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I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......

Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?

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The realization that you can't teach an old dog new tricks and the associated pain of having to stay calm when the same request (like brushing teeth) needs repetitive reminding and gentle guiding with more and more resistance in return. When does one give up? I love that guy - my husband (due to stroke and old age my old baby now) - how can I allow myself to look the other way?
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gdaughter Jan 2020
I feel for you. Slightly different spin is my mother who was the dental poster adult she was so meticulous and OCD about brushing/flossing...and somewhere along the way, though still functioning independently with numerous ADL's, she has obviously stopping brushing and flossing as the DDS, who happens to annoyingly be our next door neighbor, and whose own mother resides in a nursing home with dementia and stroke effects, found 13 cavities in the past week. I looked up articles and have learned that 1. It is a common issue 2. it is often neglected 3. it is time consuming 4. it takes immense patience. obviously very hard to stand by as you know decay could take over and cause so many other health issues. There doesn't seem to be any good answers. This DDS rejected the idea of an electric/battery powered brush as it's hard for her to remember the OLD method, let alone get used to something new. He also poo pooed her coming in more frequently for cleanings...which I am going to disagree with. If someone goes in more often it could certainly catch decay and problems before they advance to a worse state, don't you think? It's just logical. Thus far mom apparently (dad is taking her) has been cooperative with the process, so for as long as it can go on, I think that's the way we're going, but I am so open to hearing from others on how they deal with this important issue. We have to take comfort in knowing we have tried and done all we can. Is your guy at home? Is there a home care DDS that makes home visits? I read that fruit salad of all things may help clear nasty bacteria away, and so might fruits/vegetables...so the other day I cut up pieces of celery, radishes...and yes, mom dove in...and sitting beside the container on the counter was a bottle of soda....
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The loss of freedom. Having to be close by at all times and never getting a break.
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I have to agree with Marialake, the original poster. Mom is ABOUT MOM. Was she always like this? Probably. But she was more 'silent' about it because her and dad "understood each other" and got on well for 67 years. BTW, the man was brilliant, a saint in my eyes, a lighted soul who always helped and saw the best in others. He was truly exceptional.
So yeah. It's about her. Maybe at 91 I think it should be? I mean it's hard to think of others when you are close to the end of your life and alone, I guess. I try to put myself in her shoes. I am her "lifeline" literally sometimes to social interaction.

As far as the loss of freedom? That is probably right up there #1 with the sense of entitlement she has.

I know Ash has posted I am "destroying my family" by enabling mom and not stopping her and putting my foot down, but as an only child, it's easier said than done when I know for a fact that woman is alone in the world. The truly is. She relied on my dad so much that I bite off as much as I can chew, and sometimes more; and swallow.
I love her dearly, - we all only get one mom. There are days I wish I could be left alone. Days I wish I could take a vacation. Just days where I want to not be responsible. But in the future, I know those days will come.
And no, I don't feel I am destroying myself or my family. I know inherently that my love for her and my family is the glue. I'm the lynchpin of this family. I bitch a lot, and I come here to do it (thank you for listening) but there isn't much I would change in terms of forcing life changes on her at 91 (at least while she is coherent)...... still, yes I MISS MY FREEDOM.... but there is also a song... I can't remember the artist or the name of it, but it goes "Freedom is another word for nothing left to lose....."
They need us and there has to be something good in that.
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LVKDRA Aug 2018
Me and Bobbie McGee, I love that song too. I think it was the same guy who sang Mr Bojangles. But I wonder if it was written by Carole King - I should look it up.
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I care for both grandparents and my grandmother is so self centered its sickening. don't get me wrong i love her but she doesn't care who she puts out as long as she gets what she wants. my grandfather has a few years on her and he will be 80 next year but she acts like HE couldn't possibly be sick or sore or tired. right now she is in a nursing home. she can't walk much and definitely cannot use the toilet on her own but she refuses to stay there. She doesn't care that I will be alone caring for her 24/7...she just wants to got home. it is ridiculous!
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Not being able to "fix" what is wrong.
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Health4him May 2019
Oh, you are so right. I feel like I’m spinning my wheels and just going through all the motions to keep him comfortable and I want so badly to make him better, but instead he gets worse. I guess sometimes I hope for a miracle. There simply is no cure for Parkinsons and dementia. I’ve got to keep reminding myself of that. My blessings to all of you going through this dilemma.

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My mother looking to me to take most of the responsibility and making excuses for my siblings who supposedly cannot assume even some of the responsibility. Living too far away, cannot afford to take time off from work, unreliable transportation. I live an hours drive away, I take unpaid time off from work, but I do have my own car. BINGO I win the prize as the official caregiver due to being the most reliable convenience, at least in your mind, mom. Do you not realize that as you scramble to find people to help you in your own home, siblings are not stepping up to help and I am further distancing myself from being your chosen one.
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In my case it is not the difficulties with mom, though naturally there are times I would love to just get the heck out. But those trips are to the grocery store.

What really makes this the most difficult is the attitude of other family members and the denial of the disease. Though denial keeps them comforted since they the do not see a reason to visit of assist in ways that would be helpful to me. For crying out loud, do not take mom to lunch, fill her up with sugar immediately after bring her home for me to handle the sundowning which is extremely difficult when that sugar crash happens.
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Side effects of the medications, and it is very difficult for me to have my husband's health providers to understand it's not the symptoms of dementia, but side effects of medications.
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No end insight
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Corgimama May 2020
Yes, with the virus and my elderly friend being 86 and having heart and lung issues we have to stay quarantined. I also have to watch her like a hawk because she wants to get out shop and wander around the grocery store. She actually did lie to me a couple of times and went out shopping and came home with stuff. She says she's not worried about getting it but for me, I can't handle that. I lost my husband to cancer in December and I don't think I could handle losing her. I am here at home with her 24/7 with, as you say, no end in sight.
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I agree with Jeanne.. If I could fix Mom with that magic pill, I could have my old Mom back..She may move slower but I could handle that...
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It's a thankless job in which everyone thinks it's your job and don't need their help even though I asked for help. Being treated as a drudge and not someone who is trying to help him. Watching my life go by. Dreams dying because I'm no longer adventurous but filled with fear. I think the verbal and physical abuse have made me so fearful of facing people. Yesterday, I parked my car and was so scared of going into the salon to ASK if I can have a haircut. I had to pep talk myself to do it. For a haircut! It's so insidious the effects of verbal abuse and to constantly watch the feet and hands in case he decides to hurt me. It's only 2 days of my weekend shifts and I can't wait to go back to work.
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Gigi4home Sep 2021
Please get help for yourself. It’s not selfish. There is life to enjoy.
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I want to add to this discussion. I need to, I am so depressed today! I hate my mother's company now and I used to love her company. She was always crazy, obsessive and self centered, but now she is all that with not a second of love, openness, awareness of me. She treats me like crap and expects me to at her beck and call no matter what. She is not mentally deranged with Alz or even dementia: but old age is like a caved in room for her, which is terrifying and is all she can see. I can't save her, talk to her, or add a thing to her existence. My life feels like it has no purpose and she is only an obstacle to it going anywhere. This effect of being with her is so negative on me: I NEVER was like this in my life before she came here.
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What is the one thing that bothers you the most about caregiving?

My answer: It's like applying for a job where one has zero professional training, yet you are hired with no pay and no set hours.
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MoonWishing1980 Jun 2022
This!! For years now I've been searching for the words to explain it to people that just don't know you know? This is the most relatable, well written, truthful, raw comment I think I've ever encountered. I'm crying (geez. When am I not?) But it's somewhere in between crying out of pure exhaustion and grief and a strange sense of almost comfort and relief that somebody else not only sympathizes but empathizes almost verbatim how I feel. Thank you freqflyer. Thank you so very much from 8 years in the future!
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I'm afraid I haven't found what's going to be the worst yet. I think the lyrics are from the Janis Joplin song "Me and Bobby McGee".
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"What bother's me the most with caregiving"?

No longer knowing my mom (or her knowing me)

Watching her end of life happening... so not pleasant

Witnessing things I could never have imagined prior to this.

Lack of Life.

Missing my son

Missing my job

Missing ME!

Guess one day that will come back to me, and then, I will miss my mom?

Crud

Vicious circle.
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I missed my freedom. I was angered by my brother in laws who never came to see their mother (well, one came once to borrow money and the other showed up drunk and tried to fight with my husband), but who ravaged her condo for any thing of value when she came to live with us and then accused us of spending to much money for her care (around $3000/mo mostly on caregivers who gave me a break twice a week so I could run errands). My job, however, is over now. My MIL passed away 10 days ago, but the last days of her care, watching her "actively die" were traumatizing for me. Now I miss her. I am glad to have my freedom back, but am still angry at the brother in laws for their heartless treatment of a good,kind woman.
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Only one thing? I guess it would be boredom. (Gosh, this was a boring answer.)
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Reply to JessieBelle
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I changed my mind. The worst thing is to watch your parents decompose physically and mentally. It is a desperate feel at first and we try to stop it from happening. One day we realize that it is going to happen. We can't stop it. We can only make it more comfortable.
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Dexieboy Oct 2018
I have recently come to the same realization. I cannot “fix” mom and make her revert to the strong, independent mother I knew. One day at a time. I can only do what I can do today to make her comfortable and provide support measures. Tomorrow she may need different things for her comfort and support.
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Feeling under appreciated. A thank you or a pat on the back once in a while, would go a long way.
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Feeling like there is no honorable way out.
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I love my Dad with all my heart. He broke his hip in January and has been here since leaving the nursing home after 1 week. He is blind and has bouts of confusion which are getting worse. My Mom is still in her home about a mile away. Physically she is okay but her dementia is far worse than my Dad's. I am the oldest of 5 kids, one is out of state and one is an alcoholic who can't take care of herself, much less my parents. So between my brother, sister and I, we take care of the two. My Mom swears that I have taken him away from her. She leaves nasty messages on my phone accusing me of spending his money and other things I wouldn't post. I left my RN job to take care of them. I am thankful to have the help of my husband and my sister. I also hired a friend to come in 2 days per week to give me a 2 hour break to do as I please. Sadly I will probably use that time to clean up the house and yard. I guess the thing that bothers me the most is the loss of freedom. I also get tired of the full urinals and not making it to the commode in time. Yesterday he slept for 22 hours and woke up at 8 PM. So now, in the middle of the night I am up, trying to keep him calm. I cannot trust him not to try and get up and fall again. I thought he was dying today and it really scared me. Thanks for a place to vent.
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Dexieboy Dec 2018
Sometimes we need to vent more than anything else, WeNEED to get this stuff OUT of our systems from time to time.
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I know what bookluvr is saying. I often feel guilty for thinking of myself so that hardly ever happens. I also get so angry at my siblings for never helping out even though I have asked several times for assistance. Then when I snap at them they say I should not do everything myself - would like to just smack them alongside their heads to see if they have any marbles that rattle around there. I love my parents and only want the best for them but sometimes I get so frustrated.
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Dealing with Mom's memory loss is the hardest thing for me. One big thing is that she doesn't remember agreeing to come live with me nor many other things that we had past talked about. It's not that she dislikes it here, but that she doesn't understand how she got here and, when I explain it, it doesn't make sense to her in any way.
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Dexieboy Dec 2018
My Alz mother would be the same way, and it is SO difficult to keep trying to explain their situation to them in 100s of ways so they might understand, but our efforts always prove futile. Sad.
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The quote : "A sucker is born everyday" comes to mind! And I'm the "sucker". Since 5 of my 6 siblings don't give a crap to call or visit Mom and I'm here taking care of their Mother too..
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Reply to assandache7
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I definately agree with the 'No end in sight' post. The thing that bothers me most is siblings who won't help, but want to critique your caregiving skills, and saying "I told you so" when you vent your frustrations about what mom and dad are doing and how much work it is. And when they say, "you should have left them in the Nursing Home". Also, pretty much no respite care, and knowing I can't go on vacation this year. I'm sorry if that sounded self-serving.
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Dexieboy Dec 2018
No, you do NOT sound self-serving, Dear, just the opposite. We all need to vent and we all need moments to be able to exhale.
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It wil get worse, not better....and I deny help for my own self....hard to handle..
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Wondermomma, that doesn't sound self-serving. Everyone deserves their own life. Many caregivers give so much time and effort and ask for so little time. And, in the case of a vacation, it's not even an ongoing respite but just one special occasion, basically -- just one little bit compared to all the caregiving.

So, no, you don't sound self-serving and I had to say this twice just to shove it into your head. :-)
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Dexieboy Dec 2018
Amen to what abc1234567890 said!
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The one thing that bothers me about caregiving...I wish my mom was healthy, not on medication and not so frail so she wouldn't need me to be a caregiver. I wish that should would never had lung cancer, COPD, taken meds that made her weak. I wish that she could breath just fine without oxygen. I wish she was like she was 20+ years ago when she could do anything she wanted.
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Bothers me the most - getting Mom moving and socializing and doing stuff. Helping her rebuild her life (after death of her spouse then stroke) when she does nothing to contribute to the rebuilding. Now that she has moved out of my house and into assisted living, I find it easier to let this go on a day to day basis, since it isn't right in front of me 24/7. But it still bothers me.
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I agree! Wonder momma you don't sound self serving.. We all would love a vacation..
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