End of Life Tragedy (My Story)

Martin Robbins

My mother was declining under the COVID quarantine that restricted her to her assisted living apartment.  She was losing weight as well as her mind.  I rented a towne house in October 2020 and moved her in with me.  Within 8 weeks, 7 of her neighbors at assisted living had died.  I am her oldest son, unmarried and retired.  I have siblings, but I cared for my mother alone.  She was with my sister in Texas but they fought continually.  I had to fly there afew times to settle things and eventually got my mother out of Texas and into a very nice independent living facility.  After a year and a half, she was in assisted living with what we thought was age-related dementia.  I visited her often, and would stay overnight at least once a week.  I found her medical specialists, and drove her to anywhere she wanted to go.  At the next appointment, her primary care physician told me my mother needed to see a specialist.  We (the family) knew she had dementia, but thought it was age-related.  We went to an excellent geriatric specialist here in Pittsburgh.  It was then that we received the Alzheimer's diagnosis.  My mother continued to decline.  She was taking a thyroid med, sertraline, and vitamins, but it was difficult getting her to take them.  I struggled caring for her, but I am told I've done an excellent job.  She tried to run away a few times.  She became combative and behaved contrary to nearly anything I wanted her to do.  (She is very hard of hearing but would not wear her hearing aids.)  She believes I'm her huisband, and she hayed my father.  Her doctor once told me to send her to a geriatric psych unit if I could not handle her.  I did so but with huge regrets.  I had no medical power of attorney (POA), only financial.  My youngest brother has medical POA.  I was not permitted to see her, speak with her, and denied updates on her condition.  They gave jer seroquel which I had the power to prevent, initially.  After two weeks, my siblings had her released back to my care.  I got rid of the seroquel, and began a long correspondence with her geriatric specialist.  He does not take patients, but will consult and evaluate.  My mother began to suffer terribly with visual hallucinations that seemed to replace the auditory hallucinations she'd had for a few years.  She saw two little boys, a little girl, and often a man.  She despaired so much over the safety of the children that I could see the extreme worry in her face.  I tried on the Internet to find a med for her.  I found olanzapine (Zyprexa) amd got it prescribed through the specialist.  Hallucination problems solved!  And without side effects.  She continued to decline w/ the Alzheimer's.  I had an ambulance take her to hospital with bad side effects from mirtazapine she was prescribed for sleep.  Hospital discovered she was positive for COVID without symptoms, isolated her for 10 days, and mistreated her.  They nearly killed her.  When discharged she could no longer walk, lost 15 lbs., and her perineum was ruby red.  At my request, a doctor at hospital evaluated her and put her on home hospice.  I chose the home care company, and they have been wonderful!  I got her back in the shape she was in prior to hospital.  My sister, a retired RN, flew in from Texas to help for 2 weeks.  The ALZ-related decline continued. She became incontinent.  I cleaned her up real well, put her on toilet, fed her, showered her, put her to bed, etc.  I hired an excellent caregiver I found by accident to help me 8 hours for 3 days each week.  My mom is now at end of life.  Can't swallow.  She gets doses of morphine and/or ativan from my sister who has returned.  The caregiver still comes, and RNs visit every day.  Finally, I am not taking it well, watching my mother die,  Her priest came 9 days ago to give Last Rights.  Mom was all smiles, and alter told my next younger brother. "I'm going home."  She moans when I kiss her and tell her I love her many times a day.  I help my sister change her diapers and reposition her on the med bed.  The visiting RNs are amzed she is still alive.  I am a mature man, bnt I cry off and on all day and into the wee hours until I take restoril which knocks me out.  Finally, God bless you! to all of you who are caring or have cared for a parent under conditions similar to my own.

Hoot619

It's so hard watching our loved one lose everything, it isn't suppose to be that way. My prayers go out for you and your mother.

SusanB-dil

Hi Martin R -  your subject says it - it is tragic.  It is hard to see a LO just slipping away like this. yes, sometimes ya gotta cry, that's normal.   ((hugs))   You are very dedicated and I'm glad she has you.

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GothicGremlin

Hi Martin --

Your mom is so lucky to have you. From everything you've written, you've taken excellent care of your mom.

Be sure to give yourself space and be extra nice to yourself.

LicketyGlitz

Oh, man, Martin, this is the toughest part. I'm chiming in to tell you my mother lingered much longer than hospice thought she would too. They called it a "death plateau" and said it was not uncommon for dementia people at the end of their lives to kind of stall out. She finally passed while I was sitting next to her, eating a taco and watching a movie. As my sister said later, it wasn't one of those big Hollywood moments you think it's going to be.

In some ways she made it easier on us by staying so much longer than she should have. By the time she did died, of course we were heartbroken, but also truly relieved which had my sister and I doubting how good of kids we could be if we were happy she was finally gone. Well, happy is not exactly the right word, but when it happens for your mom you might feel a little bit the same.

I'm hoping for a peaceful passing when she's finally ready, for all of you.

Martin Robbins

Thanks, Hoot.  I'm grateful for your prayers.

Martin Robbins

Thank you, Susan.  Hugs always help.

Martin Robbins

Your words are so kind, Victoria, and I am grateful.

Martin Robbins

Thank you, Gremlin.  Your words are nice to read.  No one else has ever conveyed any appreciation, which makes this even harder.

Martin Robbins

Thank you for relating your experience, Glitz.  Although hospice nurses repeatedly tell me she's comfortable, I am indeed very worried for her as long as this keeps up.