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

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

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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.

Alzheimer's & Dementia Cognitive Decline Dementia Behaviors

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A difficult journey. Heart wrenching and sad. Please check

Dementia Careblazers. Dr. Natali Edmonds , she has an incredible amount of free educational utube videos on Dementia and Alzheimer's. I could not do this without her online helpful guidance.

https://www.youtube.com/results?search_query=dr.+natali+edmonds+channel

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It is hard, that's for sure! Two years ago, (March 2018) I quit my full-time work-from-home job of 11 years to care for my mom who had Alzheimer's Disease - because dad could no longer care for her as her needs were more than he could handle himself. I "moved" in with them but still had my apartment and took a 2-hour break in the mornings and a 4-hour break in the afternoons. Mom with her AD did revert to basically a toddler stage - I fed her, dressed her (thankfully had a caregiver to provide baths). I also cooked and cleaned for both parents. Mom had a couple of strokes in June 2019 and passed away under Hospice at home in her sleep.

I immediately moved back to my apartment but still check in on dad every day. I had to find a job so now I'm a part-time cashier at a grocery store - only working until noon - then still do shopping, cooking, cleaning for dad. He has Mild Cognitive Impairment but I swear he is more of a challenge for me emotionally than my mom was! I think because he has "regressed" to a "teenage" state - kind of the mentality that he "knows" everything. Of his own volition, he stopped driving then sold his car, so I don't have that worry. He fell in August 2019 and now is fearful of falling again - he didn't break any bones - but now he refuses to use his walker and uses his wheelchair most of the time. He is increasingly more forgetful - I think this is where most of my frustration comes from - mom simply got to the point where she didn't remember anything and never argued with me or insisted I say "how high" when "jump" was commanded.

Anyhoo, it is hard to watch the decline. Thankfully, I don't have to move in with dad *yet*. I, too, hope he dies in his sleep so I don't have to do that. I feel guilty that I get soooo frustrated with him - but I know that's "normal" so try not to beat myself up too much. But I'm so exhausted - working during this pandemic, taking care of dad - by the time I get home, I have no energy left to do much!

Sorry for hijacking your thread - and thanks for letting me vent. :o)

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Yes, it is hard.. dementia, is very hard.

Hope he doesn't drive any more. If he mistakes the gas pedal for the brake, can be very dangerous. My friend got in an accident with a woman who thought she was applying the brake.. Oops...

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Martz06: As your father is able to log on to Instagram, that is really good in and of itself.

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I feel horrible. My mother gets so angry at me and our conversation seems to be twisted into a "right" or "wrong" by her. We'll be talking about something and then it morphs into something that we weren't talking about or I did not say. She thinks I thinks she's crazy, and I don't, but I am very gravely concerned there is deterioration. I can't handle it. We have gone for her twice to get a Dementia test at the memory loss center and she comes out with 28/30, but her confusion with not remembering where things are, and her chaotic paperwork that never gets straightened up and only confuses her more have become worse. She gets very angry at injustices, which I understand, but the anger seems way more than AT&T being jerks (and they can be jerks.). I don't know how to handle this. I try and talk and reason with her but it is exhausting and I see even she doesn't "get" it. She did have 3 mild (if that makes sense) strokes 6.5 years ago and there is a bit of aphasia, but I see more of a decline lately. I'm scared. I'm an only adult child. I don't need harsh words or criticism, I need understanding.

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As caregivers we. need to take care of ourselves. I really did not understand what was in for when my mom moved in with me when she could not drive any more. We had about 4 years where it was a good situation. Then in year 5 of this, there would be medical emergencies, then she developed macular degeneration. Life was a roller coaster ride from doctor appointments, food prep and the fact that she was very much alone. I continued to work 6 hours a day and exercise. I was able to hire help for 3 hours a day for her ADL and companionship. I hired help to clean the house once very three weeks. I was able to get a POA and manage the finances. I worried about money. The stress really got to me.

The fact that I am an only child and divorced did not help. She was with me for 10 years. It has been 3 months since she passed away. She had a good live and I am glad I was there for her but I would have put her in a nursing home two years earlier. I do not like nursing homes and she had been in rehab twice and I brought her home each time. I am physically and emotionally exhausted. My advice is to get as much help as you can. Find some pleasure and peace for yourself each day.
It is a tough road.

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It’s normal for you to feel both emotions. It’s definitely hard to watch my mom decline before my eyes. I cry a lot of times bc it’s so heartbreaking, however it’s out of my control, out of her control and there’s nothing that can be done about a progressive brain disease but cope on a daily basis and make the best out of it! A lot of tears but laughter and smiles go far.

My mom was a detailed, meticulous seamstress, down to sewing the last bead on a 1,000 bead bridal dress...now she folds tissues into perfect little squares, even irons it out with her fingers...I thought this was so strange at first before I’ve read about others that do it also with Dementia.

When people say to me your single & no kids, how hard can your life be?? I correct them quickly and say I have an 83 year child, that wakes up every 2 hours throughout the night every night and will never be potty trained, repeats things and asks why? all the time and needs to play and keep busy ALL day long. Sole caregiver here!

So many little things I pick up that are sad for me but I try not to make a big deal in front of her...if it’s not hurting her or anyone else let it go.

We were watching the Golden Girls one morning and she caught some words such as coffee, she turned to to me and said “please go make some coffee for them, they are coming over soon” I replied “sure no problem mom”...bc if I start mentioning that’s it’s only a TV show, she looks at me puzzled, white lies are now okay! I mentioned on another post, I had music on, Queen, she hears Radio Goo Radio Gaga and starts cracking up...and she was repeating it, I just had to laugh with her. She still bursts out a laugh when she farts too!

I do what I do bc she’s my heart & soul. If the roles were reversed she would have been taking care of me too. My mom has Vascular Dementia from prior Strokes.

God bless you & stay safe.

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If you love the sick patient and they have been good and kind and loving to you, of course you will get depressed and upset - only normal. If you can put up with the dementia, that is fine but not everyone can handle it. I know I could not. If it is laughable and you can ignore it fine - but know when something has to give so this person does not destroy you with the inappropriate behavior. Prepare yourself when you will act and under what circumstances. You are only human and should not let this destroy YOU.

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best advice i got: sometimes you just go into the bathroom and cry, and then you carry on

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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.

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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.

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except another caregiver:-)

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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.

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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!

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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.

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Accepting is one of the most difficult but important parts of any diagnosis.
I think the sooner you accept the easier the whole journey becomes.
One reason, as soon as you accept it is easier to say the words out loud and that lets you tell your family and friends what is happening. That takes a lot of the burden off you and in some respects your loved one that has this diagnosis. You no longer have to make excuses, once you are more relaxed your loved one becomes more at ease. Less stress, less agitation
It is hard to watch anyone decline. A parent, a spouse, a child, a friend.

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You have some great responses on quite a few postings.

You have a gift, writing, making people understand from a different perspective.

When you write a book please let us know 😊

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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.

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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.

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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.

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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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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.

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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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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".

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JoAnn,

So true. They become as helpless as very young children.

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Martz, yes...it's a very large club to which no one wants to be a member. But this is a good point for you to assess whether he/you are as prepared as you can be to make this journey as smooth as possible. Does he have a solid person/s assigned as his durable PoA? Health care Directive? Living Will? Last will? Do you know where all his important and sensitive paperwork is so you can help him manage his affairs? Do you have protections for his finances/assets in place to prevent financial abuse (which is a very real danger)? If the answer to this is "no", please find an experience elder law attorney who has experience in estate planning and spend the money for a consult (some will do it for free). It is the best investment your dad could make right now. If he ever needs outside caregiving help, it is very expensive and this must be planned for. I wish you happy times with your dad and peace in both your hearts as you help him make the best of the rest of his life.

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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.

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I have 2 aunts that I manage care for: ages 98 and 101. I often pray that God would take them in their sleep.

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

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