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Dear Nikki, Thank you. I read your post and it is as though you & I share the same story. Mom & Dad were married 70 yrs before he passed. He treated my Mom like a queen. I never heard that sweet man ever raise his voice to my Mom. Since he left us in March, I've moved in with Mom. My house is next door with my hubby, my cats & my life....but one day I will go back home. I, too, am an only child. I'm so used to going when I want to go & now it is a problem trying to make arrangements for someone to stay as Mom, in addition to the dementia, had a stroke and is bedridden. Not too many people offer to stay when they know diaper duty is at hand. This is not the way I thought retirement would be.....for some reason I thought it was going to be the best time ever..

All in all, I look at Mom & when she smiles at me, her whole face lights up. It makes it all worth while. I smile at her and start placing kisses all over her face and she giggles......she knows she is not alone. She calls out for my Dad all thru the day and night.....I just tell her he isn't here right now because I can't stand to see the hurt on her face when I tell her he is in Heaven.

It is hard right now for sure and some days are better than others. One day I can cry my eyes out, others I keep busy doing something.....but this woman lying in this hospital bed took care of me for many years. She changed my diapers, she fed me, she always had my back & if anyone ever messed with me, my Mom was on them like a bear saving her cub.

I can do this...........I CAN do this! I dang well WILL do it........I owe her that and a whole heck of a lot more.
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Reply to Calliegirl
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It bothers me how I neglect myself and my life. I need to learn balance.
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Reply to margaretst
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Maybe it's not so much that they're living too long as many are not living with health. It requires a lot of sacrifice from one or more people when someone can't walk or do the things they need to do to live. There are many answers to the problems, but no one is effectively addressing them yet. End of life care needs to cost less. Caregivers need help. But most of all people need to figure out what causes the problems that come with age and do something about them. So much is invested in schools for the young and jobs for the working adults. Little is invested in caring for the older people. Sometimes I look around and it seems they are viewed as cash cows, with all their resources being drained and Medicare/Medicaid being heavily tapped into to provide care. Most people are not wealthy, so often there are many people like us who donate our own time and resources. Can you imagine what the education of kids would be like if education was handled in the way they handle elder care? Every family would be bankrupt and the kids would still not get the learning they need.

I also see that old people -- that will be us -- need to learn to be more flexible. I think the boomers will be more flexible, because their lives have been more mobile. I don't think that moving to a retirement home will bother boomers as much.

I do hope you can take some time for yourself to remember your husband and just enjoy the day with his memories. You do him so much honor taking care of his mother, but I know that is also an extra chain on you. All I can say is that you are wonderful. Your husband married a good one!
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Reply to JessieBelle
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Thanks JessieBelle.
Maybe that "something that is not right"...........is that people are living too long?
Dare I even say that?

I must tell you all that my husband was an awesome guy. And even though his parents were not good to him, he was a faithful son and so I will be a faithful DIL.
I love this CS Lewis quote:
"The pain I feel now is the happiness I had before. That's the deal."
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Reply to Marialake
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Maria, four years is still fresh. I imagine you didn't have time to grieve for your husband the way you needed to. I wish you could find someone to stay with your MIL so you could spend some time at the grave and visiting old sites you used to enjoy with your husband. I wish you could make it a day all for yourself without feeling hurried or guilty.

Everything inside of me knows that what we go through is not right. Something is totally out of balance in the world.
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Reply to JessieBelle
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I will add that there are some things the sib will do around here...but it is always one of those half ass rigged jobs...there is no way he would do that at his own home...and I don't want him doing it here, but on rare occasion when I leave him even for a little while, I come home and sure enough, he has taken a roll of duct tape and very tackily gone around the edges of the windows ON THE OUTSIDE and made it look like we live in a dump. when I pulled it off, it left all kinds of sticky gooey mess, so now I have to clean that off...thank you for creating more work for me dang it....he comes and cuts down trees that I do not want cut down even though I have told him not to do it...he mows over the leaves and cuts them into mulch even though it has taken me 2 1/2 years to finally have the lawn looking good again after all the mulched leaves in the root system almost destroyed our grass..in other words, does nothing I would like for him to do, have asked for him to do....but the list is endless of things he does that do nothing but create more work for me....gaaaaaaaaaack
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Reply to hope22
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Rudeness and lack of gratitude...AMEN and AMEN. When I started this, I honestly did not do it with the anticipation that I would have any help, I have not had any help for the past thirty years with any of their business. The sibling and his family, now on his second family, have always looked out for number and even when my parents would invite them and encourage them to spend time with us it was met with disdain and aggravation...it was not fun here, they didn't have time...they had to go to HER mothers, etc etc....even after my Dad passed, the sibling and his wife didn't even come by the following weekend to check on my Mama. I was here, like I feel like I have always been here. I remember that day, her going to the window all day looking for them, wondering where they were. She kept saying, "I know they will be here any minute"...they never came. On my way out of town that afternoon, I had to pass by the boat landing at our park...Sure enough, there sat their fancy ass vehicle, with trailer attached and of course they were off somewhere in the lake enjoying their day...seems they got over Daddy fast enough. Sometimes I think I hate them ...I know I hate her...(the sis in law...now than God the ex sis in law) but the current one is not much better...hasn't been to see Mom in over two years....almost 2 1/2 now.....although she drives within one block of our house on the way to their lake home (which used to be half mine til the brother threw a fit after Daddy passed and they got that too) I have finally started being totally honest about my feelings. I am hopeful by doing so I will get it out of my system...but the continuation of the non visits and then when the brother does visit, I get all kinds of remarks about the house...This needs doing, that needs doing, why haven't you done that yet??? He brought his grandaughter here (by marriage) not long ago and while playing with the cat, she brought out a dust bunny too....the grand daughter, who is old enough to know better...very rudely and snottily said "Good grief...what do you do all day" I just glared at her...my brother laughed. no respect from anyone is right. Thinking back I wish I had said "I do what no one else is willing to do all day long..what do you do????"
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Reply to hope22
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I forgot to add..........my husband's funeral was on Memorial Day weekend (4 yrs ago) so I am an emotional mess... re-living those days.
I went to the cemetery this morning to fix up his grave but I had to rush there -and then hurry back to MIL. I hate that pressure to hurry back all the time.
I felt guilty taking time to grieve at my dear husband's grave.
He should be here...............not her :(
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Reply to Marialake
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It's hard to go to the grocery store on holiday weekends because its a reminder of all the places other people are going etc. Today my house smells like poop and my big moment out of the house will be to buy thicker mil garbage bags.
I miss my freedom. I am grateful to be healthy but the clock keeps ticking........... and I can't be sure that my healthy days will not be ticked off by the time my MIL passes.
Sorry, just venting.
This is the twilight zone. ugh
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Reply to Marialake
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I think it is called living life for 2 (or more) people.
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Reply to JessieBelle
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Guilt is also a big thing for me. If I am working, I feel like I need to be with my mother. If I am with my mother, I feel I'm not paying attention to my work. If I am doing house work, I feel I need to be doing yard work or my own work. And on and on. And I feel like I'm not paying enough attention to my rabbit. A frustrating thing is that, though I work all day long, my mother says things like "you don't do anything all day long." The rudeness and lack of gratitude make me wonder why even bother.

Well, I'm off to the post office and then the grocery store. Everyone else has a holiday weekend. Here it is the same old same old.
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Reply to JessieBelle
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Guilt is a big problem for me. I am a widow and I care for MIL in my home but my office is downstairs.......so I operate our seasonal business from my desk. She left zero assets so I MUST work. When I am at my desk working, I feel guilty because I am not sitting upstairs with MIL all day. But seriously, if I were sitting there beside her..............there would be no actual conversation etc. Her only 3 sentences are:
It's cold in here
I want a cookie
I gotta poop
That's all she ever says. Yes, I try to engage her but there is no 2 way conversation. I spend every evening right beside her (with the tv) but she just stares at me the whole time.
So why do I feel guilty? Maybe because none of my efforts are making her appear to have any joy or quality of life at all. This morning, I put a blanket in the dryer to tuck around her (she likes that) and my dryer broke. Arrgh.
So, just like hope22 writes...............I feel like nothing is ever ever enough...
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Reply to Marialake
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Seems like sometimes, no matter what I do, how much I do, how well I do it, and how devoted I am to it...it is never enough....never...ever...enough......
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Reply to hope22
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JessieBelle..you know I had not thought of that...my grandparents all passed earlier on and so my parents did not go through the whole caregiving thing. I am pretty sure they would have, but never had to.....I will say the grandparent who lived the longest, because there were several siblings...ALL of them, including my Mom, took turns having her stay with them/us...but she was also pretty self sufficient all of her life until right at the end, also when all siblings helped my aunt where she was staying...Most families now it seems are smaller, and even when they're not, it still seems to fall on ONE person to have all the responsibility. I don't know what drives us on sometimes...I often wonder....but have no answers....
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Reply to hope22
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Putting your life on hold and not knowing if you will ever enjoy your own senior years.
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Reply to Labs4me
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Today it's the lack of freedom!

Tomorrow I will be adding to that!
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Reply to assandache7
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This is so true, hope. My grandparents all died when my parents were in their 30-50s. They never did any caregiving. My dad's father moved in with us a short while after my grandmother died, but my mother didn't want him here. He left soon. One time my mother commented to me that when she was my age she was still working. I told her that at my age she wasn't taking care of her parents. That made her think.
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Reply to JessieBelle
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The hour is late and so I am feeling the need to admit something.....and I am ashamed to admit it...for I do love my Mom..but....there are times, when, as Scarlet15 mentioned, my parents enjoyed their retirement. They both got to live long and fruitful lives...I am thankful for that...and then, right around the time I had just begun to feel like I had a chance at a life, boom.....now I'm in this for the long haul...and I'm not planning on going anywhere, but there are times when I think...is this fair???? My parents got to do it all...I feel like I have lived my entire life making sure my parents got to enjoy their lives....my brother never worried about it, he was living his life, getting married, traveling, having kids..going on all the vacations, ....and because he was living and didn't worry about Mom and Dad I always felt responsible for making sure they were not feeling neglected or lonely ...and I felt like if I wasn't here, they were disappointed...so I just never felt like I had a right to be a normal young woman...I feel like I have been old my entire life.....it doesn't make me angry, so much as sad....I have aged so much this past couple of years....sorry for the pity party....just feeling like that part of life that most folks have was practically stolen from me....
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Reply to hope22
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The one thing that I keep coming back to is, I am missing out on enjoying my retirement. My parents retired at an appropriate age and lived in a retirement community where they enjoyed days and nights of swimming, dinners out with friends, bridge club etc. When the outlived their friends I encouraged them to sell their condo and move to an Independent Living Facility. That was about 10 years ago. My father died a few years ago and now my mother is living with me, because she doesn't like being alone. Well. I do! I'm 66 and in good health but am chained to a life of taking care of a person who is bi-polar, has NPD and can do nothing for herself or won't. I keep thinking, what is the point of living if all I am doing is prolonging the life of a 94 year old who thinks she wants to die but is afraid to suffer. Her life consists of a series of medical appointments. Sometimes it just seems so hopeless and useless. So, I guess that's more than one thing.
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Reply to Scarlet15
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Sandyk ....totally understand. I had finally reached a place in life where I thought I had "made it"...I was about to start traveling, dong things I had put off til "later".......then.....life happened and later never came.....plans on hold...until????? at this point, I have decided I probably need to just ditch those plans as thinking of them now is too painful. I thank God every day that I am not and never have been much of a people person. I have been called a loner and I probably am, and for this situation that is probably a lifesaver. Thankfully I do not need a lot of "stuff" to be happy and another good thing, as I have either already lost most of that or am about to...I think I have finally settled in to living simply, and trying to make it through each day and finding something to be thankful for...I don't know if I'm getting out tomorrow or not. My brother has to work so he won't be here, life on hold, plans on hold, and holding on......
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Reply to hope22
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I read all these posts and we are all in different situations, but yet so very much the same. The loss of yourself, friends, a LIFE. My husband doesn't talk much, he doesn't know anything to talk about. Sometimes he'll say something crazy about a day at work or some such thing. I will be 60 years old this September, had just gotten my motorcycle license and was hoping to get an electric scooter and just have fun, you know? Well, I got the license but can't afford a scooter since having to quit my job to take care of him.

And even if I could afford one, when would I go? How could I justify leaving him alone to go out for a ride? What if something happened while I was gone? It's worse than having a baby. Home care is expensive, day care is expensive, he had no long term insurance, how do people do it without losing their mind?

I am getting out tomorrow, though. My daughter is coming to stay with him while I go to the March against Monsanto in Denver. I'll be home in time to take her to work. It will be nice to get out of the house and just talk to people.
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Reply to sandyk05
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I totally agree that no one who has never done this can relate to what we are going through. This weekend, one of my nephews, whom we have not seen in well over a year now, is "coming through" town for a visit with his dad...thing is, I know they have been in the area for the past week, the entire time visiting the wife's family and extended family...all of them much younger and in better heath than Mom...and probably me too at this point. Not one phone call, nothing...I have stopped looking for them period until they "pop" in ...(which I also hate....those dang pop ins) . Tonight my brother had called while I was napping while Mom slept because I have been battling a migraine all day. I didn't even try to have the phone where I would hear it...He left a message letting me know they are planning on coming by "sometime" this weekend. I don't care. I am done with them. They are been here there and everywhere for a solid week...I know because I have seen it all unfold on Facebook. they don't give a flying fart about us so the feeling is now mutual. I hate it for my brother and for Mom...But I am so over it. We are pretty much invisible to most folks now...and apparently visiting Mom and myself is just not on their radar of "important people to see".. very sad...
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Reply to hope22
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Sandwich you are so right about the same debates goes on as the ones mothers experience. I find myself not being able to relate to non caregivers. Most of my friends parents are much younger than mine so they have no idea what its like.
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Reply to toomuch4me
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isolation.....
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Reply to twopupsmom
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Judge Buddha, I so agree about no longer sharing your day. Father ends up somehow twisting it against you no matter how innocent the original story was.
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Reply to bookluvr
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ALL OF IT !!!!!
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Reply to ladee1
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Aside from all the annoying and hurtful behaviors my mom inflicts on me, the big thing is I miss the few good times we used to have together. I have been working at replacing her with new friends, having fun alone, doing things by myself and not having to share what I do with her. She doesn't care, is jealous, or uses whatever I say as an opportunity to put me down, so no more relationship. I am done. I serve the basic necessities as needed and I don't feel guilty anymore. Only so much abuse I am willing to take. Too bad. Mom used to be my best friend and confidant.
Now I don't trust sharing anything with her. That's sad.
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Reply to Juddhabuddha
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The thing that really gets my goat is how little support there is for caregivers. Caregivers could use assistance and services as much as the people they care for. If you don't have a massive network of very committed people with a lot of time on their hands to help you out, then you have a hard row to hoe. The house goes without repairs, as does the car. Your own physical, dental, and mental health goes downhill. It turns into a giant tsunami of disrepair, decay, and depression. A lot of people's financial situation goes into crisis. This is stupid. There has to be a better way.

It also ticks me off that it seems like caregiving gets into the same debate I heard when my kids were babies. The stay at home moms vs. the working moms. Just substitute the word caregiver for the word mom, and it's the same argument back & forth which solves no problems.
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Reply to sandwich42plus
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My father wanted my whole attention to be on him. He would get angry if I was talking to someone else and laughed. He would then treat me rudely. Even if I'm on the phone, he would talk loudly to me and didn't care. I would shush him, tell him to wait.. to no avail. By the time I hang up, I am so pissed off with him, I lectured him and then postpone what he wanted me to do for him. Trying to teach him the cause and effects of his action. So far it's working. But who knows how long it will work as he progresses in his road to senility.
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Reply to bookluvr
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Daughter52, my father is like your mother. If he comes to the basement door and calls me and I dont answer. He continues calling me. If I dont answer, Im on the phone. Ive told him this a million times.. I try to talk louder on the phone (the person on the other end probably thinks Im crazy) to indicate that Im in the middle of the conversation.So I have to talk even louder. it always ends in me storming up the stairs yelling "Dad if I dont answer, then Im on the phone !!!!!"
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