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guilt is an awful thing

Posted by falldowngobump (My Page) on
Mon, Feb 22, 10 at 9:55

Ill try to make this short and sweet, but I have the desire to get this off my chest before it grows into something huge. My 87 year old MIL lives with us, she has for 3 years now. She has mild/moderate demetia, is incontinent, is bouncing between a wheelchair and a walker,and requires a Lot of care due to numerous health issues. I quit my job almost two years ago to stay home and care for her when it became apparent that she was unable to manage, we were to the point that she was a danger to herself (kitchen fires, flooding the bathrooms, couldn't manage her mediacations, so on and so on) She is a wonderful loving woman. My husband (her son) works himself into the ground trying to keep our heads above water without my income ( and loss of my health insurance). We are down to the bone finacially strapped and stressed, but we are hanging in there cause we love her and feel it's the right thing to do. She is usually very sweet and tries not to be any trouble, but she cannot manage anything on her own. I do everything for her, bathing, washing her hair, rolling her hair, cleaning her when she has a accident, dressing her, making sure the proper medication is filled and given, making sure she is eating properly, taking care of the everpresent big "D" (decubitus ulcers). I do physical therapy, I entertain, I come up with puzzles and endless suggestions of something to keep her mind active---You get the picture, her care has become my life. My husband and I have been out together 3 times in 3 years. The rest of the family lives out of state so all this is on our shoulders.
Now, I know this sounds so petty of me, but I had my 51th birthday this weekend. My daughter made plans to take me to lunch and then some shopping afterwards (God bless the child, it was great). My husband sat with his mom so I could go. While I was gone, she apparently found some old phone books and started calling all sorts of her old friends. I don't have a problem with that, friends are great to have and a real comfort to her (they never call her, she may or may not know who they are depending on how she is doing). I was gone 5 hours, and by the time I returned, she hit me with this list of places I had to take her and lunch dates she had to keep and had apparently volunteered me to take her and all her old buddies out and shopping . All of this requires me to take her out of state, over an hours drive. (not an easy feat with an incontinent, at times very confused, 87 year old, wheelchair bound sweet little ole lady). Honestly, I have enough trouble trying to get her loaded in the car to get her to the Dr. She outweighs me by 38 lbs.
Now, here is where the resentment and the guilt comes in. I had to move heaven and earth to make sure she was taken care of so I could spend a much needed afternoon with my daughter on my birthday. I don't get many days like that and haven't in a while. My husband told me she wasn't thrilled when he told her I was out with my daughter for my birthday. I'm sure she felt left out but it was impossible to take her--we did the cake and icecream thing with her before we left--she was unaware it was my birthday. I don't have a social life at all, few of my friends call or comeby anymore. I guess I selfishly resent the fact that she feels like I have to now manage her social life and her friends. I HAVE no life here people!!! I hate being volunteered, I have ENOUGH to deal with on a daily basis without out all this. So...until the dementia takes over again and she forgets this, she will worry me to death. I have suggested her friends come visit her here, but no, out of the question--apparently I have to drive. Bottom line....it ain't happening and I'm not gonna start. I miss MY LIFE and MY FRIENDS and MY JOB and MY PAYCHECK!!!!!ok, now you can insert GUILT here. Thanks for letting me vent--I think I can face my day now.


Follow-Up Postings:

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RE: guilt is an awful thing

I am so sorry you are going through this. My mother began showing signs of dementia last year. She has not reached the point your mil has. What you have to say is a real eye opener. I pray I don't have to go down the same road you are travelling but who knows.

You definitely deserve to have some free time - if you don't take much needed breaks your husband will be faced with having to care for both you and your mil. Is there someone you could hire for a few hours a week just to get away to save your sanity?

Our parents are living much longer then past generations and this is presenting a host of problems. Ask yourself this. If this were a friend you were caring for and she proceeded to call people up with the expectation you would be driving her all over the country to visit them wouldn't you think that was a lot of nerve after everything you have been doing for her? You need to tell your mil you are willing for her to call a friend and have them up for a visit AT YOUR CONVENIENCE but that is as much as you can handle. If she throws a fit so be it. You don't need to feel guilty about anything. I believe there is a special place in heaven for people like you.


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RE: guilt is an awful thing

All we can do is what we can. Different for everyone. Important to know your limits.

Take "guilt" off the table. It has no place. In particular, do not allow others -- including your MIL -- to impose it upon you.

My situation is very much like yours except I'm alone with it and my 97-year-old mom doesn't do the stuff yours does and has nowhere near the issues yours does. In more than a decade of doing this, I've learned that a balance must be struck. That, too, is different for everyone. However, having struck that balance -- which includes my own feelings/sanity -- I do not allow others to interfere with it. From time-to-time this has involved being pretty strong with other family members and sometimes with mom herself.

Since you've accepted the "job" and its sacrifices, you get to set the limits. Unfortunately, you have to defend them occasionally. I encourage you to be open but strong about this. It doesn't mean you love anyone less. Do NOT do the guilt thing. Abandon that, please.


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RE: guilt is an awful thing

Thanks for your responses--sometimes I feel so isolated and having someone who is in a similar situation "validate" my feelings really helps. Most days I do quite well with all of this--she is usually a doll to deal with. When I start to try to plan something for "just me" and actually get to do it, it seems there is a price to pay and I melt down a little. You have no idea how much this site and the support of others have helped. I can melt down here and be honest and I don't worry about being an awful person for having said or felt it. I live in a very rural area and "help" is very limited.
Her close friends from home know the shape she's in. We went through a period when they would call her and she would beg them to come get her and then she would forget who she was talking to. It upset them greatly so I called them and explained the situation and gave them an open invitation to come visit her here anytime. We agreed it wasn't in her best interest to talk about or offer any visits away from home. These ladies are also elderly and I don't think they would know how to handle the memory loss, confusion or the limited mobility. Actually, they pretty much stopped calling her and just write her letters and send her cards. I only told her closest friends of her condition, I didn't feel the need to make it public knowledge to everyone from her (very )small hometown. I'm unsure how many people she called, I guess I'll have to wait till the phone bill comes in--they were all long distance. I'm thinking the friends who know will probably let the others know regardless.
At the present moment, she is in her room working on the new word search book I bought her yesterday and not a word has been said about parties and get togethers or shopping.
At the moment, the storm has apparently passed and I can maybe go back to my normal crazyness and stress. Turning 51 probably didn't help the situation--for some reason the thought of another year older really bothered me.
Thank you all for your support and kindness--pat yourselves on the back for me.


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RE: guilt is an awful thing

Natural as can be in these situations to beat yourself up about "not being able to do more" and/or feeling like "since so-and-so thinks I should do this much additional, I MUST do it" and if I don't I'm not a good person or not as good as I should be. That's usually where the "guilt" comes from.

However, that 51 years old thing should help you. You've been around a while. You pretty much know what you can handle and what you can't...and what you're WILLING to handle and what you aren't. YOUR OWN well being is at least as important as your MIL's. People that seem to demand that you be some other version of wonder-woman must be advised that although their help and suggestions are welcome, their demands and expectations can take an earlier exit. You deserve praise and support for what you've done and what you're doing.


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RE: guilt is an awful thing

Thank you all--somedays that "wonder woman" cape is just heavier than others! LOL


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RE: guilt is an awful thing

Excellent advice from asolo. Guilt has no place here--wave it buh-bye.


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RE: guilt is an awful thing

Hi - I'm not usually over here on this forum but I do have elderly parents to care for and I just need to say to you that you are an angel as well as wonder woman.

DO NOT HAVE GUILT. NO GUILT. YOU HAVE ABSOLUTELY NOTHING TO FEEL GUILTY ABOUT I have enough for both of us, LOL, but I somehow or other (don't really know why or how) have learned to pat myself on the back and not feel so guilty any more. I don't know exactly why, but one day I just had a revelation or something that said hey, you're doing a great job and you have nothing to feel guilty about.

And remember, don't confuse guilt with feeling sad for your mil - and for yourself and your family. I think when I finally realized that yes, I feel sad for my parents for the way things are for them now and that is not going to get any better - but it is not guilt and somehow that made me feel better about myself.


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RE: guilt is an awful thing

When I was caring for my husband I started having serious health issues and two doctors told me I was in danger of dying due to stress. Even with that I didn't consider putting him in a home until someone and I don't remember who, said "your life is just as important as his".

You are very good to be doing all that you do and I am sure if there is a heaven you will have a very special place there, but you need to find a day care or a care home for her before you lose your health. I think if your husband realized that 60% of the care givers die before the patient, he would agree.

When my sis found out I had put my husband in a care home, she started shift our Mom's care on me. I told her I love Mom, but I can't do any more for anyone. My Mom at 97 died in December, she still lived in her own home, alone and was raking leaves the week before she died.


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RE: guilt is an awful thing

60%? Oh wow, I had no idea but I can see why. I've went from one blood pressure pill to two and my Dr. has advised me to drink a glass of wine before bed to help with the stress. Thank you all for the advice and the support.


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RE: guilt is an awful thing

I admire you so much for doing this for your MIL. Three years is a very long time. It sounds like it has comsumed your life at this point. I would sit down and have a long talk with your hubby and then all the family. Lay it all out and tell them you have to have help amd quickly. It is unfair for you to have to take on all of it yourself.

If it were me, I would look into putting her in a nursing home. My Mom and mother-in-law loved being there. I went and visited often. My mom loved when I went to go play bingo with her. They have so many things for them to do.
Stand tall and give yourself a good pat on the back. I am sending you a big "hug"..

Doing this does NOT mean you don't love her. You need to look out for yourself and your family. I bet your husband would love have your help, too. Don't let anyone make you feel quilty.. You have done more then you share..

Let us know how things are going. We really do care here.

Susie


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RE: guilt is an awful thing

Susie,
thank you so much for your kind words--and the hug!


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RE: guilt is an awful thing

Isn't it strange how the caregiver feels guilt and the rest of the family goes along with their lives, just because they live further away, does not excuse them.

Years ago I gave my Uncle's wife a bouquet of flowers and said Thankyou for all you do for my Aunts(my dad's sisters). She looked at me kind of strangely and said I do it because I love them, and I felt put off and hurt.

Years later my sister-in-law said to me "We really appreciate all that you do for Dad (My Dad)". That was when I realized how my aunt felt. I was taking care of my Dad because he was my Dad and I loved him and felt I wasn't doing it for them but for him.

Some of us feel the duty is there, usually it depends on how close we were to them in our lives.

I worked in the field for years as a Home Support Worker and saw many things. Some devote themselves to their loved ones and others practically ignore them. And it is the ones you would not think who take the responsibility the most. Remember it is not a crime or shame to have to put them in a nursing home, or to ask for help.

Is there any home services for personal care or respite care in your area or even a friend who would go a sit for a spell.

How about, those family members who live away, I had a client whose family came for vacation, stayed with the loved one and let the caregiver go away for a week or so.

If they come to visit leave them there and do your own thing and then they will realize you need help.

Remember, as I have said to many, no one can do it alone 24 hrs. a day. You do not have to make yourself a martyr, you are still a person with feelings and a life ahead of her IF the stress does not get you first.

Not being mean, just telling it like it is.

Take care, Betty


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RE: guilt is an awful thing

Betty,
Your words were not mean at all. It's so true. What I do everyday is not for the faint of heart, but I do it BECAUSE of my heart. I do love her dearly. Thats where internal conflict sometimes comes in. It's difficult to deal 24 hours a day, 7 days a week, and nights too. It can be overwhelming and on occasion I do have that "please help me I'm drowning" feeling.
I don't do this for the family--I do it for her--and even with all the stress and crazyness, I would do it again. I feel in my heart it's the right thing to do...for me and for her.
Yes, the other family members live states and many miles away, and the phone calls have become fewer and farther apart through the years. Although my MIL is confused much of the time, she is aware of this and it hurts her and I hate that. She doesn't deserve to be forgotten by her family. She often tells me "out of site, out of mind".
She drives me nuts, she frustrates me, she stresses me, but believe me, there are as many or more good things and memorys that we have shared with our time together. And when I'm not going nuts, I feel blessed to have her with me.
Thanks so much for your post.


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RE: guilt is an awful thing

Falldowngobump, what an incredible loving person you are.

The important thing is for you to have really good support and it sounds like you may. Strong people end up bearing most of the care giving and that makes sense. Hearing your love for your MIL doesn't surprise me either. She can not give you what you need back but your other supporters, husband,daughter,freinds must rally around you to give you the strenght need to be there for her. I've hear it said take care of the strong so that they can contunie to take car of the weak.If you allow them to fall then who will be able to. Good luck stay up and take car of you too. No guilt needed.
You are wonderful


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RE: guilt is an awful thing

Hi,
I'm waying in from the deep south. All my life my parents who were both over 35 yrs older than me. (I have 2 brothers and a sister, older than me). Told us all that we didn't ask to be born and didn't owe them a thing.

Right....
My Mom's heart has acted up since I was 10. But basically she was healthy up to her 64th birthday. A total of 14 heart attacks of varing levels have occured since. I was single during about 5 of the years after her first attack.
I took off a whole year to care for her after the first so she wouldn't be put in a nursing home. I love my Mom dearly.

I am 49 this year. Married my late husband(not my first marraige) when I was 36. 1 year after we married he had 3 strokes and 2 heart attacks, the same year both my parents had open heart surgery.

Guess who was elected to care for all three at once? I love them but do feel that my siblings should have helped me out some. My sister; also a housewife said she couldn't help. and the 1 time she did come to help...LOL. while I was filling the RX's; my sister went and bought Mom some church's fried chicken. Where was her mind? I walked in just in time to snatch the chicken box out of her hands. She and her family used the weekend to visit their friends instead of visiting with Mom. After Mom's next attack, when she called, Dad said that if she was going to come and help with Mom she was very welcome. But if it was going to be a repeat of before. 1 hour of Mom visit, and 3 days of them going friend visiting and tourist stuff; no thanks.

My oldest brother who is retired, replied that he and dad didn't get along. My other brother didn't relate to the family for the last 25 years of his life.

Long story short. I spent 7 yrs being caretaker to my husband until his death in 2007, during which;
In 2007 both mom and dad's health went to pot(open heart); COPD,diabetis, asteoarthritis, numbness in limbs..

Dad got a blockage in his intestines, supposedly a 2 day hospital stay. Instead it resulted in a 10day stay that ended in his death.

so two of them are now dead. And Mom requires someone with her round the clock, as now her nerves are shot and she shakes and cries alot on top of all her other health troubles.

I have no family that will help. Her friends are her age and above; my husband is dead. And we're living on $1000.00 a month.

I have a government phone that she calls me on if I'm gone very long; she checks that I haven't had a wreck or some other calamity.

I love her, I loved my Husband and Dad. But never thought I'd be widowed and total caregiver starting at 46.


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RE: guilt is an awful thing

Bellashere,
I'm almost speechless here, Bless your heart you certainly do have the weight of the world on your sholders. If there was ever a woman who needed help and support, it's you. It's is so strange (and many times SO unfair) how doing the "right thing" for those we love becomes so overwhelming and just takes over. Your family should step up---although in reality you and I both know that probably isn't gonna happen. I wish I had some magic words to help you out and lesssen your burden. All I can say is that you must be a wonderful person for taking care of your family. You need a wonder woman cape of your own. God bless you and I wish you well. Keep us posted please, venting stress on this site has helped me so much. Thinking good thoughts your way.....


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