The Way I Proceeded With Mom's Care

Martin Robbins

Maybe this will help some family members with how to proceed with their loved one's care.  Or, maybe you can derive a plan from my experience.

My mother lived with my sister as her dementia became very concerning.  Mt sister couldn't handle it.  My brothers found her a very nice indepenent living facility, and I flew to my sister's to bring her home.

Next she went to assisted living on the same campus, because her dementia became a danger to herself and others.  Leaving stove on, things like that.  One aide in assisted leaving gave her a bad time while she was on the phone with me,  Big mistake.  I emailed the facility director who, in Pennsylvania, is then required to report it to local police, the Dept of Health, and Agency On Aging.

COVID came and the facility quarantined everyone.  My mother began to decline physically and mentally, calling me day and night, saying she didn't like it there.  So, I rented a towne home and moved her in with me.  We could only afford it because we both have pension and social secuity income.  This is where a new decision-making process begins.

I began to wonder whether I could handle her behavior.  I looked into a dedicated Alz and many memory facilities.  Then she had to go to the hospital for drug side effect, but they discovered she was COVID+ and quarantined her.  The hospital also mistreated her.  She could walk when she was admitted, but, after two weeks there, she could not.  The hospital social worker gave us a list of rehab facilities.  The only two that could take her were not good at all, according to government and online reports.  I had a nurse send a doctor to her room to discuss home hospice with me.  Hospice at a facility was out of the question!  He recommended hospice, and I requested a particular agency who had provided physical therapy while she was in independent living.  And, they were super good.  Actually, they turned me down at first.  But, I phoned their rep at the hospital and told her I had phoned their company 10 days ago, asking whether they had sufficient staff in the case my mother needed them.  (I really did.)  They said yes.  She phoned me back in minutes, saying they'd accept her.  I took her home and the nurses, nurses aides, and equipment started coming.  I had made a correct choice: they are all fantastic.

A medical doctor's recommendation is mandatory in order to qualify for hospice.  One can also remain on hospice for a considerable amount of time, if the health agency can justify it.  One can also go on and off hospice.  The standard period is 6 months, but, as mentioned, can be longer.

What about the home health option, for which Medicare will also pay?  I asked about it due to my mom's loss of ability to walk.  On home health, one can get a lot of phyical therapy.  The same jome health agency I selected for hospice does that as well.  A therapist came for evaluation and concluded it would not be successful.  So, home health was out.  However, one caregiver (an agency nurse's aide) soon had her up and walking all around.  But the visits by aides and nurses were brief.  I still did all the heavy lifting, so to speak.  I asked whether she new anyone who would like to make some money helping me with my mother.  She said, "Yes, me."  Fortunately, we had enough to pay her $25/hr.  She has been coming for an 8-hour shift three or four days a week since June.  I first tried finding someone through agencies like Visiting Angels, but the four most reputable had no one available.  I also advertised on Care.com, but, of the ones who responded, I found no one I suitable.

I still doubted I could be a successful caregiver.  My search of facilities was an eye-opener.  Hospice would still be paid by Medicare, but the additional cost room and board would be required on top of that.  And, that was anywhere from $6,200 to $10,000 per month.  With the horror stories I'd already beed told about facilities by nurses, the decision was easy.  She'd stay with me.

What about Medicaid?  Medicaid would never come into play for us.  Although we are not wealthy people. my mom still made too much on pension to qualify.  Additionally, Medicaid would also mean nursing home, as all the assisted living and memory facilities are "private pay."  My mother would have to have a great need for skilled nursing prior to even considering a nursing home.  (Don't be confused.  Nursing homes are not personal care homes.  Assisted living is personal care.) 

Lastly, the Bureau of Veterans Affairs will pay a pension to the wife of a deceased veteran who served in combat.  My mother qualified under the total dollar assets cutoff, but did not qualify under the annual income cutoff.  There is also "Aid and Attendance" pay for which she also could not qualify.  These prorams would have meant about $13,000 per year for my mother.

Hope someone can use this information.

SusanB-dil

Hi Martin R - I find it very helpful, especially since we are not quite to that point as yet. So, yes, some points in particular very good to know. It sounds like you had some help getting some things lifted off your shoulders.

Please do know that you have done a fantastic job! 

And how are you doing, now?  

Martin Robbins

Thank you! for asking, Susan.  I had a tele-session yesterday with my doctor.  Told her about my current circumstances: basically, watching my mother die.  Told her I would like something in the way of a mood elevator or mood eliminator.  She prescribed buspirone (Buspar) 10 mg twice a day.  It helped almost immediately.

I was diagnosed many years ago with PTSD from military service in Southeast Asia, and other "stressors" (I also worked for many years as an FAA air traffic controller in Washington, D.C.). The main malady being hypervigilance.  So, you might imagine I felt a need for something.

Doctor also upped my sertraline (Zoloft) from 150 mg to 200 mg.

So, I'm taking increased dose of Zoloft.  Taking the Buspar.  And, using the prescribed Restoril to knock me out at night.  No side effects, thankfully.

SusanB-dil

I understand. Glad you got some help with no side effects!

It is hard to see LO in such decline. We care for my mom-in-law, stage 5 and steps into 6, was a teacher.  My mom was a nurse with bachelor and masters degrees, now thinks I am her sister. Mother kept a fairly sunny disposition, while MIL, not so much.... 

Martin Robbins

God bless you, Susan.  And, thank you for being here.