrees, but I think that she has a lot of pent-up-guilt that is making it easy for her to fall back on that approach.  This is where I think that I (and my sister) can come in - to help her make the RIGHT decisions, balancing my grandmother's quality of life in the equation, and managing my mother's guilt.

We spoke to a care consultant at the Alzheimer's association as well, and they had similar recommendations to what several of you all have suggested.  In my mind, she needs to be evaluated, minimally for anxiety meds and hopefully for long-term care.  The immediacy of that evaluation should depend on how much of a danger she poses to herself or others.  We should (appropriately) use a specific outburst as the driver to hospitalize her and to accelerate both physical and psychological evaluations.  If things settle down, we can follow through normal channels with her doctor (who again we need to re-establish a relationship with).  I am having trouble quoting the posts above, but for those who suggested I ask for a hospice evaluation: pardon my ignorance, but who do I ask?

As I write this, I can't help but wonder if last time, my grandmother was put prematurely into hospice/memory care, and that is making my mom hesitant to go down that road again, even if it is much more appropriate now.

Am I thinking about this the right way?  Any other thoughts?  Again, I sincerely appreciate the support.

jfkoc

#1 you must get a Dr on board. This illness demands a team.

#2. make certain that Dr treats dementia on a regular basis.

#3. review to see if her diagnosis process followed accepted protocal.

There is no doubt that your grandmother needs 24/7 care. Now is a good time to shop for that and please make staff training the first criteria. That applies to in home or at a facility.

It is certainly all right if you work on these with your mother. One of you will make the appoint and one or both of you will take your grandmother.

You and your mother will collect your notes and get to the Dr before the appt.

Hospitalization as a resource? I would research to see if your hospitalization choices include one with excellent training in dementia. 

A well trained staff will improve all of your lives and probably reduce the amount of drugs perscribed.

How to help your mother? Listen then ask how you can help.

M1

Steve, if you decide you want another hospice evaluation now, you just call the hospice agencies yourself.  No doctor's order needed.

Sounds like a complicated situation, as most are.  For those questioning independent living--if she has 24/7 paid caregivers, I don't know that you need to move her to memory care again, if your family can afford to pay for around the clock care.  But you need for the caregivers not to be driven off by her behavior--that was why I was suggesting Hospice as the most efficient way to get a medical team on board without having to think about changing her living situation.   

Rescue mom

I agree with M1 that if you do have paid caregivers 24/7 for just her, you likely don’t need to change her residence. The problem sounds like being able to *keep* good caregivers if she becomes too aggressive, and meds may help with that behavior. (Of course if she attacked other residents or staff, that’s a different thing). Cost is another issue, private caregivers 24/7 are usually much more expensive than a facility.

As for being on/off Hospice, it’s not unusual for some Hospices to “drop” dementia patients if they improve in certain ways. It’s sort of like they become too healthy (in body) to qualify for Hospices. Dementia alone—with no significant physical problems—may not qualify for Hospice. 

My own mother, who had major dementia, went in and out of hospice several times, depending on various physical conditions. That said, different hospices have different rules. Always best to call the ones around you, to find out. The hospices can come and assess with just a caregiver request, you just call the hospice and ask.

Jo C.

Hello Steve, you are a kind and caring son trying to find a way to help your mother and your grandmother with the challenges that seem to be escaping intervention.  There is going to be no shortcut for this; specialist professional help is needed beyond the primary care MD and at this point, it is unlikely that anti-anxiety meds will be the answer for what is happening.

From what I read in your Posts, it appears there are multiple issues.  You do mention that the worst of the behavioral problems are fairly recent, beginning a few weeks ago.   You also mention the fulltime caregivers and that your grandmother needs assistance with hygiene and "eating."  I do not know whether that assistance with eating is simply providing her food and perhaps overseeing her eating or whether she needs to be spoon fed or not.

Basically; your grandmother does not appear to fit hospice care at this moment unless there is more happening than has been Posted.  It is also in all probability not a "tranquilizer" she requires to meet her present needs; she may well need medication that is in a different class of meds.  A dementia specialist can best address all of this.

What I do pick up on is that there may as well be unmet needs that  may be contributing to or causing the recent ramping up of the noxious behaviors.  Sometimes, our Loved One (LO) will develop severely negative behaviors because they have a "silent" urinary tract infection.  These are called, "silent," because there will be no complaint of pain, burning or frequency, but there can be a very dramatic change in behaviors to the negative side of the ledger.  It would be a good move to have a urinalysis ordered by the doctor AND to ensure that a culture and sensitivity is ordered.  It is NOT sufficient to just have a dipstick test done - they have been proven to have a very high error rate.  NOTE:  If there is a UTI, it may be helpful to have that treated, but it is unlikely that will be the answer for all that is present.

Secondly; what would benefit your grandmother would be not only for her to have a complete exam, assessment AND a review of the meds she is presently taking by her primary care MD; but . . . . though our primary care MDs are awesome at so much, they are not on the cutting edge of dementia dynamics; therefore, great help will finally often come from a dementia specialist. I found this to be so through personal experience with my LO. 

My mother was misdiagnosed with Alz's Disease by her Board Certified Geriatrician and medication was initiated, but things continued to get worse and the behaviors were over the moon.  I realized something was strongly amiss and made an appointment with a good Neurologist who sees dementia patients as a routine part of his practice.   It was the best thing I could have done.  He did a complete assessment/exam; he had a SPECT Scan done as MRIs had showed nothing; he also assessed the meds she was on. It turned out that my mother did not have Alz's; she indeed had a behavioral variant of FrontoTemporal Dementia and was on contraindicated meds.  What a difference that specialist made.  The behaviors were definitely FTD generated.

My LO was so far compromised, and she also had rigid false beliefs that also accelerated her behaviors; those false beliefs are called, "delusions."  Things were so far advanced and lesser measures did not help, so she was admitted to a GeroPsych Unit for a short stay..  The behaviors were so dreadful and this made the quality of life for my LO greatly compromised. When I got her to Neuro, after assessment, he decided to initiate a very low dose of Risperdal and to my utter amazement, within about 24 hours all delusions were quelled; but more than that, the dread behaviors also ceased.   Not perfection, but SO, SO much better without anger and fury.

If things are so dicey with behavior and all lesser measures to assist fail; as noted above, there is also the option of having our LO admitted to a Geriatric Psych Unit for complete assessement on a 24 hour continuum.  GeroPsych is the necessary type of psych unit, (not just an ordinary Psych Unit), and can be found at various med centers.  Simply another option as decided and ordered by a physician; preferably a dementia specialist.

Do a little research and find out which med centers/hospitals near your grandmother have a GeroPsych Unit.  Next time grandmother goes way off in behaviors if she has not had a dementia specialist on her care yet, have her taken to the ER whether by ambulance or private auto.   When in the ER; request an assessment for GeroPsych Unit admission.  Also, a primary MD or a dementia specialist can write the order for GeroPsych without going to the ER; the patient must be referred by a physician and will be followed by a geriatric psychiatrist while in the GeroPsych Unit.

With my mother, the physician did order a GeroPsych Unit assessment; but being savvy to behaviors, he told her she needed to have an x-ray at the hospital and sent her to the  ER with me along of course. While she was on the guerney in the ER, an RN from the GeroPsych Unit arrived and did an assessment without saying who she was or where she  was from. She simply seemed like any other nurse.  It was obvious that my mother was highly compromised and she was admitted to GeroPsych through the ER.

Really; a good dementia specialist can be the most essential part of the care team.  If your grandmother should go into the hospital, then it is easiest to make a change in living accommodations at the time of discharge. She sounds as though she is definitely not in the most appropriate living setting for her condition.  Everyone seems to be being held captive by her behaviors and lack of a professional captain at the helm to adequately steer the boat; there are answers for that as mentioned above.

Your poor mother needs some relief and more than anything; a direction for getting her mother's needs managed.   That dementia specialist and if needed, even GeroPsych admission may well get things on the right track.   Anti-anxiety meds will in all probability not do the trick at this point; more is necesary and that will come from professional help.

Also; your mother is more than welcome to come here and interact; she will be understood and supported.

Please do let us know how things are going; we will be thinking of your mother and grandmother and we truly do care.

J.

Cynbar

Steve, I think you need to start with a medical evaluation. When a situation gets as complicated as this one, it's easy to get paralyzed by so many decisions that have to be made --- but the first step should be contact with a doctor. If she had a doctor but has drifted away, call them and see if they can send someone out to see her ---- some MD offices have  nurse practitioner who goes out instead of the doctor. If that doesn't work out, ask the IL staff if they can recommend a doctor who will come to the facility (or send his NP.) You can also do some research to see if any MD practices in her area advertise house calls. But if none of that pans out, it will probably have to be an ER exam --- have your mother call 911 when grandma is violent or threatening self harm. A doctor needs to assess her physically, probably order blood work and other tests, to see if there is any underlying medical condition going on. Then, the doctor can refer to a neurologist or geri psych (the ER may send her for an in-patient geripsych admission to try and get her behaviors under control.) Once all of the above is done, a hospice evaluation would be a good idea, but they will require medical info before making a decision on her eligibility. And hospice does require a doctor's order for the eval , sometimes it sounds like they don't because you can call hospice and request an eval yourself, but it doesn't happen if they don't get a MD order (they often take care of getting it but need a doctor to call.) All of the questions/possible solutions at the end of your post won't happen without a MD.

kyronae

Others have said a number of the essential first steps:

1 - Find a GP or reestablish contact with her current GP.

2 - Find a dementia specialist or hospital with a neuro ward where she can get a thorough assessment and a review of her needed meds.

3 - Potentially contact local hospice organizations for an evaluation and talk with her current caretakers to see if you can see when/how behaviors have been escalating.

In addition to those wonderful suggestions, please consider urging your mother to look into counseling if she hasn't already, and point her to this forum if she'd like to take advantage of the community as well.

This is an incredibly isolating disease, for both the loved one (LO) and the caretaker(s). It makes a world of difference to know you aren't alone and to have a safe place to vent, question, and just generally FEEL. Especially since you mention that this is a very complicated and difficult relationship for your mother, she deserves all the support she can get. It's absolutely wonderful that you are looking out for her, and I don't want to diminish that, but having a professional who isn't involved with the immediate family can give her a place to deal with feelings or questions she doesn't want to share with you or others who might be impacted by them. 

I wish you and your family the best on this difficult journey.

steve8091

I can't thank you all enough for the support.  I've pored over your responses for quite a while, trying to absorb as much as I can.  Little did I know when I posted this morning how much would happen today, but I thought I'd give an update.

My grandmother continued to lash out today, to the point that she was attacking my mother when she tried to provide care.  I won't go into detail, but my grandmother critically needed care and simply would not allow it.  My sister (who lives within driving distance) asked it my mom wanted her to come down, and she did.  That alone is a major milestone, as my mom has had a lot of trouble asking us for help.  When my sister arrived, they followed suggestions from this group and from the care specialist and had her transported to the ER.  

Since earlier this evening, they have been running a battery of tests to understand what is going on.  They are doing their best to keep her calm and comfortable, and they plan to discuss test results and to create a plan in the morning.  Again based on the advice given here, we have told my sister to request a GeroPsych evaluation either before or as a part of that discussion.

Regarding her IL and 24/7 caregivers, it must be said that a large portion of that care is being provided by my mother.  Several years ago, my mother was her ONLY caregiver; it is only in the two years that she has gotten consistent additional help.  Even with that help, particularly because it isn't always reliable, my mother has played a large role in the caregiving.  That said, I think that a change in living situation is important not only for my grandmother's health, but also for my mother's.

I made my flight arrangements and I am headed down that way on Tuesday to help.  I think that I'm going to sit tight for the moment and await the results of these tests and of the discussion tomorrow morning.

For those that have mentioned it (and I appreciate it), I will say that I've suggested for years that my mom seek out counseling and/or some sort of support community.  I believe that she has done so intermittently, but I don't know that there has been any consistency.  This is absolutely something that I will suggest to her when I see her in a few days.

I will continue to update this group and seek out advice through the coming week (and likely beyond).  Once again, I can't thank you all enough for your support and insight.

The "other" one

Your initial question was how to help your mother.  Ask her how she is doing.  Ask how your grandmother is.  Then listen.  I have been the sole person responsible for my mother for several years, and she sounds like your grandmother.  She took a fall and ended up in the hospital and then to a long care nursing home.  It was sad and hard initially, but it is where she needs to be.  Once there, we could finally get her on anti anxiety meds that she had refused her whole life.  It's not easy even with her day to day care taken care of.  No one can really do much to help, but I would love someone to just check in and ask how I'm doing, or ask how she's doing.  It seems out of sight/ out of mind for most people.  If it wasn't a problem with Covid, someone offering to visit now and then so I could take a few days off would be most appreciated.  

I hope your grandmother finds the right situation and your mother feels supported.  It sounds that she has caring children, so that's a great start.  

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Jo C.

Well done!  What a great deal of working together your family has put together to address this crisis; that is wonderful.  This is the first step to bringing peace to both your grandmother and mother.  I am not certain how much care your grandmother needs as there was not a lot of information.   I was not certain whether she was bedbound, able to walk, feeding herself, able to speak and communicate clearly even if inappropriately, continent or incontent, etc.  You get the idea.

Knowing that grandmother is getting a full medical workup and assessment must be a relief.   Sometimes part of acting out is due to unresolved pain or a physical condition that has not yet been identified which compounds the dementia dynamics.  In any case, this is such a good first step.  Your mother or whoever is the spokesperson for your grandmother can ask for a Neurologist or other dementia specialist to consult while she is in the hospital as an inpatient if the hospital does not have a GeroPsych Unit.  If there is GeroPsych, if your grandmother's physical condition permits, she can be assessed for admission to the unit as appropriate.  If no GeroPsych; best to get that dementia specialist in while grandmother is still that inpatient and not permit discharge/transfer out of the hospital until that has been accomplished; hospital stays are notoriously short for most patients who have Medicare, so we have to be firm advocates for our LOs.

If going to be transferred to GeroPsych, that will be her current "discharge plan."  If this is not going to happen, then it would be best to get ahold of your grandmother's assigned "Case Manager," who will be her discharge planner and ask for names of nursing homes or memory care - whichever will be the best setting for her.  The idea of an Independent Living setting or even an Assisted Living setting does not sound as though that is an appropriate level of care as they cannot deliver the type and amount of care needed.   There are indeed good nursing homes and memory care settings; truly.  One must move fast to assess these facilities as discharge may happen abruptly; as said, this is something that is certain when Medicare is the insurance coverage.  If grandmother  goes to GeroPsych, have your family member coordinating care make contact with the Psychiatric Social Worker on the unit asap.  This is the person that can provide names of facilities that can adequately care for your grandmother at the level she needs so family can visit and assess the settings which will need to be done in an asap mode. 

This is a difficult journey; I have been there. Your dear mother must be exhausted both physcally and emotionally.   She has tried and tried so hard to make a difference and no matter what she has strived to do, it has not had the intended results.  This too I have experienced and it can cause much internal conflict for the caregiver.  Even though we know the brain is "broken," and it is the dementia that is driving the train, it still manage to deeply hurt and can cause much self-doubt and a whole lot more negative feelings.

Do let us know how it is going, we will be hoping for the very best outcome for everyone; your grandmother is indeed blessed with a very caring family.

J.

marisajg22

Hi Steve. I am in this exact situation. My Mom doesn't have any support from her siblings and is overwhelmed by every decision. Thank you for posting and asking these questions. It's been very helpful for me and I will relay the information to my Mom. I've asked her to find a caregiver support group to help relieve some stress and burden. She did get the information, but hasn't acted on it. Good luck with your Mom and Grandmother.