Sole caregiver-opposing family opinions on how to care for LO

LouLouRed

I am currently the sole live-in caregiver for my 73 year old mother who was diagnosed with Alzheimer’s in 2018. I had moved back with my parents in 2018 due to traumatic marriage/divorce where I lost everything, including my physical and mental health for the most part. In 2019 my dad was diagnosed with cancer of the esophagus (very suddenly and unexpectedly) and I lost the job I had finally found due to having to take dad to appointments as well as step in and care for Mom as her Alzheimer’s was progressing faster due to the shock of Dad’s diagnosis, and within a month there was nothing else that could be done for Dad and he was sent home for me to care for in his last days. He was gone within 45 days of diagnosis. I have been caring for Mom 24/7 since that time and her decline has continued daily. At this point she has to be dressed, most times fed, can’t shower or bathe, doesn’t brush her teeth, barely eats or drinks, is beginning to not know how to use toilet paper properly or even how to pull down her pants, and is disoriented most of the time. I’ve had to beg family to come help me because I am physically and emotionally overwhelmed. I have a sister, daughter, niece and Aunt who have come and stayed and helped as much as they can but I need someone here regularly and even overnight because I can’t physically do the things she needs properly on my own. My aunt is stressing her opinion that I need to put her in a facility to give her appropriate care,  while my sister and niece want to keep her at home as long as absolutely possible mostly due to the COVID issue and being unable to go see her if she’s in a home. My daughter was adamant about her not going to a home until she saw how it’s affecting me as well as how bad Mom is now so she has some understanding that it may come to that. I don’t know what to do. I have no job or money of my own so any paid care-either in home or facility-has to be paid out of Mom’s money and she isn’t rich by any means. I’m at a loss because I see both sides of having her home vs putting her into a facility, but I am not capable of caring for her alone anymore. She gets up a lot and wanders even in the night and if I’m sleeping I’m scared of what might happen to her. We have alarm system but there are many other things that could happen to her if I’m not constantly awake. Plus the hygiene issues are not good for her health either if I’m unable to properly clean her. So despite family wanting to keep her home, no one can come stay here regularly to help me care for her, or myself for that matter. Any suggestions or thoughts?

Quilting brings calm

Honestly?  

People who aren’t sharing the load don’t get to tell you to keep her at home.  People who ARE sharing the load don’t get to tell you that either. 

This is why: 

You cannot sacrifice your health, and your future earnings this way.  You’ve lost everything financially.  You  have a uncertain number of years to get yourself back on your feet before you have to stop working due to your own health.  Do you want your daughter to be supporting you for decades of your retirement? 

You know in your heart that your mom needs care from a staff of people,not just 1. 

windyshores

It sounds like a good idea to consider placing her in a facility.  If your mother does not have a lot of money, nor do you, then Medicaid would kick in to pay.

Has your mom been vaccinated?

Visiting seems to remain limited but once everyone is vaccinated, that may loosen up. Internally, most residents of facilities have been vaccinated so the danger is less, and there may be more socializing and activities soon.

If there is a local elder services agency, maybe contact them, not only for your mother's needs but for yours. I go to a support group and the constant refrain is for caregivers to take care of themselves.

You have been carrying a huge load for too long. Heroic but will harm you.  I hope the rest of your family gets on board. Placing our loved ones doesn't necessarily make them unhappy. And your mom would be safer, while you can actually sleep.

Cynbar

It really does sound like it is time to think about placement, both for her safety and for your own well being. It's ironic (and maddening) that the relatives NOT caring for her 24/7 are the ones advocating for her to stay at home!! Who has the legal authority here, either durable power of attorney or health care proxy? That person is really the decision maker. It's time to start making a plan. First, get a handle on her finances. Does she have the money for private pay in a facility, at least for awhile, or will she need to apply for Medicaid? Second, see a certified elder law attorney, and bring the financial info with you. That person will make sure the necessary legal planning is in place, and can assist with the Medicaid application if needed. Second, look around for a good facility in your area, research them and speak to the admissions office, take a tour if possible. Make sure they accept Medicaid if this will be needed at some point. The good ones sometime have wait lists, but it's worth finding one you are comfortable with. If Medicaid is needed right away, it will take some time to get that approved, so none of this is likely to happen overnight. Hopefully you have legal authority since you are the one taking care of your mom, and can make the decision without the agreement of the others. This process can seem overwhelming, but less so if you take it in stages. It can be done. However, if the legal decision maker is opposed to placement that would be a problem --- come back for more advice if that is the case! Good luck.

LouLouRed

Thank you. It is a struggle I’ve been dealing with more lately and it helps to have others who know where I’m coming from to give advice. I’m going to check into the financial aspects of it all because that will determine what can and can’t be done. I was raised to be agreeable and helpful even to the point of a fault and that’s what I think is making this so difficult. I am trying to think of Mom’s best interest but the other family members thoughts and feelings as well. When I’m the determining factor between opposing sides I tend to lose confidence in myself and what I know is right.

LouLouRed

I do have Power of Attorney and handle her finances. I have been trying my best to eliminate as much spending as possible on unnecessary things just in case her money has to go for her care. I am not the best at dealing with conflict and that makes this so much more painful since the conflict would be with my loved ones if I truly can’t handle Mom’s care anymore. I am praying and really trying to overcome that. Thank you for your advice.

harshedbuzz

Please consult a certified elder law attorney about Medicaid planning if she owns her home. 

If she does, it would normally need to be sold to fund her care but there is a loophold from a family caregiver you might want to explore.

jfkoc

It is good that there is a POA but at this point you must have a D(durable)POA. You may already have that.

Wilted Daughter

You have to plan/do what is best for your mom and you. The "and you" should be emphasized!!! Check in your area for elder services and independent living agencies. Elder services, in our area, has 'Options Counseling' (free service) which helps with future planning and long-term needs. Independent living agencies can offer help with skilled nursing, occupational therapy, etc. to help with bathing...

ALZ helpline can help with creating a plan of action for (placement, Medicaid application, etc.)  Seth Rogen's Hilarity for Charity has caregiver respite grants (wearehfc.org). Lastly, Trualta (trualta.com) provides skill based training for family members caring for LOs at home. 

Hope you find the help you need. 

Luv Power

Hi LouLou ~   You have received good advice here and I would like to share my personal experience in the hopes that it helps you on your journey.

There is a reason that your mother gave you POA.  She trusts you above all else to make critical decisions on her behalf and to act in her best interest.  If she had thought someone else would be a better Agent on her behalf, she would have assigned her sister, your sister, your daughter, your niece or someone else (perhaps unrelated) to make these decisions.  But she didn't.  If she had wanted multiple family members to weigh in on these decisions, she would have assigned equal POA to all of them.  But she didn't.  She trusted you, and you only, to act in her best interest.  

I have a sister who is a bully and not involved at all in any of Mom's care.   Yet, she is constantly trying to tell me what I should be doing.  Really?  She doesn't visit Mom or even know what level of cares she requires, so who is she to tell me what is best for Mom?  I always reply, "I understand your concerns" but I don't let her get me wrapped in my head trying to second guess myself ~ am I doing the right thing for Mom and I know it.  My sister's concerns are hers and hers alone and I no longer let her make me second guess the job I am doing or the difficult decisions I am making.

This change in how I reacted to my sister's input comes from a meeting I had with the Geriatric Social Worker that Mom had selected to be her MDPOA 2nd (someone with multiple degrees and is much more educated than me in these matters!).  I asked her years ago, how could someone who is not an immediate family member, and  doesn't know Mom as intimately as family members, make medical decisions on Mom's behalf should something happen to me?   The SW replied that her job is to advocate for my mother and focus on what is best for her, what Mom desires, not what family thought "should" happen.  Family dynamics and opinions of what they think may be best for Mom was not her concern.  Those words from the Geriatric SW resonated so profoundly with me, that I have tried to act by that example ever since.  It has given me courage to always take the path of what is in Mom's best interest vs. what family member "think" needs to happen.  I advocate for Mom and do not let other family opinions sway my decisions.

The same can be said of Mom's finances.  None of the other family members have any say over Mom's finances.  The POA Fiduciary 2nd (not a family member) that would take over financial decisions (should something happen to me) will also make unbiased decisions based on Moms' needs, acting in her best interest, regardless of what family members might think.  

You have difficult decisions to make and your mother has entrusted you to make those decisions on her behalf.  I hope you find a way to advocate on her behalf, set emotions aside and not let others family members influence your difficult decisions to act in her best interest.  I wish you strength in the journey ahead.

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