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Lonely journey
S Kay
Posted: Wednesday, October 9, 2019 8:52 AM
Joined: 5/31/2019
Posts: 26

I want to start by saying I appreciate having this message board for a support network.  My dad mentioned my mom's decline about 4 years ago.  My dad lost his cancer battle 11 months ago, and mom lives with my husband and myself now.  The last 6 months of my dad's life were a struggle, and even though mom started Aricept, she declined quickly.  I believe she was so bad due to lack of sleep and stress.  Since she has moved in, her decline has slowed.  She still has fought any diagnosis and refuses to say her trouble is anything but normal age memory loss.  Most days are filled with multiple little problems that seem to add up quickly.  Just getting her to eat properly and brush her teeth gets push back.

My struggle comes from feeling like I have no community.  I cannot count on my siblings to help. They will offer advice like "just make her do it." I get the feeling they think I have taken this on, and that's my own fault.

I am struggling to accept my mom's negative demeanor and mean comments directed at me.  This has caused me to be frustrated and impatient.   My husband is disappointed in my behavior, and cannot listen to my venting any longer.  I'm trying to hold it all in and deal with my emotions.   (As you all surely know only works temporarily) 

I feel I am not being a good caretaker.  I am trying, but completely disheartened with not being able to get along with my mom.  I am afraid I'm going to not have any relationships remaining at the end of this journey.  I guess what I'm saying is I'm reaching out for a positive connection.  Lord help me, I honestly don't  think I can do this alone. 

Posted: Wednesday, October 9, 2019 9:26 AM
Joined: 12/4/2011
Posts: 17838

You are not alone! We are here for you not only to travel by your side but also to share the very best information we have on how to make this journey as smooth as possible.

You can express your emotions here.  You can share what is going on and we will jump in with suggestions of possible solutions.

Your task is not easy but we all were in the deep end not knowing how to swim. You can do this!

Posted: Wednesday, October 9, 2019 9:57 AM
Joined: 4/3/2019
Posts: 257

S Kay, what you feel is all too common with caregivers.  It can be SO lonely and so stressful, and when you are caring for a loved one who isn't very nice to you, that makes it even harder. 

This is a great place to vent, get advice, etc . . . it's truly a supportive community.

My mother sounds quite similar to yours- she has a very negative/mean streak which is mostly directed at me and my Dad, but refuses to get diagnosed, while we have to do so much for her.  It's totally understandable that you FEEL you aren't being a good caretaker- but you have to remind yourself that this is a difficult, imperfect, incredibly challenging journey, and it's perfectly normal for you to have the emotions you are having. 

Seriously, this group has helped me SO much . . . I'm single, have one totally useless sibling, and having to help my parents is sometimes more than I can take.  Here, I've gotten support, sometimes "tough love", and beyond all else, compassion - that is why I can manage now. 

Remind yourself that you are doing an amazing and beautiful thing, and come here and keep talking to us- someone is always here to listen.  And there are many people here whose loved ones are much further along in this crappy journey, so they have lots of solid advice. 

Take care, and know that you aren't alone!

Posted: Wednesday, October 9, 2019 10:52 AM
Joined: 9/15/2019
Posts: 87

S Kay, 

Sending you a big virtual hug.  Your words are exactly how I feel.  My father sounds just like your mother.  I know the feeling of just wanting to crawl into a ball and cry as they shout and yell at you.  Something about having my father treat me so badly hurts so deeply.   You are not alone at all, others are walking the journey too.  This board has been great for me, support and advice, especially from those that have already been on the path where I am.  Use the board often!    I have been living with my father in his house for over a month, 1,000 miles away from my home and husband.  I thought I could bring Dad home with me, but I am wondering if a care home near me would be better.  Every day I flip flop on what I think I should do.   I worry about my marriage, and how bringing my mean angry Dad home will affect it.  You are not alone!  We are all here for you!  Post and vent as often as you want!  Hugs! 

Posted: Wednesday, October 9, 2019 11:58 AM
Joined: 10/9/2014
Posts: 901

It really is difficult to get along with someone who refuses to allow it. I recall in the early days before my LO was diagnosed. I could not figure it out. WHY was she so difficult, challenging and confrontational?  I was perplexed.  Later, it all made sense.  Once, I knew that the dementia was making her behave that way, it really helped. I'd try to focus on how she wouldn't be that way, if she were thinking clearly.  Still, it's hard.  If it's disrupting your life and marriage, I'd explore options for help. That's a great thing to do and I'm glad that I did.  You need breaks, time to recharge your battery and to have fun again.  I'd beware of caregiver burnout and keep yourself and your husband as a priority.  Self-care is crucial, imo.
Posted: Wednesday, October 9, 2019 3:57 PM
Joined: 8/10/2016
Posts: 1956

(((S Kay))) welcome. 

My mom lived with me 15 years.  A year ago I bought another home and live there, let my mom live in my other home.  My siblings felt the same way for a long time.  My BIL would tell me it is your home, make her do this and that.  My sisters didn’t say that directly but I know they were thinking it.  They did things with me, for which I was grateful, and no they don’t want to hear it.  So learned to be quiet around them mostly so would still get to do things with them.  Mom is completely medically noncompliant.  Absolutely doesn’t feel she has any problems even though she had a stroke in March. Can not reason with her, I try not to try, much more peaceful.   Here is where I come to get understanding and to try and help others by understanding.  With time my sisters are seeing a little.  My sister next to me tried to reason with my mom at hospital.  I suggested quietly that she not say anything and just let mom talk.  She said to me that’s the problem you have been quiet for 15 years.  Well 30 min later my mom getting louder and louder in a public place my sister finally gave up.  My sister apologized to me later.  Your siblings can’t understand til they experience it.

You need to get back to your husband.  This can go on for years as you see.  Would think long and hard before moving any parent in to my home.  Feel I made a big mistake thinking I was doing a good thing, meaning well.  Started  having physical issues from the stress.  Their basic personality just seems to exaggerate.

Take care, come here as often as you need to.



S Kay
Posted: Wednesday, October 9, 2019 6:03 PM
Joined: 5/31/2019
Posts: 26

Thank you everyone! Your support and caring has made a huge difference in my day.  I was so discouraged this morning but I feel like this is not impossible.  Appreciate hearing others second guess all the decisions that have to be made. (And sure needed the virtual hugs!) I will definitely make an effort to put my marriage first through this. I will work on not reacting to my mom's need to argue.  I'm sure this will continue to get increasing more challenging over time.  So this new network for me is invaluable.   Many, many heartfelt thanks!!
Posted: Friday, October 11, 2019 9:26 AM
Joined: 12/2/2018
Posts: 35

S Kay, as a caregiver for my mom, I feel the same way. I constantly wonder if I am being a good caregiver and what more I can do. My mom has such a big mean/negative streak that I avoid her most of the time just to keep the peace. Mom wants to talk to me but mostly mom wants to belittle me, elevate herself and demean everyone she has contact with, friends/relatives, etc. I try to say this is the disease not my mom, but it is just so hard. Sorry if this is really depressing.
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