Who cares for US… the caregivers!?

I have the exact same thing, minus this statement 'tell me they are sorry all of “this” falls on my shoulders.' and this statement 'They say they just can’t stand to be around him' .They absolutely positively believe it is RIGHT that all of this falls on my shoulders. But they've never explained why.

I'm 61 and caring for my mom who is 100 and in AL and my husband who is 70 and is showing signs of coginitive decline.

I got out of the hospital last Wednesday after being bit by a dog- developed an infection in the joint of my little finger and had to have surgery.

While I was in, my husband called me to bitch about various household chores he had to handle and how hard it was for him. I told him not to bother to come visit me as actually, being away from him and in the hospital was a relief even though under crappy circumstances.

When I got home my mom called and said " Oh you are home! Are you settled in? Here's a list of things I need from the store.

My son and next door neighbor were the only truly kind and helpful people in this situation.

I know both my mom and my husband have cognitive issues but still.. I really felt like crap to know that my injury got so little consideration from either of them. Both of them have had Big Medical Drama in their lives I have been there for them and they still carry on endlessly about their maladies.

I just felt so...insignificant. And good ole Resentment reared it's ugly head but it's hard not to feel that way. I am all outta compassion for anyone but me for now.

I remind myself daily I am worthy, deserving of kindness and consideration. I may not get it from the people I wish to receive it from but I am worthy, nonetheless.

Are you and I twins??
I just went thru a weekend of hell with my mother and had to make a very hard decision. I moved her in with me in February 2022 and have had NO help from family, despite reassurances of “We’ll be there for you” and “Just ask if you need help”. She walked out of the house to “walk home” (750 miles away) twice and was verbally abusive, etc.
I should not have called my brother when I was upset, my mistake. But he cussed me out and yelled “What do you want me to do? I told you this was a bad idea!” BTW he’s visited 3 times since she’s been here.
I am moving her into Memory Care next week. It’s for the best for both of us and she will get the care and supervision she needs. I have twinges of guilt and know I will cry when I move her in but it’s time. I can’t take the abuse from her or the anxiety it’s causing her and me.

I’ve realized society, friends and family say the right words but when it comes to backing up those words…they don’t want to spend the time, money or inconvenience that comes with the responsibility.

THANK YOU ALL!!! Thank you so very much for all the positive responses and support! I've got tears in my eyes as I read through them after being away from the forum for a few days. I appreciate you all!! {{{group hug}}}

This is why I always recommend a caregiving team made up of several individuals that help care for the person in need. You need to start gathering a group of family members, friends, members of faith community and paid staff to help with care. Use times when others are caregving to tend your own needs.

Get some balls girly-girl cause your going to need them. Show your letter to us, signed by you, and see their faces go fifty shades of grey! LOL.
I think you have earned it. It's time for the others to take some gravol for the sickness and pitch in. As long as you stand back and do nothing, they will do nothing. Some people, UGG. Makes ME want to throw up.
My two cents.

Temper
God bless you, you are a wonderful daughter!

I don't blame you for feeling sick of it. You have done more than your fair share and it's high time someone else step up. If financially feasible, can you arrange "respite care" with an adult daycare or hire a professional to assist you? These can be expensive options, but there are programs out there to assist financially (e.g. Medicaid in the community Area Agency for Aging, Meals on Wheels, church meals, etc.). And if you do get sick or injured, as happened to my cousin who is also a caregiver, the other family members had to get involved. Start building a network of trusted friends, social workers, and other relatives aside from those mentioned here. They may assist you because it's the right thing to do and in doing so, give you a much deserved break! God bless!

Me too. They have some nerve. You & me in same 🚤 boat. It’s totally unfair, sickening & despicable. I know how you feel. Hugs 🤗

AL is better but there's still the "I need this and that" to deal with. Family thinks that she's just fine but I get the behind the scenes information. It's still hard to care for them when they're away, make sure you find something close to you. Family shows up once or twice a month or when they feel like it. I'm the bad guy because I'm constantly dealing with her and they don't understand what burnt out means. I'm mean to her and I'm going to let them care for her now. I was told because I'm her POA that I'm responsible for everything? No way! I've been missing work hours and gas money for years without any reimbursement and the family thinks that's ok for me but not for them. They're trying to get me to get the house ready for sale and I'm wanting a break!! All about them! You do need to get yourself some help. AL is a good start.
Take care of you!

WhisperingPine71702: Perhaps you will have to place your father in a managed care facility, else you fall ill and will be good to no one.

Contacting an Elder Law Attorney helped me figure out an end-of-life plan. Whatever issues Dad has, can be addressed by the attorney and you can find out how to solve your issues, starting with people who have shown you that they are not loyal and not dependable.

You have to come to terms with your father's needs and how HE can pay for them. You need go let go of being his care taker and start learning how to be a great visitor who can put joy in both of your lives. Make that call and then book yourself a well deserved vacation while he gets used to his new home.

I feel your pain. My sister doesn't even communicate much less help. Hugs!

It's good to be sick of it. This is motivation to seek alternatives, otherwise you have no one to blame but yourself. Research, make phone calls, visit facilities.

It's an emotional situation making anyone have tunnel vision. You only see, understandably, the cr*p you're in and the lack of help from your small circle. You're down to your waist in slooow quicksand, the Lone Ranger ain't coming, and you're fixated on the quicksand, and who you'd think would help, so intently that you don't see the branches all around you. Start reaching out for one, then another. At the end of this crumby journey you'll be a great resource of information and you'll become something fierce and proud.

Your situation is a monster, a who the h*ll wants to do this, hugmongous, rip snorting, pain in the butt. It'll wear you out, and make you cross-eyed, but you will gain a lot. And you will encounter good people.

You'll learn about services, and agencies, and what does and doesn't work, and as an added bonus you'll learn about stuff you may need for yourself someday.

I'm blown away at all the great responses to your post.

Learn from others, including your brother and father's siblings. Regarding family, look at them, in a detached way, as the interesting bugs that such a family is. Realize that family is more than blood. Learn their language, it'll be helpful in the future.

You don't have to listen or comment on anything. Politesse is an art form. Have fun with it. Have a bag of talking escape tricks.

Btw, beside waiting for an offer of help from you family, have you actually voiced your need for a break or help from them, or are you just reeling and paralyzed in disbelief. There were times when I've been so stunned that words couldn't come to me.

Have you asked them to perhaps help with research for services for your dad, or make arrangements to get the house or an appliance repaired, or for a lift, or some kind of little assist tailored to what the nincompoops can manage (always with a smile in your voice even when you've popped a blood vessel).

We don't wish bad on anyone but one day, and it might take years, they may come to you saying - Hey, we're in this horrible pickle and you've been through this can you help, or tell us how to manage? Who do we call? And you can smile to yourself and respond - Man, that's terrible, but don't worry, you'll figure it out. And then go on vacation.

Yes I agree with "Surviving" keep it short, sweet and to the point. No more overreach. Amen...

I too have siblings that don’t want to help with Mom’s care. Yes it is frustrating, infuriating, but mostly sad. I have been the sole caregiver for my Mom for 2 years now. The siblings come once a week each on the day and hours they choose. If they have something else to do that day they tell me they can’t come. Bottom line is you have to seek out help elsewhere. This is what I have done. Look into your local community senior programs first. I get an aide for 6 hours a week ( I have her come for one day) paid. If your parent can afford it, hire an agency. I have help come in every day but Mondays. That is my day with Mom for doctor appointments, etc. it’s expensive yes but as I say it’s what her money is for. No more gifts to selfish siblings and their families who never come around to see my Mom. There will be nothing left for any of them because as I see it the money is there for her care. I will use it for aides so I can have a life and I am a better caregiver to my Mom when I have breaks! Also, I limit conversations with the siblings. Talk only about my Mom when necessary. I am not interested in their lives traveling etc as you say your sibs like to tell you. As they are not interested in my life of caregiving. At times I think it is sad and I do get angry after all I am human! But then I look at my Mom who was a good Mom. She didn’t choose to have a stroke and be disabled and have her independence taken from her. She would much rather be with my Dad, but it is not her time. So I will continue to do what many of us here have chose to do and care for my mother without sibling support. Which happens a lot more than I imagined. I am lucky to have a supportive husband and children by my side. It’s a tough road, but also rewarding in many ways.
Good luck to you! You are not alone! Seek out support here and wherever you can find it! Be well!

This happens in many, many families where only one person bares all the caregivers load. Thank God that He gives me strength to keep going even when I’m ill myself.

When bragging family members call, cut/shorten the conversation. They’ll get the point.

No one cares for us but ourselves . Tough choices , lonely path . I don’t feel like I have siblings who help - in fact I am disgusted with them - At this point I want my life back too . Really not sure what to tell you but find a social worker . A caregiver support group , take care of your health - stay clear headed and grounded . I don’t think 🤔 I could put my Dad in Assisted Living but I may have to place him somewhere eventually . Keep reaching out - there is good advice on this forum .

Good Morning,

I hear you honey...you are not alone my friend.

Plan B: Yes, you are right in thinking about this. I recently enrolled my mother in a one day a week 4 hour day program for Dementia people. I have heard about one brother's trips around every national park, Hawaii, and the other brother's trip to Ireland. Baby sister just bought a horse and went out to dinner for duck.

My life is doctor's appointments, supermarket and paperwork from insurance companies. I am in the exact same boat.

You need a back up plan such as find out from your Case Manager at the hospital or primary care doc (Dad's) about day respite programs--a medical model is better since they provide, o/t, p/t, speech and an RN is usually on duty full-time.
Nurse practitioners know a lot more than the docs.

Meals are provided and oftentimes transportation. Start out small just one morning a week or the minimum and work from there. You need a place if you wake up the morning and you are unwell you are not scrambling. The sooner, the better. Ask your sibling(s) if they can assist with the drop off and pick up for your dad.

If your dad was a Veteran, there is Aid & Attendance. But I will be honest with you it is a lot of paperwork and it is not a given. You will need your dad's discharge papers.

It's good you're thinking about this. Can you work remotely from home at night and pay yourself something into an IRA? Get a library card, bathing suit, have the Church people come and bring Communion and a Church bulletin on a Sunday as they do every Sunday for Mom.

Be informed, scroll the morning newspaper headlines online so you know what's going on in the world. Early to bed, early to rise, eat well.

Basically, you need more help. Ask the PCP to write orders for o/t, p/t, speech. You can also do home blood draw. I highly recommend an UP Walker Lite. Some insurances will pay, others will not, around $495. Ask siblings to kick in for it.

You have to make a fall back plan. I contacted a cousin who is getting her PhD. in Nursing and a brother both out-of-state sibling, the local one's do nothing and wrote everything out what to do if something happen to me. Expect the best, but make a plan for the worst. Talk to your dad about it as I'm sure if he is able he might wondering the same thing. Assure them, hold their hand and tell them you will/are always going to be in good hands.

You need a respite program in the neighborhood. They are wonderful and so needed in today's busy "sometimes selfish, individualistic" world.

Amen...it is what is and you have to deal with it. But you are thinking right.

Call your local Senior Helpers home care agency and tell your family members to all chip in!

That somebody does not really have to be you. If Dads care has become 24/7 and you have no life of your own, place him. Use what money he has and when gone, apply for Medicaid. Get your life back. And if anyone says anything just say "I didn't see u stepping up to the plate. Or helping me in anyway. But you bragged about your vacations while I cared for Dad 24/7. Well, I want to be able to take a vacation too"

dear OP :),

i wish you well! :)
you asked a very important question:

"who cares for US...the caregivers!?"

for most of us, the answer is: no one. we're on our own, helping/stressed.

by "on our own", i don't mean that some of us don't have hired in-home aides, or facilities helping: even so, many of us are alone, helping/advocating/making the big decisions/dealing with hundreds of problems. and no one is caring for us.

hence...again, we have to be the caregiver: "caregiver" towards ourselves.

:)
i wish you OP, and everyone on this forum, to be a success story. i don't know the magic formula. but i understand the wrong way to go about it (examples: not taking care of one's own health; letting too much stress build up; etc., etc.). let's all try to avoid the wrong way.

They are not "sorry" this falls on your shoulders, but it's more polite than say, "better you than me." When they begin telling you about their wonderful vacations, remind them that because they are free to enjoy themselves because you are the responsible adult in the room taking care of your dad. Legally they don't have to care for your dad, but they also don't get to voice an opinion on dad's care because they've done diddly squat to earn that right. If dad gets too much for you to handle, you'll need to look into having help come in or have him live an a facility. You can't help him if you become too disabled to function. As for the family members...the heck with them. They don't deserve you.

In our case the answer to your question is each other. For us, my SIL is the primary caregiver. They moved in with FIL a number of years ago because they needed a temporary roof over their heads (she and BIL) and ended up staying because my FIL lost him mobility quickly because they were there (long story - but basically when they moved in he was independent and in about 18 months he was fully dependent on them because he stopped doing anything for himself).
DH and I live about an hour away and we are relief care anytime they need it. He is a two person transport so we assist on all doctor's appts, if they need to go somewhere for a long stretch of time (overnight) we take over. We are over there frequently. We are phone support, tech support, counselor, anger management. DH and BIL go to football games and concerts. SIL and I go shopping and movies and other 'girls days'. We do all that we can to be their support system because we logistically CAN'T be there (and honestly wouldn't choose to be there) 24/7. If they choose to leave, he will have to go to a Skilled Nursing Home. And we actually encourage that. We do not believe they owe him care. It is up to them now to make the decision as to how long they want to stay, because we are 100% behind whatever choice they make. If they decide to stay, we will continue doing what we currently do now, but we will not be there 100% of the time. If they decide to leave, we will be fully involved in helping to find a place for him to move to and help move - even though HE is 100% against this - and his other option is to hire 24/7 care in his home (because his back up would be for US to live there and that is NOT happening.) But we will support them as best we can.

And to answer the question of what happens if the primary gets sick or needs care of their own - we are there right now. We literally cannot be there 24/7. The answer is that my FIL will have to hire someone to cover while my SIL is recovering from her surgery. OR he will have to go to a SNF during her recovery time. We don't have the bandwidth to take the much time/leave off of work to be there 24/7 to care for him. Surgery, by the way, that she needs as a result of being his caregiver. (repetitive motion injury).

But here is the thing - you mention that someone has to do it. Why does it have to be you? If you are tired of hearing their opinions, just ignore them. If you don't want to be the only one providing care any longer and you know your siblings are a dead end, look into outside help. You don't have to do this alone. Even a few hours a week might be helpful just to give you a break. Or if things have gotten incredibly difficult maybe it is time to consider other alternatives.

Also consider why your siblings don't want to be around your dad. My FIL is an abusive narcissist. Being around him is horrible. None of the grands(all adults) can tolerate more than a brief visit. I limit my actual time interacting with him directly and do other things in the house as much as possible when I can because I leave every time with a migraine. His personality is toxic. SIL avoids him as much as possible. Luckily he spends a lot of his time sleeping and just as much watching tv, so his actual time interacting with her is limited.
Is that your experience as well? Are there other reasons they just can't do it? Everyone has a story. If you just can't do it anymore maybe it is time to consider options. But as hard as it is to hear, your family may not be that option. And they have a right to make that choice. Just as you have a right to make the choice to consider yourself too!

What you have outlined is very common. If you are not able to continue consider placing him in AL, then all of you can stop in and check on him, the major burden lies with the home.
Your siblings will never step up, they have already told you that, believe them.

From your profile: "I am caring for my father, living at home with age-related decline, diabetes, and stroke."

Is he living in your home? Are you living in his? For how long? What do you do as his caregiver?

Yes, "someone to do it," but why does that have to be YOU?

What are your father's finances? Do you have POA? HCPOA?

Everyone is free to make their own choices. They chose to not be around your father. That is their right. You chose to step up and that is your choice. Now you are seeing why they don't want to do this. You need to realize they are not going to help so it might be time to look into other options. You don't have to be the solution to your father's problem. He may prefer you were, but we all don't get everything we want now do we? If this is too much for you, look into other options that aren't your siblings.