My frustration & anger is at an all time high

Schmail13

Just really need a vent session so I've chosen this as my platform,  I believe at this stage I'm still very fortunate. My mom has LBD w/ Parkinson's 2 plus years in with the worst progression being the memory,  repetition, repetition, repetition & arumentitive. There are other episodes  that are much worse, but don't happen often.  Everything seems to bother me & I know it's just the disease but my stress level is over the top.  I believe that most of it is coming from my anger from my families lack of concern or any clue of what her reality is.  They don't ask about her health & they don't give a hoot that I've given up my life to take care of her (by my choice).  Money that will be left is what is important.  She has lived with me & my husband for 11 years and I've been her caregiver for the last 4.  I wouldn't have it any other way and however frustrating it can get, it is still so rewarding.  I don't take a dime from her, cook all her meals, buy most of the food, do all that I can to make her comfortable & happy.  That's the way it is supposed to be and should be, but the reality is that if she had been in a home the last 11 years, there would be no money left.  

I really don't know why I"m getting so frustrated as she is getting worse, but my gut tells me that it's my resentment towards my family.  I am well aware that this anger is pent up and making my situation much worse, but I just don't know how to let it go. I  just want to scream at the top of my lungs!  I'm ashamed of the way that I am feeling and know that my responses show that I'm on edge.  I'm guessing that this is not an unusual feeling so suggestions are appreciated.  

dayn2nite2

You can't force people to care and actually they have been conditioned for 11 years that you will do all the heavy lifting, so why should they care?

After this many years, if you haven't been able to let go of the need for them to care, I would suggest a counselor to help with that.  I can guarantee you that when she dies, they will all want to know when the funeral is, where is the will, how much will they be getting, etc., and everything you have done for 11 years and all your sacrifices will be brushed off by them and they will all appear at the funeral and accept condolences from others gladly.

Because the family will all want money, I suggest you draw a line in the sand beyond which you cannot give any more care - what are you preserving her money for?  To give to other family members?  No!  USE IT.  That's what it's there for.  Draw the line, look for an appropriate placement after the line has been crossed and LIVE.  YOUR.  LIFE.  Your entire life has been on hold for 11 years and counting.  How much longer?  Stop saving her money for other people who aren't there for her NOW.

King Boo

Your feelings are entirely normal and to be expected. It can be lonely and I at times was very angry and resentful.

When you are feeling less angry, consider having Mom pay for her expenses at your house.  It's entirely fine - and if you expect family to squawk, a Certified Elder Law Attorney can advise how to best do this.  You can even be paid for your caregiving, that's not an outrageous thing given the depth of caregiving needed.

Schmail13

Did I mention there was the "Golden Child"  The one that makes a 1 minute daily phone call & since retirement in November can now give her 1 day a week, 3 hours for him to bring her burger king and watch TV - that she can't focus on and he sleeps through!

She is and always has been obsessed with money and being fair to her children.  She doesn't get it & makes it about 'doing what is right by my brother'.  

Schmail13

Honestly can't bring myself to do it.  She has medicare, not medicaid so caregiver pay is out of the question.  Giving money to me to care for her would be taken it away from the others, that's just how she is.

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mburgess15

I have been helping my mother take care of my grandmother for the past year and a half she is now 95 and is suffering from Alzheimer’s. She is demanding, egocentric, and vain as all get out. I am balancing grad school while caring for her on days my mother works. It is incredibly difficult to balance her need for attention with my need to study. I resonated with your post about your level of frustration. I think at the end of the day it is important to remember the circle of life. This woman cared for you when you were an incontinent infant and an argumentative pre-teen. It is only fair that you should care for her now as life comes full circle. As far as the lack of support from the rest of the family... I think this is very common place. My mother has two older brothers, my grandmother played hot potato between them before landing on our doorstep and quite frankly they simply were not cut out to be caretakers. I think what you are doing is wonderful and it is important to remember and remind yourself that you are doing a wonderful thing for this woman who would otherwise not have this support, try to accept your reality. Look at this season of your life as an opportunity to develop patience and compassion, as these traits will serve you in other aspects of life. Good luck & God blessed.

Schmail13

Please don't get me wrong.  I totally agree on the full circle of life and there isn't a bone in my body that is resentful for my choice to care for her.  My resentment is 100% towards family that has done the bare minimum through life, not just through the hard times.

Sjodry

Schmail13,

I too, have lived this “cut it with a knife frustration “ with family, or lack thereof. You have gotten great responses above. I think the hardest thing for me to let go of was/is that my sibling (who has done zero during the last 4 years I have been solely caregiving for my mom) does not exhibit any love or compassion for my mom. We had a fairly dysfunctional family growing up with an emphasis on the “DYS”. My sister has always been the way that she is..cold, distant and a heart of cement. 

For unknown reasons to me (I suspect my sister has a great jealousy of my mom’s and my very close relationship), my sister greatly dislikes & mistrusts me. That’s perfectly okay as I grieved that relationship many years ago.But it still amazes me that at this point in our mother’s very difficult and challenging life, my sister’s heart is still so hardened. My sister does the bare minimum to interact, just to stay apprised of how close to death she is and when the money is coming. It sounds harsh to say it in that way, but is the unfortunate truth.

I have had to come to terms with the reality that my sister is who she is and will not be changing who she is or her level of love and compassion toward mom, me or anyone else. It is her loss. When mom passes, I will know that I did everything to love and care for her..and to love her into heaven.

As I have mentioned in a previous post, I have had to establish boundaries as far as family. One of those boundaries is that just because my sister is a mean, angry person choosing not to be involved with our mother, I will not allow her behavior to penetrate my loving and limited time I have left with my mom. Let it go..is sort of my mantra. You chose this journey as we all did, out of immense love and compassion for our loved ones. Our dysfunctional family members did not make our same choice. I have had to work diligently to let go of my judgment about her, but have felt better doing it. That is, I only have enough space in my heart for sharing this loving journey with my mom and there is no room left for anger or resentment.

This Alzheimer’s journey teaches us many lessons about who we are as souls and who others are also. I hope you will find your place of peace in this.

Sandy

smbren

I feel your pain.

I don't resent the time I spend with my mother.  The time I care for her.  But my siblings, it did bother me for a while that they would not get involved.  I stopped worrying about them.  I'm not going to change them, so I'm not wasting my energy on them.  When I do go away or have something going on myself, I can make them get there.

My dad is still in the picture, but my mom has had a lot of anger and agitation which is usually focused towards him.  It is better with the meds.  And my dad is stuck in his ways, so it takes me a while to convince him to do things differently because it's not like it always has been.  He tries, but he is going to be 83 in a few months and is stuck in his ways.  He also is suffering through this disease and watching what it is doing to his wife of 56-57 years of marriage. 

Like you, I don't resent any of the things I do for my mother, or to help my dad through this as well.  I don't resent the money I spend to help them both.  I don't resent the time.  I look forward to the moments that I still get to connect with my mom as it still does happen, and those are moments I am glad I still get.  It is my siblings loss that they don't try to get those moments, but I can't make those moments for them, they have to take that time and try to make them for themselves if they so choose.  

When the time comes, I will be sad.  But I know my mom can look down and be proud that her son stood by her every step of the way through this ugly disease.  Never stepped away even during the most difficult times.  I was there to hold her when she was crying until she forgot why she was crying, I helped her through the moments of confusion, through the doctor's appointments, through the meds, through the outburts.  

At this point, I don't even resent my siblings or even my mom's sisters that aren't really there so much.  I feel sorry for them because they aren't taking advantage of the time we do have to connect with her while we can.   Like today, my wife and I are taking my parents out for lunch while we still can.  She may not be completely there, but she has to eat and she is still there. 

So my msg boils down to, don't worry about the others.  You do what is right for you. 

Schmail13

I do appreciate everyone’s responses!  My heart knows what needs to be done but I just haven’t found the way to do it . Until then I just take one day at a time with my husband , my rock by my side as I let my feeling out with him .

May flowers

I have nothing to add other than I empathize with your frustration.

When my sister and I took care of my mom with ALS, my brothers disappeared. When DH took care of my MIL cancer (deceased) and now my FIL with dementia, we have gotten very little support from his siblings. My SIL hasn’t called her dad since Christmas, my BIL does call weekly but does nothing to help. So everything from moving my FIL to selling his house, to his care, it’s all been on us. The siblings say they appreciate us, and offer to help, but they never follow through, so here we are.

I get downright mad sometimes. Like you, I don’t mind the caregiving part. I get frustrated because this is their father and they are missing out on his life. It won’t be long that he doesn’t even know who they are. It also bugs me that they just assume we will handle everything because we always have. It feels that we are taken advantage of but I also know that because my husband is the oldest, they expect him to take the lead. In a lot of ways they have expected me to step into the “matriarch” role after my MIL died as well. 

I think it’s very common for one child in the family to be expected to handle all the caregiving duties. Anyway, I let myself vent awhile and  then let it go (at least until next time). I realize I will never get the support I need from family, so I lean on my husband, sons, friends and others dealing with the same thing.

Sanjea

I am trying to balance work, caring for my 93 year old mother who dementia, coordinate caregivers and search for ne caregivers, care for my daughter who has autism and a check on my brother who lives in another state who has schizophrenia. The most difficult challenge is the  hearing my mother belittle me because she thinks the caregivers teal from her. She constantly checks her wallet...she thinks a caregiver took her money from the bank, went to jail but still comes to work after she depleted her savings...all untrue..I love my mother and several family members and friends have told me that if it is taking a toll on me...and it is...I need to search for respite for her or a nursing facility...My mother is ambulatory, can heat a meal, wash herself, walk around the house for exercise with her rollator, dress herself and talk about old times with clarity and humor...at night (sundowning) is when she argues about the caregivers taking her clothes, stealing her social security card and taking her hearing aids when she misplaces them..I have cameras throughout the house to watch when I am and not at home..Ive been feeling resentful, angry and drained because it is so much to handle..I am trying to find reliable caregivers so that my role as a caregiver can diminish with a support staff... My mother is not on medicaid and everything has to be paid out of pocket. I need respite, a vacation, peace of mind..It is difficult to see my mother go through the changes in her life..Before dementia, we traveled and spent quality time together having a great time..now, she wakes up grumbling about untrusting caregivers, or a fictionalized story of a family member doing or saying something that  hurt her or made her angry or verbally attacking me for allowing thieves to work in the house. ..She knows when to behave around some people but around me, the tidal wave overflows with her anguish and disdain towards me because she cannot have her way...I am contemplating a place for her however I feel guilt because she has always been there for me..A rock of support, loving, compassionate, caring..I feel if I can find the right people to work with her at home that it will provide me with some respite...it's the nights when no help is there and she knocks on my door to fuss about someone or something at 1 am.. I am a Christian, a prayer warrior..as my friends and family would say, " I am a great support to them and they are blessed to have me in their lives." I believe it will all work out one day...its right now, where I need to feel that hope.

Marla2127

I relate to this so much although my 84y/o Mother does not live with me.  She is 2 miles away living with her 93 year old husband.  My sister and 3 step siblings live thousands of miles away and I absolutely feel like I am on my own.   I seem to be more angry than sad most of the time.  I have not worked in 2 years because I go to their house daily because they refuse to move to assisted living.  My stress level is off the charts and I know this is taking years off my life.  There doesn't seem to be a good answer...   I hope it helps you to know you are not alone.

Schmail13

One thing is clear & that is that we are all in this together experiencing so much of the same thing. I'm really glad that I created this post and it helps me to see what others experience.  Thank you all !

sunnydove

Our situations are SO similar! I don't know how to direct message here but sent you an "invite" whatever that means. Would love to share with you what has helped with me.  

Schmail13

Hi sunnydove, I just accepted your invitation & would love to chat !!

Gracey Lou

I'm in the same situation with my family. It sounds your mother is worse than mine, so I can only imagine how much worse that'd make me feel. I'm about to my breaking point and feel I am begging for help that will never arrive. I went so far as to offer to pay my nieces to spend some time so I can get something done, or just maybe do something for myself, but even that didn't do the trick. I know this post is a couple months old, I hope things have improved for you at least a little. Try to take care of yourself.

Schmail13

@ Gracey Lou I actually just read your post , then saw you commented on here. I’ve actually connected with someone else in a similar situation and thinking maybe we can all start a chat . Reading your post sounded just like my life!!  Although I have no answers to help & no end in sight for my sit, it does help to chat with people going through the same . I’m going to send you a connect request through here . Hang in there !!