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M
Martz06 Asked April 2020

It’s hard to watch your parent decline, isn’t it?

My father's been getting more confused lately. He sees something on Instagram and doesn’t get the story right. Apparently a good friend of ours left his family and went to live in Boston to study at the university during this time of the virus. Oh and he told a friend his daughter and her husband were moving to Texas (he got the couple mixed up) and her father said well they didn’t tell me anything about it!! 😁 I don’t know whether to laugh or cry. I guess I shouldn’t worry too much about what people think. I’m sure they will eventually realize he has dementia. Maybe it’s just difficult to accept the diagnosis myself.

Papillionmom May 2020
A deacon (who took care of her mother-in-law) once said to me “No one will ever understand the anger and frustration of a caregiver”.

For sure. It’s an emotional roller coaster.
gdaughter May 2020
except another caregiver:-)
Bokcare May 2020
Watching your parent decline is the hardest thing ever. I have been my mother’s sole caregiver since my Dad died 15 years ago. Her health has been steadily declining for the last 5 years. She turned 90 last week. She has many physical ailments, the worse being RA, which affects any and every part of the body at any time, so she always has something wrong. She has good days and bad days, and is showing short term memory loss and confusion at times. I work a full time job and live with her. Before the pandemic, I hated weekends, and couldn’t wait to run out the door on Monday mornings. Now it’s just one months long weekend, watching her decline and trying to explain meds and nebulizer treatments to her, as she questions my every move. I have severe caregiver burnout and compassion fatigue. What once was a loving, best friend relationship has turned into a barely speaking relationship, between a mother (me) and a child (her). I guiltily sometimes pray that God takes her in her sleep, and it helps to feel other caregivers sometimes also feel this way. This site is wonderful for helping us caregivers validate all our conflicting feelings during this very hard time of our lives. Please stay strong - as strong as you can - and it helps to have friends or a therapist to whom you can vent.
Bunny7415 May 2020
OMG... Thank you! You just expressed what I've been feeling as well. We are in the exact same predicament, sole caregiver, previously waiting on Mondays was on point! I love my mom but the burden is quite overwhelming! Thank you for expressing & putting it into words for me. I feel some kind of relief & less guilty for what I have been feeling!

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NeedHelpWithMom Apr 2020
I am so very sorry. Yes, it is hard to watch loved one’s health decline. It’s very sad that so many diseases exists. Too bad that all of us don’t just die in our sleep.
Geaton777 Apr 2020
I have 2 aunts that I manage care for: ages 98 and 101. I often pray that God would take them in their sleep.
JoAnn29 Apr 2020
Yes it very hard. Within a few years my Mom went from the strong person she was to a child. Her facial expressions were a childs. I was the adult now she was the child. My husband said she was afraid of me. Ex: DH asked her if she wanted to go outside, she said "I don't know if she will let me". I really think she saw me as her Mother. I had gotten to the point I didn't ask because it would be a "no". So I told her. "Time for a bath".
NeedHelpWithMom Apr 2020
JoAnn,

So true. They become as helpless as very young children.
HardSeason May 2020
Extremely hard.
My family tree has longevity into the late 90s on both sides, so I always assumed I'd enjoy relating to my parents into my 70s like my parents and grandparents did. My mom is completely gone with dementia while still physically relatively healthy at age 81. Nothing left of the hero/best friend she was. My dear Dad is showing all the same symptoms, just a few years behind at 83. They live with me, so I see it 24/7.
My daughter's m-i-l (and my close friend) recently found cancer and passed within 7 months at the age of 72. As hard as that was for everyone, I pray every day that I would die of a physical ailment instead of losing my mind, forcing my children to witness this "disappearance" while having to try to keep my body alive for years.

kbuser Apr 2020
It is very hard. Just today I brought out my mom's treasured metal recipe box full of her favorite cookie recipes and she had no recollection of it whatsoever. We can only take one day at a time and pray for grace to be there for them.

MelissaPA2AZ May 2020
Indeed it is. You will find that sense of humor about it all will serve you well. In some professions it is called “gallows humor.” It is a self-protective measure for your spirit. People with shared ugly experiences can understand the humor, but those on the outside may think it in poor taste. Of course, we are never laughing at or making fun of the person, just the situation (and never in front of the person). My sister and I have shared many laughs on our journey with my parents’ dementia. At times it is the only thing that has kept us sane. So yes, while it is sad and difficult, there are moments when we have to laugh. Wishing you strength and a continued ability to laugh as you walk this journey.
jacobsonbob May 2020
The comment about "gallows humor" reminded me of conversation I had back when I was in graduate school (middle to late 1970s). I rented a room in a house, and a neighboring tenant was going to school after having been a medic in Viet Nam for a few years. He made a comment that he like the show MASH so much because, as he put it, this was EXACTLY what life was like for him, specifically referring to the humor when confronted with casualties--the medical staff joked while they were working to reduce tension and keep their sanity under stressful circumstances. Long term caregiving, particularly for a person having advanced dementia, certainly qualifies as a stressful circumstance even if there are no bullets or grenades.
Nanababies May 2020
I have watched my mom go from a strong matriarch of our family to a frail little child needing help with daily living. Now that I can’t see her because of this COVID 19 she is in memory care scared to death. Even though she’s been in memory care since August, I was with her every day from noon until she went to sleep. It breaks my heart that she feels abandoned and alone. My mom gave her life to care for her family and now when she needs us most we can’t be there. I do speak with her daily but she doesn’t remember from day to day. She is 86 years old this month and aside from the dementia and Parkinson’s she’s extremely healthy. She never took a pill until she was 85! It’s so hard to see them get worse by the day with this awful disease. Keep him home as long as you can and thank a God for every day you can still hug him!
gdaughter May 2020
I hope that the country learns from this pandemic insanity and we never have this happen again, with the separation of those in care from immediate family. I'm sure in part it was due to a lack of supplies and those being filtered to hospital workers...but it's just wrong to not allow people the comfort of each other.
mommyskids May 2020
best advice i got: sometimes you just go into the bathroom and cry, and then you carry on
gdaughter May 2020
I am too tired to cry. I just look forward to abandoning ship, and driving the 90 minutes to Wegman's to get chocolate cake and a poke bowl :-). I only do it 2x a year.
Sunnygirl1 Apr 2020
Yes, it's difficult. I've noticed that my dad has lost his formerly strong posture. He seems more feeble and that's not my dad. He turned 83 TODAY and I still think of him as a very tall, strong man who carried me easily on his shoulders as a child, but, he's getting weaker. That is clear. My mom has also gotten very poor posture now. Her gait is not good. They stay pretty active, doing house and yard work, but, it's still quite obvious how changed they are now. I hope they live a longer life, but, I hope their mind survives as well as their body.

My cousin is only 68, but, is end stage dementia, on hospice and wasting away to about 75 pounds. That is perhaps the most difficult thing I've had to witness. Six years of decline took her there.

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