Why do I feel alone in caregiving?

Golflady, yes, those siblings are either sitting around thinking/not thinking or maybe just subconsciously assuming, "whew, now I do not have to face the sad decline of my loved one, because she (you) has got it all under control - or they truly do not care.

This IS the hardest thing most of us will ever face.

You can't make someone care if they really don't, but sometimes you can make them grasp the consequence of their failure to help and failure to deal with reality. I wish they could feel the impact of your raw emotion that you have so cogently expressed...

I'd print off this thread and mail it to them, probably anonymously, as who cares if they know which one is you or not.

And I'm so sorry you are one of the many who get dumped on. There ARE families who pull together, maybe not without conflict but together; its just that not as many of those folks need to vent on here as badly as those of us who are only children or might as well be.

Every day I get more disgusted with how many caregivers ( and the person they care for) just get out right abandoned by family. I have 4 siblings and to be so ALONE in the care for my mother is the WORST thing that has ever happened in my life, even worse than death. I have grieved the loss of my family as it used to be and will probably never talk to some again in my life. Why would I. If you abandon me in my worst moment why in gods name would I want you around for anything else ??

bhjos and Annie, I know what you're talking about. I work from home. It is so isolated here, because no one visits. I've thought about inviting people over to try to make things better, but my mother likes to sit in her old ragged pajamas all day long. She looks a mess. She doesn't want company, but then is upset because no one comes to see her. I know the company she wants to see are her sons and family. They are the big blank spot in her life. I'm here all the time, but she doesn't seem to like me much. It makes me miserable to spend too much time with her. She watches The Waltons much of the day. I think they are like family to her. She probably wishes that she had family like that.

One problem I have is that I have so much to do here, working and taking care of the things around the house. At the same time I have the need to get out and be with people. Often my own work goes ignored because I need to get out. I think of how much better it would be if I had my own family about to keep me company so I wouldn't have to go out looking for someone to talk to. I don't need a lot of people about, but living alone in this house of despair is more than I can bear every day.

People talk about how rewarding elder care is. I mainly see it as lonely and depressing. I wish things were different, but it is what it is. I just try to stay happy, no matter what I'm doing. Sometimes that works. Other times I just get angry that it has come down to this.

I am a caregiver for my elderly mum who has many physical problems and has also had mental issues with depression. The tablets she has taken over the years have left her emotionless. She doesn't laugh or cry, doesn't have any opinions on anything and does not know how to converse. As a result nobody visits her and I am her life. Unfortunately I am not married and my friends work full time, so are not available during the day. The isolation is the hardest thing of all to deal with and I find listening to the radio such a help. I listen to community channels on my internet radio and actually call in to phone ins sometimes.

I feel for all of you who are isolated and maybe there should be a radio show devoted to carers who are having our sort of problems. Take care everyone.

I have been handling my husbands worsening dementia alone.. I have so much anger, I didn't know where it was coming from. I suddenly realized,late last night, that I was angry because I wanted everything to be the same as it always was. I started crying with relief. I know now I need professional help to get through this continuing process. I shall begin that journey, finding a therapist today. Wish me luck and thanks for a place to vent.

I am caring for my husband who has a mild cognitive impairment. Unfortunately, he was a mathematician who can no longer do math, read science magazines or even watch a movie or long TV show. It has changed the whole way we used to live. He has trouble following conversations so he often asks me to stop talking to him. He rarely touches me, thinks I am trying to help him walk if I want to hold his hand. I try to be affectionate to him and he accepts it sometimes, especially if I tell him that I'm the one who needs the hug. We are going to a counselor who tries to get him to be more responsive to me, and it might help for a day or two. I've tried to make it a joke - I won't let you go upstairs until you give me a hug - and he usually will.

You need a break!

Burnedout2, I am sorry no one has responding to your post. I doubt it was done on intentionally. For instance, I am just now seeing your post n I have been sick for a couple of day so I have not been on this site for those two days. Everyone else's situation is different too. It does help to be able to know a little more about your situation n some background information in your profile area so that we understand more. Here is a 24/7 hotline # service @ the Alzhemiers Organization 1-800-272-3900 to talk to someone that can help when you are at a crisis n just need to talk to someone. Sometimes, just talking to someone can help too. I hope everything is going okay with you n it would be nice to know a little bit more about you n your situation.
I hope everyone on here are able to have a blessed day.

My heart goes out to those feeling isolated and alone as the caregiver. I share that as well. At first my husband did not understand but we have a strong relationship and he has come around to being a good support.

For me it was best to tell him that while "we" are in this together that he is really at work and this caregiving thing is truly just "me" alone doing this. He gets it. I also ask him not to lecture or try to fix anything... that I need hugs and understanding from him.. a shoulder to lean on and to know that he is on my side and in my corner. He has really gotten good at it. He says little but ALWAYS listens and gives me hugs.

It really helps to see a psychologist. REALLY HELPS. The one I have seen off and on for the past 5 years or so actually has alot of experience in geriatrics and it is very helpful. There is no way to pull a good therapist out of the sky.. you just have to meet with them and get the right feeling and know they are the right one for you. I would highly recommend this. Most insurance plans have generous coverage and many counselors have sliding scales.

I have cried a million tears, had anxiety attacks, made myself sick and more.. there is no easy way. I think to myself.. Wow! I thought life would be so much easier when your children grow up and you are nearing retirement. However, I never thought about the situation I am in now. It's tough. It is a lonely road so seek comfort from a good friend, a counselor a group or online forums. It really does help. Also journaling helps you to vent those feelings. For a long time I felt guilty feeling the things I have felt. It took alot for me to join this forum and be writing in a public place but I have to protect myself.

Self care. Take care of you! The more you try to be good to you and allow yourself to know that your feelings are natural and normal the more you will accept it in yourself and things will get a bit easier. This will never be an easy road but I am proof positive that you have "heal yourself" alot. I am light years
ahead of where I was with this a year ago.

Chin up, put on your big girl panties. We are women! Hear us roar :) Hugs

Cindi, sorry for your lost n especially when it comes to one of your own children for that is a lot. I too take a low dose of anti-depressant n taking care of my mnl. Hubby tries some but like u mention,"You still feel alone." For one thing, I know my hubby don't do half as the stuff I do for his own mom. Of course he is working so I kind of take that into matter. Out of our17yrs of marriage, I have not been treat as a daughter-n-law by her n have no idea why not. At least now she will sometimes say that, "She has no idea what she would do without me around." That once in a blue-moon, yet, at least it makes me feel somewhat an approval person for her or a used person by her. I guess because women r suppose to be more emotional so we r suppose to be able to handle stuff like 'caregiving' better than the men. who knows?

Fancicoffee, It's natural to feel the way you do about your husband. I am truly sorry this happen to your husband since the brain surgery. I hope U R able to make time to see that counselor. You probalbe feel this way for U R a caregiver, a worker, a provider, n yes sometimes u may feel like you r a babysitter. Some of us have some of these feelings as well n that is a lot to take in n try to handle. Especially all by yourself. Just remember to breathe n try to take time for yourself even if it is out in the yard with the dog. If you have someone u can call n just talk to a few minutes, that will help as well n stay on here for support for it has helped me a lot n still does. You r only one person n U can only do so much for U R only human. so vent online if u must for we all have several time here as well. Hang in their n keep us posted. This place is like a family here for me n maybe it will be helpful too you as well. You are in my prayers.

Sunshine, you gave great advice to MsTish.

MsTish, sometimes we do make promises to others that we cannot keep n you are NOT selfish! don't even think that way again. You may want to sit down n have an adult talk with your husband about what is " ALL" bothering you. However, u may also may want to be prepared to make sure you have a way out financially if you ever decide down the road to make some changes for your own life. Then, maybe he is just talking his feelings out to someone else for you only know what is truly going on with him. Don't jump to conclusion until you r sure about your marriage n the situation n that you have a way out if you need to go on your own. That is his mom and therefore he should be taking on some of these roles as a caregiver! You are not the one that will be putting her away for it is his mom. I don't think anyone realizes how much it takes to be a caregiver until they r actually in their own shoes. Only you know what is best to do in your situation with your husband for all we can do is try to offer some advice for we don't know what is best for you. Only you know what is best for yourself n let him worry about his own mom for a change. Do you have any friends or family members that u can call n talk or get away a few days so that hubby can get the a taste of what is to be a ful-ltime caregiver n just maybe he will appreciate you more. Keep us posted.

I believe your mom-in-law would understand, if she has the ability at this stage of her life. She would not want her son to treat his wife with such disrespect as he does. Nobody should have to be trapped in an abusive/selfish relationship and, if it means mom-in-law going to a nursing home, there are worse things out there! At least she would be cared for, and you should feel proud that you have given of yourself for the time that you did. Sometimes all we can do is all we can do . . . and don't expect any more of yourself--your mom-in-law wouldn't put up with such treatment and your husband needs to focus his interests in another direction--maybe he would if you were not there to enable him to run around. I am sorry you are in such a hurtful place, but you know what you have to do to respect yourself. Love and best wishes.

When I point out the age of a post, it is just intended as a courtesy. Often the original poster is no longer active on the forums or their situation has changed. It may be best not to expect a response from them. This does not mean you shouldn't give your views -- just that original poster may not be reading them.

Burn...You did just fine. Me and many others make mistakes all the time. Don't worry about it. Wonderful people on this website. You will find awnsers i'm sure.

Many of these post are older, when someone answers them it brings them up again on the recent activity list, which imho is a very good thing. If people didn't get to see and answer older questions then what would be the point in leaving them on here? It gives us something fresh to look at. New point of views, that's one reason a person can find sooo much information on this website. New people have new things to add all the time. For some reason when I started this thread someone let me know it was old to, but I was responding to something that pertained to my situation, so i"m glad it was still on here. I just ignored the whole "this is an old question thing" they are trying to be nice and helpful. Please do not be insulted and go somewhere else this is a wonderful website, with lots of information, and a whole lotta people who care about one another.

FYI
You are still postin on here so didn't see dates, boy hope u got that awful mess for you straitned out!!

Hi this is burnedout2 I JUST sent in my vent re: "Why do I feel alone in caregiving"
I was kind of nervous as this is the 1st time I've written and the 1st sentenceSHOULD have read"In the last monthe I've LOST asister& vry special brother etc". Thanks

In the last month I've love a sister & a very special and only brother. My family do not & have no intention of truly forgiving even if one can't forget. I have a daughter that "keeps the pot stirred" regrdless of any circumstance. My oldest daughter has terminal cancer, I care for a handicap (stroke) husband, & as I put it "then there's me." We live in a small community that is clickish, I've contacted the powers that be (especially when I've come home from serious operations) knees, roto cuff, heart, bowel obstuctions, etc. The came for an accessment & said I'd be contacted within days. Three weeks later she called to say they didn't have enough people so there was no one to send to help. My family lives 2 1/2 hrs away. My husbands family had to "consider" visiting their only brother 1 day a month & take him out for a bite, drive, etc. (at my request). 3 weeks later they called to say it was to far to come & then said "what do you do with him if it rains?"
At that point I lost it a basically kicked them out of our lives. When I asked them the gas was expensive & I offered to pay for it, but I really believe they are the most self centered people I have ever known or probably ever will. They all would have been here if there had been a very large sum of money (wages?) involved.
You bet I get lonely, tired, frustrated, & have learned that some of the people I thought were friends run the other way when they hear something they don't want to. I have the right to say "I don't feel like going there". especially when it gets so personal even what I call dictatorial.
My husband is not care center - yet. The only answer I've gotten from any source is "get more help". I would give anything for 1-2 weeks just here at home getting some jobs done so I can concentrate without any interuptions.
Also I should in fairness tell you my husband is a retired Navy Chief of 22 1/2yrs. He has become withdrawn, swears like a trouper too, refused to take a shower but keeps himself extremely clean, says he's afraid to get in the shower. (I know 1st stages of Dementia). Every day is the same & I feel 173 instead of a up and going 73 yr old. I'll take any suggestions that have some validity to them as I think I've heard everything there is to hear.
Forgot to say he is a veteran, will not register with any Vet Group, will NOT go outside except on Tues. AM when he and his uddy go out for BIG breakfast & he's also diabetic. His days consist of eating and sitting in the lift chair watching ANY kind of sports thats on TV's (3) old or new. People tell me "just go someplace, he can do more than you think". They are right - to a point but ONLY to a point, they have not lived here and actually know the other side of this prediciment.
Thanks for letting me vent, I will try check this site often but it's usually later at night because I don't have much time otherwise. I will THANK YOU in advance.
I hope you all have a good day. Burnedout2

If he has had brain surgery he may not be able to be the person he was before the surgery. You need to have a physician who deals with brain injuries rather than
a family doctor. If your husband is not in counseling and/or therapy you should explore this avenue. Support groups for families and for patients are available. Go to separate groups - one for the patient and one for the families as the support is different. Check online - many resources available there as well. I encourage you to find a good support group where others are going thru what you are experiencing. You are not alone - I promise you. Sending you hugs!

Just FYI, Kelly, this thread is about 3 years old ...

My heart goes out to you. It sounds like you had the life you wanted, and loved until mom-in law came to live with you. What I don't get is why did your husband check out of the marriage when "his" mother uprooted your life together? Have you talked to him about the way you feel? Maybe if he understands how your feeling about everything he may make more effort to help his mom, and his wife. How old is his mom, and whats her diagnoses? I truly hope things get better for you, and home life. Their are alot of resources, and visiting this website was a good step.
It takes time, and the adjustment you have made for your husbands mom is very commendable, but he really needs to help more with her, and support you. Talking to him could help. KB

msTish, what a difficult and trying situation you have with your mother-in-law! I am sorry that your caregiving journey is so trying.

msTish, Im sorry about your situation. It seems to me that your husband should speak to his mother. It's his mother, so I think it is better to come from him. I would hope that he would talk to her and let her know that it is not ok for her to talk to you like that. You deserve respect. You do diserve friend and your husband and you should of gone and had a great time. You have to take care of yourself and do things for yourself. It seems like her manipulation and control issues kept you from going out and she kind of got her way. I know that you were thinking about tomorrow and how difficult it would of been but tomorrow can handle tomorrow Sometime things have to get worse before they can get better. It seemed like you had perfect opportunity to go with all her family being their. I probably would made the same comment when she wanted to go to bed. I wish you well and will keep you in my prayers. is4031

hi everyone, been days since i've even looked at these post, seems most of us are doing ok, What a great thing... Me had arough one and i need to know what anyone else would have done in this situation.. after i had shopped. paid, prepared, and cleaned up(still caregiving myself through it all) husband and i thought it would be nice to go visit friends christmas night.Siblings all were here playing games and such, also agreed that it would be fine.Mom on the other hand had a nervous break down. Screaming, how ignorant and rude of me to have all these geust(her children) and think it would be ok to leave. She tried to knock over X-mas tree with wheelchair. Her family stuck up for me and told her i needed friends too but she would have no part of it, the funny thing here is not mad at my husband(her son) Isent him off with my own personal regret, i feared leaving because i knew how difficult the next day would be when it was just her and i.. Everyone was so mad at her they wouldn't talk to her which in turn made me feel bad. until 1/2 hour later at 6 pm (bedtime is always 9pm) she wanted to go to bed.. I said NO,, you have geusts and that would be rude. She then had the nerve to ask me what kind of people brought up a girl with such low morals and values.. I can't get this out of my head these words hurt to the core of my heart. I was raised in a very Italian home..Very traditional very loving very everything..Her life was lived with greek alcoholic, very emotionally abuseive husband. my parents never uttered a cross word to each other, catholic ya know should i have left, should i not be feeling this way, what the hell is wrong with me that i can't seem to stand dup to an 83 yr old wheelchair bound greek woman? thanks for listening anyone i do feel better writing about. And also 2 wakes, 2 funerals 2 hours inbetween to much It really sucked..

Sometimes, we husbands need a wake up call. As a husband, I know that I need to give my wife the love and effection that she needs. Sometimes we get into a phase and we might need a wake up call. I also am the caregiver and no how hard of work it is but unless someone has been a caregiver, they would never know that it is probably the hardest job out there. It is physically, mentally, emotionally, and to some spiritually draining. It is a 24/7 hour job. You wives deserve to still be loved by your husbands and even 100 times more if you are a caregiver for him or his family. Sometimes we really don't know how good we have it, or how much someone really does for us, if they don't or have never had it any different. I would always suggest talking but sometimes that is't enough to get someone's attention. Taking sometime out for yourself and giving him time to think and or deal with the problems can really put things into perspective.

merry christmas eve to all. I finally got a chance to post and say thanks for the kind words... Crazy as its sounds i have agreed to dinner tomorrow for all 18 of them that are never here, she is being difficult because i always use the wrong pans or the qwrong spice whatever, that i can deal with. I gave husband choice. helping or leaving.. he's decide helping at this moment, for how long i do not know. I want to make the a very special holiday for everyone my geuss is this is her last. I wantTO BE HONEST WITH THEM ALL. letting them know i can not do t his alone. I m mentally drAINED AND I'M NOT SURE WHERE MY MARRIAGE IS. I have also lost 2 uncles in the past 48 hours so my situation seems bleak at the moment but i know i'll get through. I'm hoping one of the 18 family members will step up for me on FridAY AND SAT. so i can attend both these funerals. If not i'm sure my uncles, both religous men would understand, cause i knoe there's aplace in heaven for all caregivers, Thanks again for not judgiing my last very personnal post and my you all have a safe happy holiday. hugs,, sandy

msTish, you have kept the spirit of the promise. No one can guarantee that a person won't have to go to a care home. It's best not to make the promise, but we often do, and we believe we can handle it forever. But the time comes when we need help.

You are anything but selfish, msTish. You need to take care of yourself, and that may mean a nursing home for your mother-in-law.

And Fanci - your isolation is natural. Isolation is the hallmark of the caregiver. That is one reason online forums help - who has time to go out to a caregivers group? We've had many in my area fold, not because people aren't interested, but because they can't get away. Please keep coming back and talking. We can't change anything physically, but we can listen and understand.
Carol

msTish,
I agree with sunshinecaregiver. We have all made promises that we cannot keep. When the promise was made it seemed like the right thing to do, but when confronted with the reality, it isn't always possible to keep the promise. Do what is best for you and your sanity. Believe me, we are all dealing with caregiver issues and can understand what you are going through. Good luck to you!

Your selfishness??? From your post, your husband is the selfish one. You are making perfect sense to me and it also sounds like you already know the answer. Sometimes we make promises to others that we cannot keep.

last night my wonderful soul mate had a chance to be with me for a few hours alone, instead, chose to leave with a friend.. I called him and no answer. This morning i look on his phone (yes not right of me i know) But find out he had been talking to his 23 yr old blonde friend. When he was not answering my calls he was talking to her.. Did I mention he is 50. This happens alot that i sit here all day with his mother and then at night also, because he needs to get away, who's frustration do you think he's dealing with because there's a great big part of me that says certainlly not mine. I really feel he does not care about me. I am here taking care of his mother and he's talking to another young girl. I need to run away from this whole situation and never look back. What i hate most is that i promised my mom-in-law i would never let them put her in a nursing home unless absolutly nessecery. Does my selfishness count for that.i am sorry to all this is a very personal post i hope its ok, thanks all.....

msTish,

My husband, also my soul mate, is my best friend but over the last few years sometimes I've thought "he just doesn't care; I have to do everything while he watches tv every minute he's home." For 12 years we've lived together and worked together 24/7. Yesterday I came home from work because of blizzard starting here in the East only to find him leaving for work! He was even leaving me alone during blizzard -- I was hurt and told him so. But then he noticed I'd been crying (all day yesterday during work); asked "what's a matter, baby?" and sat down to listen. I have to admit I was pleasantly stunned -- I was really starting to get angry with him for being so "non-caring" about me and my situation.

msTish, your situation sounds a bit like mine. After reading your last post it struck me that maybe my husband is suffering too, losing parts of his best friend, his soul mate to her misery. I think maybe my husband's absences -- like your husband with his friends, maybe? -- might be HIS way of coping with all the turmoil going on around and inside of me? I asked him last week "why are you snapping at me? Are you angry?" He answered "No, just frustrated."

During the best of our times together, I thank God for my husband's love, affection and caring, gentle nature. Now, during my "worst of times" (it seems, right now) I know I just have to trust that his love for me has not changed; that he won't abandon me. While I'm crying, getting depressed, feeling anxious, lonely, he is coping in a way that's acceptable to him as a man. If that sounds sexest, too bad, because it is the truth: my husband was raised not to cry, not to show emotion, to "go out and be the breadwinner". And that is what he is doing, being "a rock". My rock.

msTish, It sounds like you want to run -- again, I can identify. I want to LOSE my family completely right now. I fantasize that if they all disappeared I'd be quite happy but know that isn't what the reality would be. And my husband is the first one to point that out! For you I wish you could lose your mom-in-law but I hope that you can get back your soul mate.