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I have been taking care of my Mothers needs for about a year now. She is 89 and physically in good health but mentally not so good. My problem is how to make the family members understand that I need a break - even though my Mother can take care of herself physically I need a mental break from her. She just talks about the same stuff over and over and over. It gets exhausting. When my brother or sister comes to give me a break my Mother cannot understand that I am leaving during "family time." So what has happened is the family comes over to "give me a break" and I just end up cooking for everyone and hanging around listening to my Mother say the same things that I have heard ad nauseam for the past 2 weeks. Has anyone else ever experienced this?? It is like I do not have a life separate from my Mothers life. So my sister comes over yesterday and I just sat her down and told her that I "visit" with my Mother 24/7 and they need to spend quality time with her apart from me. I then went to the movies which was lovely. What hurts is my brother and sister get to go home and have their lives. Their bi-weekly visits are getting shorter and shorter. The saddest part of all this is my relationship with my sister has suffered. We were very close but not anymore. It is practically impossible to just hang out together like we used to because my Mother does not understand why she is not invited and I do not wish to hurt her feelings. Anyone out there who has experienced this before?? Why do the other family members get so selfish?? I accept that I will be the caregiver to my Mother but the lack of help from others has left me very cynical toward my other family members.

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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.
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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!
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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
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I so feel for you as I am in the same boat, have been caring for my mom who has lived with me for almost 7 years now, none of my siblings do anything, 2 of them do nothing at all, and the one sister only visits for maybe 30 minutes every 4 months and she lives 20 minutes away, I have cut all contact all with all of my siblings, as far as I am concerened they are no longer my family, now to top it all off my husband of 10 years who has treated me like crap for most of the marraige, no affection, attention or itmacy for 8 years now wants a divorce caused me to cash in my mothers life insurance polices because he won't give me enough money to pay the premiums, I am so devasted, I don't even know where to begin, so sorry this wan't supposed to be about me, it is just really hard and my heart goes out to you, lots of hugs and prayers
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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!
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I, too, have sibling issues, mostly with my brothers...my two sisters are wonderful and so I feel blessed. I just wish sometimes that my sisters lived closer than 1 1/2 hrs. away! My one brother who lives right here in town has had mom over for dinner twice this year! And I had to call him...so, yes we all do go through this. I am not afraid to call though and request my siblings to help out...I usually begin with.."Hi, I really need your help..." That way I'm not sounding too demanding, yet I am letting them know that I am wearing thin and need a break. I know that I am doing the right thing by my mom, having her live here with me and taking care of her 24/7 and I know that the others who don't even call once a week, well, I truly believe that they are not honoring their mother (4th Commandment) and the time will come when they will stand before their Lord and have to answer to him. So, I try for my health to not hold grudges, resentments, or anger towards them. I keep my side of the street clean and let them worry about theirs...it really isn't my business. Thankfully, my mom can and does still have a couple of things at church that she can participate in and has some really wonderful friends who come and pick her up and allow her to hang...so I encourage you to find something for your mom if she is able. Does your mom enjoy reading, jigsaw puzzles, or even coloring? I got my mom some simple art supplies including crayons and a coloring book to give her some things to keep her busy. Of course, I usually have to suggest and help her remember where she put them and get her set up, but she will do those things for short time spurts. I think as they age, they must also revert back to the shorter attention spans like younger children. Unless mom is reading..I take her to the library regularly and get her about 6 books or so, she picks them out, some she has read before but since she doesn't remember it really doesn't matter. She will sit in her room in her chair and read for hours sometimes...gives me time to do housework and even yard work! I hope and pray you can find some things to keep mom busy enough to give yourself small breaks during the day!
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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!!!
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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.
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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.
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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!
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I also have the same issue with family members not helping out. My father who is 97 does not need hands on care at this time. However, I see him failing in many ways. I only have one brother, who calls less and less. I find myself talking about what goes on to my grown children and close friends. I don't have the answer either, and just odn't understand how everyone can be so selfish. My brother, who is retired, and lives 2 1/2 hours away only comes here 2 ro 3 times a year. When he does call he tells me about all the things he does and, places he goes with his second wife. Even the adult grandchildren are off enjoying their lives and don't visit. It would be nice if once in a while one of them would take him for a drive,stop for something to eat or invite him to their homes for dinner. I've also noticed that my father's friends don't visit any more either. It's sad to think when we are of advanced age that we basically are forgotten. Like others, this leaves me with all the caregiving duties. I know the adult grandchildren are busy with working and raising their families. The one person, my brother, who should show concern and responsibility doesn't. Not even verbal support on the phone. How do you make a grown man, a son, understand he's needed. This is a very nice home but some things are starting to need repair. I've mentioned this to my brother. When he does come here he sits like he's a guest, never offering to fix anything. Seeing my father who was always so active, slowly failing is upsetting. I'm sure everyone here is coping with similar issues with probably much more then me. Good Luck to all------
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I agree with geewiz you do have to grow a backbone. I am a caregiver for my folks who are still at home. We can sometimes be our own worst enemy. Both my husband & I work, we have a family, grandchildren and work an hour away from our home. That doesn't leave us much time. However, my sister who is retired and lives a shorter distance was running in to my folks every time they called until we finally talked and told her that she has to learn to say no some times because she has a family & extended family too that need her. It isn't healthy for the caregiver or the parents. My sister-in-law complains because my husband doesn't stop enough to visit their mom or come to the care conferences while she is there every night at the nursing home. His mom has severe Alheimer's and behavior problems. That's his sister's choice to be there. The nursing home nurses & aids are paid to take care of her and they are doing a great job. It's fine to stop in & visit once in awhile but to be there constantly isn't fair to them or his sister's family. I believe that families should have family meetings if the parents are at home and try to agree on care and other things that need to be decided but as with my own family that doesn't always happen. So we do the best we can and with lots of prayer continue on. I pray that you will be able to learn how to schedule other activities and use the resources available and take time that you need for yourself and your good health. Blessings to you.
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I have the same problem with my family... I have a brother who lives near by, he used to visit for the weekend every weekend, then just for the day, then every second weekend, then every third weekend... He now visits for a couple of hours 5 or 6 times a year, he never says anything to me about when he's arriving, he just turns up on the doorstep. He's doing this on purpose because he doesn't want to be left to look after his mother, while I skip off out somewhere.
He once told me "you love looking after mum". How I didn't smash his face in I'll never know. I was so stunned by his callous disregard for the actual facts that I was rendered speechless.
The sickener is, his wife had her granfather living with her (and her mother) years ago and she understands how hard it is, but even she doesn't seem inclined to help out!
Thankfully for me the System actually got it's act together a year ago and d'mother now goes to Daycare once a week and Respite every 6 weeks. But even at that I still find caring for her a grind.

You have my sympathies hadenough ((hugs))
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BlueByYou - When you say your brother "just turns up on the doorstep", you described what my sister who lives a short distance away does as well. There is no communication, no phone call. It's just like, BAM! Here she is out of the blue, just to "visit" for the usual hour or so, once every week or two! This allows me NO possible chance to even think about planning ahead in terms of what I am going to do for that precious hour. Heck, it takes me a good hour or two JUST TO UNWIND before even THINKING of what I have to accomplish during that free time! Thank God I have a different sibling who lives farther out and regularly comes in a few days a week to provide SOME relief, otherwise I would likely throw in the towel and announce that we're getting ready to sell everything, because the nursing home would be the next step.
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I have not had a vacation in 7 years, since I came to Texas to care for mother. I have ADD/ADHD/Autism. I have gone from being an artist and writer that could support myself, to a disabled senior with suicide on my mind more and more often. my church knows this, as well as mental health, and social services......I guess they are just waiting for me to go postal, so I can get a break in prison.
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chemistkat58...I feel for you, i have put in 8ys and "Vacation" is just a big pipe dream!! I have also gone from being a functioning happy adult professional to a depressed lonely individual having some very unhealthy thoughts at times...Like loading mom, the dogs n cat, and myself into the car and driving it straight into the river or of the mountain....fortunately they are few and I recognize that this is just frustration and then pass very quickly . My family and fiance deserted me long ago shortly after i took this on so no one to help me there. But I have told my friends that I dont know how much more i can take and it scares me...this just seems to drive them further away, rather than offering some help..So i try not to talk to them about it cuz i need my friends even if they are not compassionate to my situation at least i can step out for an hour n visit with them . When contacting social services for help they stated I have to be suicidal to get any healthcare benefits but if I tell them I am suicidal they will remove mother from my care....so there is no help there! The thought that i keep coming back to is "fake an illness so she could be hospitalized for a week or two"...she is not cognitive enough to pull it off tho....I then thought of asking her doctor to just do it, have her hospitalized for something?...but then what kind of trouble would i get into if she told on me etc.... point being our mind goes to some crazy places to try to get relief !!! hope this story at least can help you feel your not alone! Hang in there, you are doing a great service and god will reward you at some point!! That is my saving grace or I dont think i would still be here doing this job!!!
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Many thanks to all of u who answered my questions and for the solutions that some of you have tried. It just really helps to know that I am not alone. This is a good one. When I told my siblings that I was going to take a vacation and would be gone for about 8 days I was told that I was being irresponsible!! Funny since my bro and sis take vacations all the time. Sigh.....
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hadenough,
Nothing surprises me anymore. I live with and take care of my 97 yr old father.
He can be very difficult. The whole family, my brother, nieces, nephews, my kids are all adults and know this. I don't get any help from any of them. I talk to my sons and daughters-in-law about it. They listen but I know they're busy with working and their familes. My oldest son suggested that I get a Call Alert device so when I go out I can go and not worry. He means well, but all I really want is for them to invite my father to dinner, for a ride, to a diner for a sandwich. No one offers to take him for a week or even a day. I get the feeling when I start to tell them what is happening witlh him they just do not want to hear it. It's like "here she goes again." Yesterday I went to a early evening picnic. My father was busy all day poking around in the garage and yard. When I told him I was going he asked what time. When I was ready to leave I went into the den where he was sitting. He had his head back, glasses off looking forlorn. I told him I was leaving and he grunted. He's done this before, just enough to put the damper and guilt on me for leaving. I need to be with friends and laugh. I call it my therapy. So for your siblings to call you irresponsible is irresponsible on their part. Hang in there--------
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Immediately aftr my fathers death 8 ys ago I took my mom to live with me as I had just lost my job due to downsizing But during the first six months prior to thatMy Brothers who live out of there vehicles signed a false statementciting they had witnessed me beating my mother and was financially abusing her as well. I was investigated and cleared! I had to eventually move into their vacant home 2 hr away. When we visited two weeks prior to prepare for the move the oldest brother had moved into the parents house without anyones knowledge, He is a hoarder and unloaded all of his storage facilities into the home in order to not pay for them with rabbits living freely in the mess...I informed him mom was coming home n this needed to be cleaned up He then went filed a restraining order and eviction notice on me claiming he was exector of choice...I showed docs/wills to judge and he ordered my bro to vacate. I then at that moment decided to let him enforce restraining order against me if that would keep him away from me as well!!! I had to make a choice my mom or my brothers I chose mom n sanity! I have not seen or spoken to either brother since, I do not regret the choice!! And I had to empty the house into a storage myself pay for it and mail him the key...took 10 days alone in 105 heat mid july! He still responded with a harassing letter stating I stole his junk! I later I found out he opened a credit card under her name online, at some point, and charged 5k then refused to pay, we are still fighting that! A social worker who witnessed his poor behavior at the hospital with dad felt he was jealousy or inadaquacy cuz he is the oldest boy and I am the youngest baby girl... But I have always been the rock of the family...My anger lyes in the fact, negative energy is such a poor choice in the time we have...I MEAN DOESN'T HE REALIZE HE IS NOT HURTING ME, HE IS HURTING MOM,
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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!!
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My first time on this site. My husband has Alzheimer/Dementia since 2010, but is in good health otherwise. He refuses to believe he has this problem after all the mental tests, and gets angry that I believe his doctor. His family tends to live to their late 90's. My health is a problem for me. I have 3 stents, have controlled high blood pressure from medication, mostly controlled diabetes since my mid 30's, back problems walking, of course overweight, take a nitro type medication for my heart, and tire easily. He no longer drives since he misplaced his license, doesn't always know me, and still thinks his old customers will call him any day to have him do work for them. He doesn't like retirement and did not like a day program that I tried for him, all those old people he says.

What I do not know is when do I put my health problems before his. Then, how do I get my adult kids to understand that my health must come before his health at sometime or else the stress will cause a majorly bad effect on me. Two kids seem sympathetic, but live out of town. The in town one also doesn't totally believe in the diagnosis of the doctor for his father(we live with him by the way).
this is a condensed version of our life.

I know that Alzheimer's is a very individual problem in people, but there must be some guides for when the caregiver is physically as bad as I am and the patient is not. Am I a walking bomb waiting to have a heart attack in my situation? My doctors tell me to avoid additional stress. They do not seem to understand the stress his condition places on me. His doctor knows some of my medical problems, but he is my husband's doctor and his patient. What are other caregivers doing in my type of a situation? Thank you.
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Flowerangel, now is the time to put your health ahead of your husband's dementia problems. First of all, you are every bit as worthy of care as he is. Second, if you go under, how will that help him? And third, not only would your adult children miss you terribly if something happens to you, they would all find out in a huge hurry what keeping Dad safe and comfortable really means (and it wouldn't be pretty).

For your sake, for your husband's sake, and for the sake of your children (in that order) do what you have to do for your own health NOW.

From my own experience, many medical professionals are either clueless or not concerned about the major stresses on the caregiving spouse. (Obviously this is a generalization, but I know I'm not the only one who observes this.) You can't count on them to take the initiative to see that you get treatment and health guidance. Your doctor says to avoid stress. Is he or she a standup comedian on the weekends, because that is very funny, isn't it? HOW do you avoid stress? What resources can you contact? What suggestions do you have, Dr. Funny? Where can I go to find respite care?

I am very glad to see that you've already tried one thing that could help you -- adult day program. Your husband didn't like it. Maybe it is time to insist that he attend this 2 days a week. Maybe your local Alzheimer Association would have some other suggestions for you. Maybe you need to place him in a care center for respite while you address your health issues.

You could hold a family meeting to explain your needs to your children. (I included the adult grandchildren in our family meetings.) You don't apologize or get defensive, you just lay it out for them. Perhaps you ask for their suggestions but you make it clear that you are in charge of the decisions.

I would try to avoid getting hung up on the diagnosis. Focus on the symptoms you observe and what is stressful to you. It doesn't really matter if he has Alzheimer's or Syndrome XYZ. You are not stressed out because there is a label in his medical file, but by his behavior.

The airlines say put your own oxygen mask on first before you try to help a companion.

It is time to reach for the oxygen, flowerangel.

Come back and let us know how this progresses.
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Oh, and by the way, what many other caregivers do in this situation is try to carry on and shoulder the entire responsibility for the spouse's care and ignore their own health. Many of them die before the loved one with dementia. I hope you take a different approach!
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Do you have plans for his long term care? You will not be able to keep him at home, as the disease develops. It really sounds like you would benefit from a nice assisted living place yourself. I don't know where you are, but here in Tucson there are several nice places that you and he could live, in different wings.

You are right, that you may not survive him. What are the plans for him, then? (It happened in my family, so I speak from experience.) Please do what is best for you.
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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.
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Hadenough...it sounds like you finally "had enough"!! haha! Good for you!!
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Thank you for the update, hadenough!
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Woo hoo! Hadenough! good for you..
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It sounds like you really need some time to yourself! An adult day care can be a wonderful respite. My Mom goes to an adult day club while I'm at work and she loves it there! She was very nervous the first few days, which is to be expected, but then asked me if she could go more often! Even with Mom at day care when I'm at work, I still feel that I need that break from her. My sister takes her on Sunday's, but my brother will only stop in at my sister's house to spend a small amount of time with her. I think that Jujubean is right...some family members don't care and some are truly scared of the situation. Perhaps try contacting your local area on aging office to see if there is respite available at little or no cost, or if the funds are available, hire someone to come help. You deserve some much needed time to decompress!
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I tried a different approach and my my what a turn around from when I wrote this original post. My Mom was being rebelious, nasty, accusatory, just down right negative so I let her know in a very nice way if she got thrown out of this assisted living i had to find a back up place and we needed to do a tour. I think in her mind she felt if she got thrown out then I would have no choice but to take her home. Surprise!! Well I took her on a tour of a really bad place. I cried when I left there and my Mom said she wanted to throw up I told her if you get yourself kicked out of this beautiful place you are in you may very well end up here as this is the only one with space available. IT was like a complete 360. The next day my Mom called me and told me she was so upset after seeing that other place then she went on to say how the place she is in is really beautiful and while shes not happy about being there, she will get her act together and not rebel anymore. Its been about three weeks and I have had zero complaints. Now I just feel guilty because I see how depressed she is living there but the nastiness for the most part is gone.
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