I just need to vent.

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I truly try to look for the humor in caring for my mom, but I have to admit that today I am finding nothing but the feeling of being alone.

My mom thinks she remembers everything without a problem and denies there is anything wrong with her other than her permanent broken leg. My mom wants to tell me what to do and my hop to it even though it could cause her to get hurt. Today at the doctor's office she even said phooey to the Alzheimer's and that I just needed to do what she said. Mom now has bronchitis on top of everything.

My husband's mother died from vascular dementia but he was not her caregiver and only saw her a couple of times a month. So I get to hear about his few experiences with her, but he gives me no emotional support. He has trouble even connecting the situation in his own head that here is an adult that should behave better and he can't get why she does what she does.

Then my oldest sister that lives in town, wants to be the controlling boss but doesn't want to sit with my mom so my husband and I can have time alone. If she does, she keeps calling wanting to know how long it will be before we return. We even go when my mom takes her nap, so my sister doesn't have to lift a finger.

We are planning one last cruise for my mom because she likes those kinds of things. I don't think she will be able to go next year because of her behavior issues that are developing into bigger issues. While we are going out of town, my older sister is inviting a bunch of people to town and I know she is going to want them to stay at our mom's home. I pick up the expenses because mom's money doesn't go that far.

I have to sit and listen to how I make the most the money, then I have to listen to how they can't do things for whatever excuse it is this week, and then it is a free for all at mom's.

I found myself having a discussion with my mom today that I walked away from going, why did I even try. The discussion was over her remembering and forgetting things. I walked off telling myself that I was the idiot in that conversation.

I just feel very frustrated and normally, I can keep those feelings at bay and focus on the humor, but it seems today that everyone around is in their own universe leaving me to wonder if I missed something.

I swear family will be the death of me, I sent an email out to my siblings giving them updates and I recommended they read up on the stages of Alzheimer's because we have a new normal with mom. I think I have 2 siblings that are in denial and clueless, I have one sister that does try to help from a far, but the others it is a lost cause.

Thanks for listening, I just needed to let some steam off because I know there are many in this group that understand what it is like to watch a parent not be your parent. I am not even sure who my mom is right now, but she is not the same woman that raised me and moves farther away everyday.

Thanks for listening and for all of you 24/7 caregivers, May God Bless, you are the best in my book.

19 Comments

Yup. There are always going to be some days like that. Vent away!
I am glad you wrote, dkjellander. We live in a crazy world where nothing makes sense. Sometimes the person with dementia makes more sense than the other people around us. At least the person with dementia has a valid excuse for their misbehavior. It would be nice if your husband was more supportive. Some people just aren't very good at dealing with serious illness, so leave it to other people around them.That may account for the majority of the population.

It does feel like we are so all alone in the world. The person we're caring for is beyond conversation quite often. My mother can say so many mean things that walking away has gotten to be the thing I do most often. Family falls by the wayside, thinking you have everything handled. They certainly don't want to deal with it, so rarely even call. Friends? Forget it. It is a lonely existence.

The cruise sounds like a nice treat for your mother. I hope it will be just as nice for your husband and you. You sound like a daughter who is doing a wonderful job without a lot to work with.
JessieBelle, Thanks for your kind words! I try to do my best, but some days it tests my nerves.

I travel with my mom because she likes to see things and my older sister did not take mom too many places. We just got back to mom's home on Sunday and I have seen a real decline in her behavior since we got here. That bothers me very much. I feel like I have no idea who else to talk with except this group because I know on here there are many that are in or have been in the same boat I am.

The cruise should be fun, because my best friend is taking her mom that is in her 70's. So it is 2 old ladies, but it will probably be mom's last. If her behavior continues to go downhill, I won't be able to take her out a lot.

I just feel so alone today as I watch her behavior get worse. I am glad you responded.
I took my husband (86, Lewy Body Dementia) on a domestic cruise last July, with our daughter along to help. He died in November. I knew that would be his last major trip, and as it turned out, it was one of his very last outings. He got sick and wasn't really able to participate in the second half of the trip, and it was a lot of work for DD and I, but I am very glad we did it.

It sounds like your situation is ideal, with another elder along with you.

It is very, very sad to see that final decline. Making the most of each day is hard, and worthwhile!
I wish it was always so easy to see things with compassion instead of wanting to take a fly swatter to them. :) Thanks for the good words, Jeanne.
Jessie, absolutely everyone has days when they are looking for the fly swatter!
Jeannegibbs, we try to mom on one every year that we can afford it. Next year we wanted to take her on an Alaskan cruise, but I don't see that happening.

The hardest part of me is getting 2 of my siblings and their children to see the changes. My oldest sister always blames it on mom's age.

I took my parents on their first cruise back in 1998 for their 50th wedding anniversary. I said I wanted to show my dad other countries, since he tried to show me the USA. My dad love the USA, but he loved that cruise. I said I wanted to do it before he passed away. He had a massive heart attack 60 days after our return. My mom remembers that trip as the last thing with her husband and she loves to look around.

The worst part is we get more compassion from strangers than family. We stay at one RV park for two winters and the residents treated mom well. They would interact with her, talk with her and include her. They knew she had Alzheimer's but they treated her very well. It is truly sad when those that you just met treat you better than the family that is suppose to love you.
dkjellander
Your not missing anything, I say that with 100% confidence because I know that you're using your whole heart and that's what the other's are missing!!!
I am smiling right now and I want to say thank you to you for venting and I hear ya!
I am smiling because I feel your relief, I totally get what your saying, and I know I am not the only idiot that has "walked off telling myself that I was the idiot in that conversation".
Now you get a "MOM STORY" just for you, to hopefully help you find the humor...
I call them "Mom Stories" because somehow during my most humorless times of Mom's care, she taught me things, and gave me something to share with people like you, in a needed time during the struggle of your humorless times, and that taught me to look at this all in an entirely different way.

Mom putting me in the idiot position.....

For the year after Mom's dementia diagnosis and her needing 24/7 care, I had to accept the fact my sister was useless and greedy. I became a daughter on a mission. Long story short... It was like I divided myself into 25 different people with each a separate job to be done and I did each job to perfection. I have no idea how I did it but I made it. During all the fiasco I made a point of giving myself and Mom a break on my day off of work each week. (had an aide on other days) This was a priority for sanity purposes, I gave myself that day to rest and some enjoyment time for both of us. I let her do as she wished I gave her the drivers seat in a way. I'd ask her what she wanted to do that day... go to lunch, go to park, feed the ducks at lake, take a walk etc, She usually said I just want you to stop asking me questions and leave me alone!!! She's funny, she never keeps her true feeling to herself!!! So of course I took advantage and thought "cool" I can relax too. Each week sometime after lunch, she'd say "I'm going to take a nap, why don't you rest you never rest.
""Duh, that was or should have been my first clue!!! It will tie into this story....

She was a wanderer or just liked to walk and never wanted my company and could not understand why she couldn't go alone. I'd tell her you get lost, she'd say "I'll know where I am but you won't, so I won't be lost you just won't know where I am"
Second clue!!!
So I'd say ok you take a nap and I'll go rest too!!!!

She would not nap without her sneakers or coat. I gave up trying to get her to remove them. She'd say someone may steal them. Or I know where they are if I'm wearing them.
Third clue!!!
So.... just about every week this same scenario went this way for a year.
During her nap time she would leave the house. I tried everything you could imagine to prevent her departure. 2x4's wedged between the doorway and adjacent wall so that door couldn't open, she'd grab a chair and take them down to get out, so I removed chairs so she couldn't reach the 2x4's, she found another way I couldn't figure out how until one day she demonstrated using a broom stick to knock them down, then chimes on door to make noise, she'd take them off quietly and in a way I couldn't hear them., etc etc etc. then she started to go out through a window as I guess the door blocks became too much to deal with.
Anyway she got out somehow someway, it got to the point of me calling the police and all I needed to say was Mom's on the move again!!!!
Every time I thought there's no way she'll get out today, I'm not doing that again.
So then one day she got really out of control, didn't recognize me thought I was an intuder etc. I called her Dr., he suggested that she needed get admitted into a behavioral health hospital to be stabilized.
This was really the best way to get her approved for medical need for NH admittance. As it turned out in the long run. This was a 3 locked door to access, bars on windows locked in care unit.
She was there for a few months as I was trying to get her into a NH situation as a resident. She did get better and stable during the time in there. So she she was happy to see me and recognized me again.
So then.... One day while I was visiting, she signals to me as if all eyes where on her, to get close enough so she could whisper "I can't get out through the door, so I'm going to pretend I'm resting in my bed, I'll leave my sneakers and coat on and when they think I'm asleep and not looking, I'm going to go out the window, so meet me out side."
I wish I had a photo of my expression!!!! My jaw dropping LOL
THEN.... it hit me I thought....S.O.B. she played me for an idiot for a whole year. She knew exactly how to escape in the fastest mode and saved time by leaving her sneakers and coat on pretended to be sleeping, so I'd be off guard and off alert mode, set it up so I was thinking she wasn't going anywhere, just so she could go!!!!
PRICELESS!!!!! YOU GOTTA LOVE MY MOM...
Wuvsicecream, thank you for sharing! That was a priceless story and it reminded me of my dear friend and her mom. Her mom had a brain tumor but it gave the symptoms of Alzheimer's and she had battles with her mom escaping.

Your mom had a sense of humor until the end. I am glad you shared it.

Donna
dkjellander, I came here, (and still do), to vent and got great advice, too. Some I took, some I didn't. But the venting helps me so much. It's like screaming quietly, or eating chocolate, or ice cream, or having a good crying spell when you need to. But sometimes, you just need to vent and tell someone your deepest thoughts that you just can't tell anyone else.

I took care of my MIL for 37 months and the last 5 she was unable to get out of bed to the potty. She had lost control of her bowels and had several bowel movements a day. I was constantly bathing her, changing bed linens, and doing laundry daily. Not to mention the air freshener I was going through. My most evil thought was I wanted to throw this stuff back onto her when I had it all wadded up to put it into the trash. I never told my husband that.

When I came here and vented, I was told more than once that I pretty much needed to grow a pair and stand up for myself and tell my DH I wouldn't do this anymore. I was always afraid if I did that, I would end up without a husband and a home. My husband has always placed his Mother 1st in his heart. Well, on March 26, this year, MIL woke me up to tell me she needed the potty. She always told me that after the fact. I went to her and did the hour long clean-up job, one of the messiest ones yet.

When I was carrying the "ton" of laundry to the laundry room, I stopped asked my husband "When can I stop doing this? I don't like doing this!, I don't want to do this! I can't do this anymore! I just won't do this anymore!" and I was looking straight into his face as I said every word.

I went on to the laundry room, afraid that he would answer me and we would have a big argument; but, when I came back into the kitchen, he was in his Mother's room. He came back to me and said "Email Dr. Arrick and tell him to make the arrangements to place her in Heartland". That was all that was said between us.

He left for work not saying another word and she was gone from our house at 3:30 pm that afternoon. She has been gone 16 days now and I get a kiss every morning before he leaves and when he comes home and before we go to bed. Those had become non-existent when she was here. We laugh again. He smiles again. I have seen a transformation in my husband that I didn't think would happen and I'm sure there has been one in me, too.

I don't know where I got the nerve to say what I did; but, I think the encouragement from my friends here had a lot to do with my motivation that morning.

So many people here have gone through the same situations as others and solutions for some have worked for others. Some can piece together suggestions from many to help in you situation, too. But sometimes, venting is just what you need to do and many ears are here just to listen and many shoulders are here for you to lean on.

Vent if you only need to vent, but don't ever give your MIL a bell!

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