Caregiver respite - how do I get the family to understand?

Great suggestions from geewiz! There is no rule (fortunately) that respite can only be provided by family. An adult day center could be the perfect solution, and give Mom a change of scenery and new people to tell her stories to.

My other suggestion would be to grow a backbone. Sigh. It's hard, I know, but putting your sanity at risk so as not to hurt your mother's feelings or to live up to the unrealistic expectations of your sibs doesn't really make any sense, does it? "Sis, I'll be leaving as soon as you guys arrive Sunday. Please bring something for your lunch -- Mom likes KFC, and you know she loves your homemade lasagne, but whatever you want is fine with me. I'll be back around 6 pm." Be pleasant and firm. You don't owe anyone lengthy explanations.

Good luck!

The selfishness of some sibs knows no bounds. For over 6 years now, a sib who lives just a few blocks away will use every excuse in the book why she can't help. She does help, but not for more than usually a couple of hours A MONTH!! She is actually a very bitter, vindictive person, even though she will never admit it. I believe she is trying to get back at me for many a past hurt, and by denying help to my mother and me, this is the most convenient way for her to do so. How very spineless, gutless, cowardly, and incredibly selfish of her ...and yet, she will sit there on Facebook and post Christian word or scripture photos all the live-long day, trying to paint herself up to be such a wonderful Christian... She is SUCH a hypocrite!... The only reason I still deal with her is because I have to. She has not appreciated what I have done for HER mother in the slightest, and it infuriates me to no end. There will come a day though, when I will be free of her constant back stabbings, and I look forward to that day, as I need to cut all ties with her, for my own peace of mind. Many of you will not understand, but there is only so much I can take, and I passed that threshold years ago. Good luck and God bless you!

Hello all - I posted this question almost 2 years ago and wanted to let you know what has gone on. I am going to therapy to try and deal with the issue of my siblings. I tell them when I will be gone and let them figure out who is going to take care of Mom. I just email them with the dates. In my caregiver support group which I found thru Kaiser I realize the importance of respite. I really do not care if my sibs understand or not and I have grown a backbone these last 2 years. This site has been so important to me. It is hard to be in a caregiving situation if you have no one to validate your feelings. Now when her other children come to visit - I leave if I want to. No more making food and trying to make it a party just because one of her kids decided to visit for a couple of hours. Screw that. At first the family did not like my new 'backbone". Of course they would not - it means they have to step up to the plate more. Now they pretty much do what I say because if they do not Mom may end up with them. It has changed the family dynamics greatly because I was always the youngest and considered a "flake" by the more responsible members. Ha ha the last laugh is on you.

Hi, I am so sorry and I feel your frustration. When I started caring for my motherinlaw after her stroke and then other medical issues shortly after I realized I could not just go to walmart. Everything has to be planned and thought about. In my sleep I am thinking I can not over sleep because I have to get her up, feed her, get her meds and so on. I truly understand....
Do you belong to a church does your Mom? Are their any neighbors who you trust to come sit with her for a hour or two?
What kind of insurance does she have that you may be able to get home care?
Can she go to a adult daycare? I take my motherinlaw two days a week from 9-4 an it helps. I don't let go of the repsonsibility but she is somewhere else and can interact with people her own age.
Can your Mom go to a Biblestudy, out to lunch with friends or family?
It isn't fair for just one sibling or daughterinlaw to take care of Mom. It just isn't.
Your have a sister close by ours are in another state.... there are a few phone calls and so we do it all for the most part.
You may just have to leave and find someone to stay with her once a week.
You have to go walk, excerise, be with your friends and do things for you.... even just go to walmart and just walk around the store.....
Take a long shower, read a book, go for a drive anything that will help you to mentally rejuvenate.
I didn't like the person I was becoming sarcastic, angryier if that is possible and resentful.
I have fallen apart three times begging my husband that I don't want to do it anymore.....I do not want this responsibility...... he tries to help where he can since he works full time..... but this is his Mother...who has lived with us for about 11 years...... I have been caring for her the past 10 months like this..... since her stroke......
We argue about doing her excerises, eating, drinking enough water, taking a bath, watching to much television, and so on....it is tiring....
My mind never stops thinking about what I have to do for her or with her.
I have my own physical issues, the house, grandkids and so on too...........
I understand....... please call your agency on aging or whoever works with senior adults and see what they have to offer....
check your local churches or assited living homes to see if they offer any classes for support...... we had one here locally for 6 weeks....and I loved it....I got out of the house...Mom stayed downstairs and one of the staff would watch her for me so I could attend the group.
Don't be afraid to ask for help especially if someone has offered like a neighbor.............
I tell my husband I may just put myself in a insane asylum....hhahahahhahahahahh
I love this website......I can vent and hear others stories, encourage and support them too....
Honey don't give up.....
Ask your sister what could she do to help you.? Could she watch Mom for two hours on Friday so you could go workout.
Sat for the afternoon so you could go run errands since it is easier without her and you could get more done.
Ask her from your heart what could she do what is her schedule like on such and such day. Would she be willing to do blank for you?
I always pray first and let God go before me....... and tell God what you need.....
After 10 long months of caring for my motherinlaw we got a card from a family member saying thank you....... WOW that means alot..... because they have no idea and live so far away that we do it all..........they have their lives and families.
My marriage has suffered,their is no privacy, intimacy, space even though she has her own room, we hear everything...... 11 years now...... we have been married for 13.......
Well I have vented too it seems..... I just understand..... it is like having a child.....
it is a process to get her up, dressed, fed and out the door.
She forgets thinks I tell her like we have a Dr appt..... and so on. ugh.
ok...... we need to get ready for the diabetic nurse to come so take care.....
Do not give up........
Frustrated2012

Whew that was theraputic...been holding it all in for a while, thank god for this community where you we can share, with no reprocussions (friends dont wanna here this crap, lol) and support each other!!! Much blessings upon us all!!

As a follow-up to my above post... I also have an out-of-state sib who visits once a year, and helps a little for that one week that she's here. Last time she was in town, she stated, "I never call" her. Ummm... Did it ever occur to her that I might be too incredibly burned-out to feel like calling?? Hey there!! Why don't to call ME once in a while, you know, THE ONE WHO CARES ALMOST 24/7 FOR YOUR MOTHER, rather than thinking that I'M the one who has to call YOU?!?! Why are these supposedly Christian siblings sooooooo incredibly selfish??? Geeeeeeeeze!!!

I can relate to a every single story here. I no longer speak to my sister, for almost two years now. It breaks my heart but she is selfish, and in her own world and seems to care for no one but herself and as a result my mom suffers. I'm lucky if she visits twice a month and even then its always on a timer, one hour here, two hours there, God forbid she should ever just spend an entire afternoon with her. Hell would have a better chance of freezing over first. Am I bitter? You bet I am. Especially when my mom makes all kinds of excuses for her poor excuse of a daughter. I love my Mom and do everything for her but when she starts making excuses for that sorry excuse she calls a daughter it just sets me off. thanks for hearing my rant and thanks for sharing all of yours. It's nice to see I'm not alone in going through this.

I feel for you, I am in the same boat...I have been doing it for 8 ys and my family deserted me in the first 6 mo's. My mom has severe arthritis as well. She is completely dependant on me for every little thing. she doesnt speak much and never was a wonderer But she would not even get out of bed or feed herself if I dont do it for her, she is incontinent and unable to dress/bath. I need to tell her over n over to take a bit if the plate is in front of her or basically prompt her for every task about every 20-30 seconds. she wont say a word if she is wet, spills or need a tissue so I am constantly cleaning up sticky or gross messes. I cant just sit and watch her every move or i would get nothing done and go completely nuts! We are not financially in a position to pay for respite so I have had just 3 weekends off since and a couple botched attempts at some time off as people committed then backed out at last minute (more stressful than not even committing, as i had hotel n concert tix that were wasted, etc) I haven't even tried since then...and that is not an exaggeration but a underggeration...I am so tired, I sometimes think i cannot do this much longer as she is only declining, And my patience is null,, my near future is feeding tubes etc....I find myself hollering at her n she doesn't deserve it, it not in her control......I do get 3 hrs a week for a girl to come in n help bathe her etc, thru social services, but that hardly allows me respite i so desperately need!! I digress, but i say this to let u know, you are not alone and thank your stars that she does still talk to you and the good things/time u have! It is lonely being stuck home 24/7 with no one to speak to! On top of her care I have to maintain the house and yard as well. I am so depressed!!
What I have found is that friends and family are truly scared of the situation. And it is not like a babysitter/children. There is no joy n growth in it and they are afraid of the what if's (things that can go wrong) and also Honestly alot just really don't care. It takes a special kind of person to give selflessly as we do!! Your best option is to find paid help...if you ,can afford it. I cant but thru this site i have found renewed strength to push n research options to help me out....dont have much time to do it so havent found much yet but I feel empowered now! Just dont give up and follow any lead given to you here!! A good one that is sortof helping is to ask for other tasks that are not so intimidating that will lighten your load in other departments. Like mowing the lawn, doing some laundry, pick up RX's or groceries, etc.....just TRY everything, be creative and pro active. Dont get in a hole like me by waiting way to long to scream for help. We are not superhumans!! Good luck to you and press forward in positive ways!

I suspect your scenario is played out with every member of this site! The stories we could tell!

How are your Mom's financial resources?? If there are funds, sign her up for an adult day center where she will be with folks her age while you have a chance to get your head on straight. Make arrangements ahead of time to have a friend call you shortly after family has arrived. Your friend will need help and you are running off to assist her/him. (Less conflict with your Mom.) Hire a companion for a few hours a few days a week. Have the companion take Mom out on nice days or you can go out those days. Any complaints about the expenditure, let your sister/brother/in-laws take a FULL day for you. Make plans early with sibs in on the plan. EVERYONE deserves some time to him/herself.

On the humorous side, my Mom is in an AL. For those not using them, family still needs to be there frequently. My local sib goes 2Xs a week and visits. No checking on anything. When the out of state sibs come in, the local sib doesn't visit. SO-O-o I am always on 5 days a week and the additional help from the out of staters, reduces the local sib's visits. I order all of the products that are needed and truck them over to AL. I pay all of the bills. Mend the clothes. Straighten out the room from the junk they leave behind (open containers of food; plants that need to be watered and flowers that die). AND I am sure I am better off than many others so, I am only rolling my eyes!

Before I moved my Mom to AL (BTW I did all of the looking for one that was appropriate) I couldn't get ANY help from the local sib and the out of staters expected me to call/e-mail each day with reports. I was so burned out at that time, I was like you are now. Since she is ok physically, ask around and you may find someone to do companion duty. A young Mom that could do a few hours while her kids are in school, for example. Everyone needs extra money these days so there are more people available.

I have the same problem with my siblings. It's always been ME who has taken care of mom....moved her in NH and out and back in with me to take care of 24/7 and I still taught full-time then...NO HELP from either sibling..sister SO SELFISH and still hasn't forgiven mom for abusing her during childhood. I forgave mom and I took most of my Sibs punishment and abuse FOR her. I have always been the "strong" one..the one that takes care of everything...a leader. I'm still taking care of mom and this is the 5th or 6th NH I've tried in 6 years. When I see they are neglecting her, I immediately move her back in with me and it DRIVES ME NUTS!!! She is late stage Alz and like a 2-3 year old...always getting into things..always...never sits down. I have to watch her like a hawk. She gets mean and tries to hit me...But sibs....NO HELP WHATSOEVER. I even called and asked both of them after caring for mom and working...no time off from ANYTHING if each one of them could just come ONE day a month so I can get some time off from mom and work....Sis said she would but as USUAL never did. She's always been selfish and never cared about anyone but herself. I've helped HER since we were little kids...saving her from mom's abuse, saving her from abusive marriages, moving her in with me and working so she could stay home with our kids as we both got divorced at the same time. She is a TAKER and I'm a GIVER. I cut all ties with her a few months ago and I totally despise her for the way she has bullied me for years and years...making fun of me because I love animals more than humans. Animals have NEVER abused me or tried to killed me. Now, she has cancer and I couldn't care less. GET someone to give you a break. As caregivers, we MUST have a break even if it's only an hour a week...That would have been very helpful for me. Good luck and I do empathize with you. Just remember, they give halos for what you are doing and NOT for what your sibs are doing.