Decision Time: To Live or Not to Live

harshedbuzz · June 29

@JulietteBee

Poor you. It makes for a long day.

Will the Watchman device allow her to discontinue blood thinners at some point? That could spare you both the complications around bleeds in the late stages when falls become a constant risk.

HB

JulietteBee · June 29

I am not one to pity myself and say, "Poor me." Today is the exception. Poor me, indeed. I hurt literally from head to toe.

Surgery is finally over & I will get to see her & assess her for myself, at/around 5P.

Yes, the heart has an appendage where blood normally pools. The pooling in that area is what increases a patient's risk for forming clots and having strokes. Until that area is safely sealed off, blood thinners tend to be needed for life.

With the Watchman in place, mom will be able to get off her blood thinners in 3-6 months; just in time for when she starts stumbling and becomes a major fall risk.💔

Daisy4U · July 1

Pray everything went well @JulietteBee. I've been thinking of you.

A short personal update. My mother based away in the early hours yesterday. After a sudden, rapid decline on weekend. We spent the day in hospital emergency on Sunday, she was placed in palliative care on Sunday/Monday, and breathed her last Tuesday. I slept on a camp cot in her room Monday night, listening to her laboured breathing and at 4:15am was led to get up, sit by her, and offer soothing words of peace and safety. She was gone by 4:25am Her struggle is over. Feeling numb. Forgive me if there is some radio silence. Know that I appreciate all of you and the community on this board.

jen ht · July 1

https://alzconnected.org/discussion/comment/276304#Comment_276304

Oh @Daisy4U ... our hands in yours. I am so sorry for your loss. Accompanying you in spirit.

@JulietteBee continuing to send prayers and supportive, warm wishes your way.

💜🙏🫂

SusanB-dil · July 1

@Daisy4U - I am so sorry to hear of your loss. Sudden or not, expected or not, it does hurt. She was blessed to have your care and love.

harshedbuzz · July 1

@Daisy4U

I am sorry to hear of the loss of your dear mother. I wish you strength and peace as you go forward.

HB

psg712 · July 2

https://alzconnected.org/discussion/comment/276304#Comment_276304

So sorry to hear this Daisy. I'm glad you were by her side. Peace and comfort to you and your family. As I've recently lost my mom, I'm glad to extend any support that I can to you.

psg712 · July 2

JulietteBee, prayers for you and your mom. Update us when you can.

ARIL · July 2

@Daisy4U So sorry about your loss. You did well by your mom. She was lucky to have you.

@JulietteBee You have been on my mind and heart all week.

JulietteBee · July 2

https://alzconnected.org/discussion/comment/276304#Comment_276304

Dear Daisy,

Thank you for keeping my mom and me in your thoughts. Thankfully, mom had the surgery and has experienced no noticeable complications.

Her mentation certainly took a blow due to her uti and subsequent admission. She is not back to baseline in that regard and I do believe anesthesia also played a role.

On the other hand, I am extremely saddened to hear about your mom's death. As I am often reminded to find a positive life lesson to learn from every experience, I would say the life lesson you learned is to ALWAYS follow the prompting of that still small voice. I am delighted to know that you were able to be at your mom's bedside and was able to calm her during her storm.

I pray God blesses and keeps you, and may His face shine upon you, and give you peace as you trudge the horrible journey called "Grief."

🫂🙏🏽🫂

JulietteBee · July 2

@jen ht, @psg712 , @ARIL

Thank you all so much for your thoughts, well wishes, and prayers.

Mom successfully came through surgery. Sadly, the precipitating factor that caused her admission, robbed her of more cognition, which is yet to be restored. I hope anesthesia is playing a role and once it is completely out of her system, "mom" will re-emerge.

She came back loud and aggressive. So out of character that the other members of my household has commented that she came back as a different person than who we lived with as recently as last Thursday.

She has an appointment with her pcp today which I am eager for. Additionally, the hospital's case manager got her approved for in-home care for 1 month. Her PCP's case manager is applying for her to tap into additional insurance benefits which could take me through the end of the year, getting someone for 4 hours/day, 2-3 days per week.

The Lord knows I need help. Last night mom took TWO showers in the space of an hour. She took a 20 minute shower and apparently forgot that she had done so, and 30 minutes later was back in the shower.

To top it off, this morning she was seen with her bed sheets bundled up and heading to the laundry room. She insisted she did not wet them, but my loading the washing machine for her, proved otherwise.

Daisy4U · July 2

Thank you so much everyone for you kind messages of support. They are greatly treasured and mean so much at this difficult season.

harshedbuzz · July 4

@JulietteBee

How are you and your dear mom doing?

HB

JulietteBee · July 5

@harshedbuzz, my life and my days have gotten significantly more difficult than how it was prior to last week Friday.

Mom is having lengthy conversations with us in regards to her mixed up understanding. In one such convo, I told her the hospital's case manager arranged for her to get a visiting nurse. She went on for 10 minutes saying we could all clean the house ourselves rather than have a nurse come out.

She was asked by the physical therapist why she was in the hospital last week. She paused, held down her head, and said she cannot remember why. That is alarming to me.

In encouraging her to wear the pull-ups, to avoid accidents, she angrily stated she has never peed on herself. In gently reminding her, she says, "Of course you remember everything." I left het room and sent her favorite person, my husband, to remind & convince her.

Our adult child has stated that gma is a different person and I must agree. I miss my mom! The person that is here with me is a sick, elderly lady, not my mom.💔

harshedbuzz · July 5

@JulietteBee

I am sorry to hear things are more difficult.

As awful as it is to live with and care for a woman who is the antithesis of your own mother, it can serve to remind you to use best practices in communicating. Rule one of Dementia Fight Club is to never try to reason with a person who has a broken reasoner. Trying to "gently" encourage her to wear an incontinence garment is reasoning. I, too, have gone there. I'm ashamed to admit how often. It's hard when the person with whom you are dealing looks and sounds like the person your LO used to be.

Some people have introduced Depends by removing all other underwear. That worked for my dad which I did not anticipate. My aunt explained them to her sister as "new paper panties" to reduce laundry" as her sister had a balky septic system and had to be prudent with laundry at home.

Your situation reminds me of my friend who cared for her mom through dementia and breast cancer. Her DH was also the one in the house who could lay down the law with mom; alas he was only in town 1 week each month and some weekends.

We used to meet for lunch and compare notes when we were both in the thick of it. She, too, held the "not my mom conviction". She once told me that "the elderly lady who lives with me is a nice enough little old lady— but not my mom". It's so sad.

HB

JulietteBee · July 6

@harshedbuzz

It is in fact very sad. Thank you for sharing your friend's view. I realize that I am not alone in feeling that way. At the time of her admission, I felt like I rushed my mom to the ER and stayed till 4A to ensure she was situated for the night. Upon her discharge, I sadly feel like I brought home a patient.

She was dressed for church yesterday. I was not well so I stayed home. My husband was going and she was riding with him. I suggested she go to the bathroom before leaving. "I don't need to use the bathroom" I then suggested she wear the pantyliner. (That word does not offend her as much as the word, diaper.) She asked me "Why?" I told her she was going to have a full day at church and I didn't want her to have an accident or embarrass herself. She shot back, "I have never peed myself before."

I get it. I should not have reminded her of her previous cases of incontinence, neither should I have offered a reason for the suggestion I made.

My understanding the rule, leaves me not knowing how to apply it in that situation, however. I was terrified of her peeing on my husband's car seat or the church's pew.

She never did change into one, but thankfully she did not have an accident. Without me reminding her of her past accidents, she believes I am making things up and she has stated as much.

While in the hospital, this was not a problem, as someone helped her to get dressed. At home, she dresses herself. I like the idea of switching out all panties, but she knows I just bought her a pack of 10, two weeks ago.

psg712 · July 7

My heart goes out to you. I think this is the hardest stage, when she is trying so hard to hold on to adult agency and independence but her judgment is impaired and she needs more and more help. It's soooo hard not to reason with her ... especially if she was the voice of reason in your life in the past. And she remembers some of that, knows you are her child and won't take directions from you!

My mom also accepted directions from my DH more willingly than from me. Was it her belief in male authority or just that I was her child? Hard to say. But sometimes he could say the same things that I had said, and she'd listen to him. It's a blessing to have a partner in the struggle. Sadly, as mom lost more cognitive function, she became "easier" to manage 😢

zabka · July 8

Its very hard stage.. My mom does this also and seems to also take direction from my husband rather than myself.

JulietteBee · July 8

@psg712, thank you so much for understanding and being able to relate to what I am experiencing!

I am realizing the general consensus is that for mom to become less resistant, argumentative, and demanding of unrealistic amounts of independence, requires that she suffers further decline.

What a wretched disease! Relief for us, family caretakers, will come only with the pwd losing more and more of their former self.

I am indeed blessed to have my husband being 100% on board with having mom live out her final weeks, months, or years, here at home, with us.💙 I would never have asked him, so, I am grateful that it had been his plan ever since my dad died 14 years ago, before dementia/alzheimers was ever in the equation.

JulietteBee · July 8

@zabka, it indeed is a very difficult stage.

I wish there was an explanation as to why our parents apparently respect our spouses more than they respect us.💔

Wednesday · July 8

My MIL will respect me more than my husband. When I tell her it's time for her shower, she generally acts surprised but comes along. If he tells her…it's a fight. "I'm too weak." "I don't smell bad." "I'll do it tomorrow." If she pushes back to me at all, I just say no, it's time now, and we can't put it off. And it gets done.

So now I'm the one who always instigates the shower convo. I'm the one who brings the granny-sitter into the house on Saturday mornings and tells her that no, she can't sit in the car in July while we get groceries 😄, and Miss K. will be staying to help her while we're gone . It's like she counts on her son to listen to a mother's authority but I'm a different kettle of fish.

JulietteBee · July 9

@Wednesday, congrats! You are obviously the authoritative figure who she respects as such. Your poor husband is, and will always be, viewed as a child. In her mind, he has no clue.

That is EXACTLY how my mom acts towards me. Everything that proceeds our of my mouth, causes pushback and a fight. My husband gets the tears or the willing submission. I am so over it.

Decision Time: To Live or Not to Live

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