Do you hold it all in when your family doesn’t care?

Schmail13

I’m in inner turmoil & my own worst enemy because I can’t get over the lack of care & concern from the family.  I can’t shake it & it consumes me 24/7.  Her condition worsens , I make it known & still nothing . I’d like to scream at them all & tell them all to go to hell !  I keep it all in because it will crush her if my true feelings came out but it’s ripping me apart inside .  I just needed someplace to let this loose!

M1

Well this is certainly a safe place to vent. Have you got a clear idea of how you want them to respond? Maybe this is a place to work that out too. For example: is it sympathy and understanding that you're not getting? Do you want or need help planning ahead? Financial? Hands-on? Just throwing out ideas here...

Sjodry

Schmail13,

I understand your feelings. It is frustrating to want others to share the same loving compassion that you have for your loved one. I have come to terms with the fact that my sister is a different person than I and no amount of wishing she would be different, will make it so. Some people do not have the capacity to “give” what they don’t possess. 

We all have the ability to control our own behavior only and not anyone else’s. Since I have figured this out, I have found it easier to let go of any expectations that I might have had about her. Being able to let go of that anger and frustration has allowed me to focus solely on the journey I am sharing with my mom and enjoy our time together.

I hope you are able to come to a place of peace about it in your mind, it will relieve a great deal of stress if you are able to.

Take care.

Sandy

Schmail13

Honestly it just breaks my heart for her . This was my decision to care for her and I’m fine to do it alone . However with that being said, hows mom/nana? What stage is she at now? do you need anything  or do you need a break? wound go a long way . Just hearing the words to know that they do care. Holiday phones calls & visits is all she gets.  Her phone doesn’t leave her hands just waiting for “that call”. The saddest part is that no matter what I said, not a thing would change. I tried that before when I thought we might lose her due to a different illness & still no phone calls or visits . Sadly it’s more important to my one sibling that his name is on the assets when she is gone. Makes me want to puke .

Stuck in the middle

I have a brother and middle-aged nephew (his son) like that.  I haven't heard from either of them in years.  In fact, they quit calling and writing my mother when she went into a nursing home and had to stop sending money to them.  I can't change them, and I'm not going to let their lack of empathy eat me up.  

How do I do that?  I use the Serenity Prayer.  I pray for the courage to change the things I can, the patience to accept the things I can't change, and the wisdom to know the difference.

Cynbar

Unfortunately this is a familiar scenario in so many posts here. The sad truth here is that you can't make someone care. I hope it gives you some comfort and some perspective to know that you're not alone. The Serenity Prayer has helped so many people in different situations, I think to can be helpful for you too. And, always feel free to come here to vent ---- absolutely no one understands the problems of a caregiver except others in the same boat. Try not to give your relatives so much power, it's siphoning off energy better used for your mom and it's not changing a thing. You can only control yourself and do what you think is right, their actions are on them.

Stuck in the middle

I know the feeling.  My brother and his adult son didn't even send Christmas cards after our mother went into the nursing home and could no longer send money to them.  She worried about my brother to the end of her life, and at one time had the delusion that he was working at the nursing home and didn't speak to her because there was a rule against employing relatives.  

I let her believe the man who resembled my brother was him.  It was a comfort to her to think he was employed and OK.  I had long since gotten over the way he treated her all his adult life (long story).

How do you do that?  The Serenity Prayer helps me.  I ask for the strength to change the things I can change, the patience to accept the things I cannot change, and the wisdom to know the difference.

Gardening helps with anger.  People think I'm being nurturing toward the desirable plants, but I'm actually pulling weeds and thinking "Die, green scum!" 

PickledCondiment

Allow me to add on to M1 comments. First and most important, you don't hold it in.  Your anger, frustration, disappointment with family is real and reasonable. Maintaining your mental and physical health at this point in time is just as important as caring for your LO.

You may well find strength from deciding and defining how you want family to respond, the tasks you expect them to take on.  In my experience there is power in speaking your piece (calmly, rationally, firmly) to family.  They may have no idea what tasks you're handling and may step in.  If you tell them and get no response, negative response, you've had your say and you now definitely know how they feel. Based on that information, you'll need to plan for your LO and yourself, moving ahead as best you can.

Jo C.

Sjodry and Cybar's Posts really resonated with me.

 This sort of dynamic from family and my LOs friends was at first quite a stunner for me.  One of the most important lessons I had to learn was simply to, "Let Go."  Hard to learn, but when I did, it was very freeing.  It really is best not to give the others power to make you dreadfully upset and ill.    You can control only one person - yourself.  I would not give the others any space inside my head. 

No; one cannot "expect"  something from another if they are not going to be wanting to be  present.  Initially I emailed extended family at intervals and kept them posted on how my LO was doing . . . . I also, for those who lived close enough was to let them know what could be helpful.  Crickets.  No one, and I do mean no one wanted to be involved; no response, I was not going to make a "thing" out of that..

Many of us here have reported how family fell away and not only that, but how long time friends also disappeared.  It was such a heartache to have that happen.

There are many reasons why a person withdraws; some are fearful of the changes and cannot emotionally handle what is happening; some even fear such a thing will happen to them, so whether conscious or unconscious on that one, they withdraw.   Some do NOT want to get involved for fear that the needs will grow and grow and they are not willing to be part of the hands-on caring

So; I learned not to hold grudges, or anger, but rather to simply let go . . . .to rile myself up hurt only me; not them.  I accepted the caregiver role; no one forced me to.  It was my choice, period  SO . . . . onward I went.  I also learned not to give out periodic reports on how things were going; if someone wanted to know; they knew how to reach me either on phone, on computer, texting, or by snail mail.  Nothing.   No one asked.

I felt especially bad about my LOs friends no longer calling nor  dropping by which they used to do quite frequently.  So I decided to have a little coffee and cake get together one afternoon for several old friends; not one of them would accept the invitations.  Not a single one. Fear?  Not knowing what to say to my compromised LO ?  Do not know  It is what it is.

About a year later, it was time for my LOs birthday.  I did send out an email a few weeks in advance letting her sisters and other family members and friends know. I did not plan a party, but just said how much my LO enjoyed cards all of her life and how much she would enjoy getting birthday cards.  I reminded with another email about a week prior to the birthday.  I so looked forward to her being delighted with her mail.

Not one single card came; not one.   What mattered was what my LO would feel and how she would enjoy the cards . . . . so; I went to the Hallmark store and bought up a large number of cards; I took them home and signed them from the different relatives  and her friends and addressed them as though they came from different ones .    My LO never noticed they did not have a stamp on them.

Well; she really was absolutely delighted, smiling and smiling and enjoying her cards from "everyone."  She kept looking at them and even stroking them.  I hung them up where she could see them.  It was not about me; it was not about the disappointing relatives or her friends; it was about my LO and that was the only thing that counted.

So . . . . if no one steps forward, remember that you accepted this of your free will and you are a blessing to your mother; she is so fortunate to have you by her side.   The rest is only negativity and it can only affect you, so. . . . . try letting go.

If family is "too busy" to be able to put hands on, perhaps they would like to contribute a bit of money each month to help hire in some assistance. If not . . . . . just let go.

I was careful not to cause a huge rift with family; they would be there for many years after my LO passed away.   Interesting, my sibling and a couple of others suddenly appeared for some visits once my LO was in a NH; evidently they felt safer and also did not have to perform any chores.   As said; I took  a deep breath and let go.

And oh yes; everyone attended her memorial service.  Sigh.

J.

rzrbaxfan

Here's my story...my wife and I moved my mom in with us because she was retired and living in a rough city.  We had no idea that she was likely in stage 4 or 5 of dementia at the time.  We knew things were weird, but thought that she was struggling with life changes.  Mom worked into her 70's and saved a ton of money, and my sister was on board to help when we needed a break.

That only lasted once.  My sister has checked out since.  She still had the nerve to ask for a chunk of mom's money as a "loan" even after she recanted on helping.  I literally do it all...dr's appointments, medicine, meal prep, laundry, stand outside the bathroom to give directions for bathtime....I even changed jobs to get a work from home job in order to be home with her.  My sister offers to help, but it's surface level stuff that really doesn't help just so that she can keep a clear conscience.  She doesn't even talk to mom when she comes over.  

How do I hold it in?  I don't have a choice.  Folks are rarely around to hear it.  I'm to the point where I won't hold back anymore.  I don't give updates, invites or ask for anything....and I'm a ticking time bomb.  The next time anyone floats around, which I'm not banking on being anytime soon, and they offer insight or advice, they are going to get swift harsh words that will express exactly how I feel.

Schmail13

Exactly! My only issue my mother always has & even as she deteriorates, refuses to see an error in their ways. Especially my golden child brother. So a good portion of me bottling up is because of her . When the end comes & handouts are expected, then the volcano will probably erupt .

JoseyWales

I'm going to share "the other side". 

My MIL had Parkinson's, and dementia. My SIL lived with her and FIL. We would visit, but I had no experience with dementia at all. At the time, my own DH was beginning to have problems. I couldn't get DH to visit his mother all that much. And when we did, I was willing to listen to SIL, but I didn't know what to do to help. At all. There was so much going on with DH at our house, and a child in middle school, that I wasn't any help. DH looked like he didn't care, but that isn't true. He was struggling to keep things together. (He was diagnosed with dementia about 6 months before MIL passed.)

BUT - SIL never asked for help. Had she shared what she needed done, I would have done it. 

I've learned that I need to be specific when I ask for help. I will sometimes text one of DH's siblings and ask them to call. I have also asked them to stay with him at times. I've asked for all kinds of help with household things.

I guess what I'm saying is that there are probably family members who don't care, but I think a lot of them just aren't sure what to do.

rzrbaxfan

I respect the view of "the other side", but man, I've laid it all out there.  I've said look, just sit with her, let her talk, don't correct her when she's wrong, don't try to make sense of her rambling, don't buy in to her pity stories....just be in her presence and let her ramble.  I do this every single day...often times while I work or try to relax.  I get no break from this.  Ever.  Want to help?  Come sit. Let her talk.  Let me leave the house for more than a couple of hours without her wandering around looking for me.

***Crickets***

Occassionally, people visit and bring her diet Coke (which she can't drink), bring her presents (which she doesn't use), or try to meddle and fix everything they think is wrong.  Then they offer sage opinions behind my back like "I think she's just manipulating him" or "I think she belongs in a nursing home".

I told my cousin (who is helping her mom recover from a stroke) that "they just don't understand"....she said "they have to WANT to understand".  My family doesn't want to understand.  Or if they do, I don't see it.  They want to pity me and call it good.  And it's not.

Oh, and we have a "golden boy" as well.  He's visited 3 times in the past 2 years.  but it's ok, because he's "busy".

Schmail13

I’m guilty of not laying it all out there , because I don’t feel I should have to ask. In 2019 she was in the hospital & I was scared I was going to lose her . I sent a text to the entire family expla that I wasn’t sure she would survive & asked for calls or visits because she needed it . That was my reality . It wasn’t about not knowing what to do because god knows I knew nothing about dementia. It was all about making her feel loved . Caring for someone ones from love, not knowledge. I research a lot to know what to do . No disrespect to the “other side” but I believe my situation is purely lack of “time “ & caring .

LarryFeltonJ

I try to hold it in, realizing that I'm the person who jumps in and does stuff, and other family members just aren't (or when they try get freaked out by how all-consuming it can be, and wind up being more of an emotional drain than the things they try to help out with are worth).

Right now I'm a bit of a short-term wreck, getting my EO BIL ready to fly down to a facility near my wife and I, and every conversation I've had with my closest relative has ended in me getting furious.  I've stopped asking for other relatives to make simple acommodations, because the grudging reaction demoralizes me, and it's easier to do everything myself.

So yeah, I try to just carry it, and vent in places like this.

rzrbaxfan

It's hard no matter how you slice it.  If you tell someone exactly what to do and they do nothing, or if you give them the freedom to do as they wish, and they do nothing...in the end, they still do nothing.  Just know you are not alone.  Someone once told me "a mother can care for many children, but not all of those children will grow up and be able to care for her".  

Just know that you are not alone in how you feel.  Keep up the good fight.  

Schmail13

Thank you all for being here !! We all ROCK & will get through this !