Family therapy/therapist for sibling caregivers of dementia mother?

MiddleChild_Six

Hello all,

My first posting, so please be patient as I try to surf through the forums and resources. 

My mother is a 86yr old widow use to living on her own in a two-story home. I am one of 5 sisters. Three of my sisters live near my mother (one of which is the POA), one of my sisters lives a couple States away, and I live clear across the USA from her. My mother has been diagnosed with dementia just in 2019 (and in complete denial), so it's all relatively "new" given the COVID shutdown the last 1.5yrs of her diagnosis. 

She has taken several bad falls over the last 2 years, and most recent one has her currently in AL with fractured foot, though she has "recovered" but her physician is finally telling her she cannot go home without full-time care (and of course is recommending she not do stairs, etc). They did several evals/studies on her ect...tried to talk to her about all of this. My mother is not having any of it, basically telling the doctor he's crazy (though she highly respects him ironically). My mother has worn down my sisters, especially the one with POA and she is ready to call it quits and "let her go home". My mother has pitted all 5 of us against each other in one way or another...battling the opinions daily. 

At this point I feel we as sisters and caregivers need therapy of some sort. I'm very well versed with dementia (and Parkinson's) as my husbands parents with through this about 10yrs ago. We had to deal with ALs, homecare givers, etc. But my husband is an only child and was able to make all decision himself. It is clear to me that my sisters and I need a medical professional to help us through these tough times...the sister with POA can't do it alone yet feels she needs to as it's less stress and easier for her that way...and we are all fit to be tied.

Obviously we need a virtual type of resource, but if anyone has any suggestions for where to find a "good" therapist specific to family caregivers of dementia I would greatly appreciate it!

Many thanks!

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Stuck in the middle

Welcome to the group.

I can't recommend a therapist, but I suggest you daughters have a meeting and agree the other four will support whatever the one with POA does, without reservation.  You will help her, but no second guessing.  When your mother can't play you against one another, something can get done.  The alternative is to leave the PWD in charge, which is the situation the POA was designed to prevent.

loveskitties

Letting her go home against specific medical opinion is a disaster waiting to happen.  It might relieve the "immediate confrontation" but how will any of you feel is she takes a fatal fall or has an other crisis?

If she can afford and will agree to 24/7 care at home, then so be it, but finding 2 or 3 shifts of caregivers for dementia patients is not easy and they tend to come and go so you are constantly trying to fill the gaps.

As sad and as difficult as it is, her health and safety outweigh her happiness at the changes.

I agree that a geriatric care manager will help all of you sisters, because you have an unbiased party who advocates for the patient and has the ability to do much more that any one person can do.  They also take out the stigma of it being one sister's opinion...as long as you all agree to follow the care manager's advise.  It is expensive but not nearly as much as 5 in therapy with no resolutions for mom.

M1

I second Victoria's suggestion of a care manager rather than a therapist. This person can be objective and can take the emotion out of the decision making. Victoria is also correct that she's not in denial, she has anasognosia. She won't be safe at home alone, and safety needs to drive the decisions.

Iris L.

MiddleChild_Six wrote:

 My mother has been diagnosed with dementia just in 2019 (and in complete denial), 

At this point I feel we as sisters and caregivers need therapy of some sort. 

I think if you sisters understand about anosognosia, it will help you all.  Anosognosia is NOT denial.  It is a characteristic of dementia that causes unawareness of having dementia.  Thus your mom's speech and behaviors will seem to be contrary to reality.  Conflict and confusion ensues among the sisters. 

Instead of therapy, please educate yourselves.  You feel like you all need therapy because everything about dementia caregiving is not intuitive.  You all will have to learn to think differently.  Read the online reading material and read a LOT of threads.  IMO, the best "therapy" is to be prepared.  These members know the most.  You can't go wrong listening to suggestions here.  

Iris L.

Cynbar

I actually think that all of you going into therapy now would only complicate matters. Therapy will work with you on emotions and family dynamics, but those things need to be put on the back burner until you get a solid plan for your mother in place. Emotions will complicate your ability to make a rational, safe plan. But once that is accomplished, go for it. Your doctor's office should be able to make a referral for virtual services. 

Laws vary by state, but all of them have a system where one person is designated as the decision maker, either called a health care proxy or medical power of attorney. There is often an alternate appointed as well, but that person only serves if the first is unavailable or defers to the second. It's not a joint appointment. The reason for that is exactly what you are seeing, if too many people try to come to a consensus, chaos ensues. Your sister the POA is the one entrusted with the responsibility to make decisions for your mother, I hope the rest of you will support her and not feel that you have equal say. A geriatric care manager would be a big help to her in sorting things out, as mentioned above. I hope she will listen to the doctor's recommendations, and this is often a good way to present it to the patient. But in the end, it is her call.

mommyandme (m&m)

I’m thinking all the sisters need to have a meeting, an objective as you can be meeting, about your moms safety.  I don’t think any one sis nor all five should be discussing the hard decisions with mom.  Whether you benefit from the use of a care manager to maneuver through your next steps or not, your emotions will need to be set aside for now.  After any of the many decisions are made, the spokesperson sister chosen can relay the info to mom, if need be.

You should all definitely support the POA sis as long as her process is best for your mom.  Obviously, “letting her go home” is against Drs orders and would be unsafe if your mom is left on her own.  I hope all of you can find some peace today.

Really hard stuff, so sorry!

MiddleChild_Six

@Victoria2020

I cannot thank you enough for taking the time to reply. Your words of wisdom and advise is exactly what I needed to hear. Obviously we all start some place...and I'm in a new world unknown to me!

- Local Dr: unfortunately the very very very small town my mother lives in has less than adequate medical attention in this matter, hence the reason I turned to this forum. We have tried to ask for various referrals, but seems it just never happens (or at least that is what POA sister has eluded to).

- Action #1: Mom's safety - spot on! And to that I already found a GCM near my mother that I've reached out to thanks to your resource you shared. I read through the link (and sublinks) and wow...yes, need to educate myself/ourselves.  I also found out that my POA sister has also reached out to a Elder Law attorney as of yesterday, so that is happening too. I think this is all a huge missing link in how we have been handling (or not) all of this. Game changer!

- Emotions: Yup - again spot on! Your reminder to remove the emotions during this process is key and helps focus on the #1 of solid plan for mom's safety.

- Anosognosia: apologies for my choice of words...though I completely know my mother is not capable of understanding her situation, we all still need to rethink how I perceive her situation to your point. I think all of us are definitely not understanding to this level, and will take this on to help educate me and my sisters. Denial it ain't!

You're generosity in sharing your feedback is most appreciated beyond words. 

Thank you!

MiddleChild_Six

@stuck in the middle

Thank you for your warm welcome and kind advise. 

Support POA: though we feel we are supporting the POA, I hear what you say...without reservations. We do need to focus on this to your point.

Part of the challenge is the POA is worn out and ready to let mom go home without the Dr recommended 24x7 care...not to mention without any kind of solid plan! Even so much as saying she is about to relinquish POA...which I'm trying desperately to let her know that is not a good solution to any of this. This is what has the rest of us sisters up in arms...because the rest of us do not agree that mom should be allowed to go home without a solid plan first. Very hard to not second guess POA when mom's safety is at risk in this situation. 

So hopefully the Elder Lawer and GCM will help us solve that issue asap. 

Thank you so very much!

MiddleChild_Six

@loveskitties

Thank you so much as well for your time and sharing your great advice! 

I appreciate you validating my thoughts about letting mom go home against medical opinion and have repeatedly told POA sister the disaster will be worse on everyone to include mom. Mom has already fallen because she had been home against Dr's advice...and reason she is back in assisted living. It's not a matter of if, but a matter of when she falls again for sure. 

24x7 care at home is most likely not an option at this point. My husband and I had done that with his father, and it was a fulltime job to manage the care to your point. His father did not have the dementia complications (cancer), so he was much more willing to allow care (though it was still tough).

I think you bring up another good point...her perceived happiness...my POA sister believes mother will be happier at home (or at least stop arguing with her about going home every day). I've reminded her that it will just be something else that makes her unhappy even at home (which was the case just a couple months ago). But POA sister is worn out emotionally and not willing to think otherwise...she has a demanding fulltime job herself and can't balance the two. 

Yes, GCM seems to be the immediate answer to get some kind of support for my POA sister so that we can all let her make better decisions for mom who definitely needs a strong advocate to keep her safe. 

Sound worth every penny!

Thank you so much!

MiddleChild_Six

@M1

Thank you so much for your added vote to @Victoria2020 suggestion for GCM. It helps to understand that this is common practice and the first step in taking the emotion out of things to make the best decision. 

I've relayed the anosognosia information to my sisters already as well. Understanding this is going to be key in us thinking differently as a family in order to support the POA sister and mom to be safe. 

So much valuable information and encouragement...thank you!

MiddleChild_Six

@Iris L

Thank you for also drilling this message of anosognosia home to me. Clearly bad choice of words and not a thorough awareness of the situation. Thank you also for pointing out the conflicting results amongst us are all part of this awareness....so true!

Education is KING!  You'd think at this age I would know that, but sometimes I feel like I should already have this kind of knowledge...not sure why I think that. So I've put this on my list of top priorities to educate myself and then share my knowledge with my sisters. 

Learn to think differently - new motto! I appreciate the encouragement to read the materials and threads. I've already benefited from the suggestions received today, and am so very grateful for you and the other members taking the time for me.

Thank you so much!

MiddleChild_Six

@Cynbar

Thank you for netting it out for me! 

Therapy is for sure going to the back burner, and to your point our efforts need to be put on putting a solid plan for mom in place. Emotions for sure are complicating our ability to derive a safe plan, but I think that is because we don't have the right resources in place to assist us in doing so. 

Yes, your suggestion for the health care proxy and medical POA (and GCM) of some sort is much appreciated and makes perfect sense. I've already reached out to find that. Thank you!

We definitely need an alternate given our situation of chaos.

Also needed to hear that loud and clear that we need to allow POA sister to make the safe decisions with us supporting her without the equal say. WOW...that hit home as I see that is for sure causing major anguish as a result. 

Thank you so very much for taking the time to share with me, as I'm so grateful!  

MiddleChild_Six

@M&M

Thank you for your reply as it helps so very much. 

Agree that we need to stop discussing hard decisions with mom, and leave that to the POA sister and GCM once a solid plan is derived. Makes perfect sense now that I think about it, but the confusion for all of us has made it impossible to think straight. 

I think the emotions will for sure be resolved or at least set aside once the GCM gets involved. So I'm hopeful for that too. 

Removing the emotions, focusing on mom's safety and supporting POA sister in the process will be a huge solution and for sure provide much needed peace not only for us but for mom. 

Thank you for the really hard advise as I'm super grateful. 

This forum has been an incredible relief and I appreciate everyone's input so very much!