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Two and a half years now. Thought I was good at this stuff, but now finding I am on my last leg or so it seems. Two and a half years of little to NO emotional or other support, very few breaks of any kind and the ones I do get I have to do so much getting ready for them I am too tired to enjoy them when I do take them. ie....I have ONE person who is willing to sit with my Mother so I can on very very rare occasion just get out of the house...While a sweet enough person, and thankful for any help, this person comes prepared to plant herslef on the sofa never to move again...forgets to feed my Mother, unless I contstantly have to call her, I have to fix meals for HER before I leave the house, have to have the coffee made, forget asking her to change Mother's diapers and when I get home, I have to fix something for supper, so all in all the break is really not worth it to me...Mother has become totally bedfast now and since that time (three months ago) although she was totally dependent before that, but now bedfast...so daily problems with constipation...Enemas, suppositories, stool softners, laxatives, massage, repositioning ...NONE of them work...I have to almost daily literally go in and retrieve the poo. I have a fairly tough fortitude but these daily mining expeditions have left me feeling sick, upset, weary, you name it. My life is now feeding, bathing, changing, mining, feeding, bathing, changing, mining...it never ends...it never freaking ends....I don't want to see anyone, can't stand to hear the sound of most people's voices anymore, have no interest in anything anymore and have given up on trying to look decent...I am so totally and completely exhausted....Mother will turn 90 soon and I was going to plan a small party for just her siblings. Very quickly they began to take over and began turning it into a bring a dish and all of your extended family and come on and I put the brakes on immediately and now will be planning something very tiny for just her, myself and my brother and perhaps a couple other folks..that's it....Am I just a hateful "b" or are people just stupid...I will never be the same after this...

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Does your mother have any funds, pension, etc, that can be used for in home care; or dare I ask, are there funds or public funds for placement? It really sounds to me as though your mother is passed the time when she can be handled by family, volunteers and regular folk. She needs professional nursing care; she needs carers who get breaks and respite. NO ONE CAN CARE FOR A BEDFAST PATIENT ALONE!!!!!!!!!! Your family clearly has no clue what you are dealing with. Can you invite them over and leave for a day or two?
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I agree. When someone becomes bed bound it is time to place them in a NH. Caring for someone who can't get out of bed is nearly impossible as you are discovering. You know it's not going to get any better.

You can change and rebuild your life. You're not a b***h but most people aren't stupid, they're just unaware. No one knows what a caregiver goes through unless they've done it themselves. The lady who comes and plops herself down while you get out? She doesn't know any better. She thinks she's helping. Unless you've specifically and explicitly told her, "Please make my mother lunch and then change her, clean her all over very good, spread barrier crème all over her bottom and then redress her beginning with the Depends" she doesn't know what you need. That's one lesson I learned while caregiving. We have to be specific because people don't know 1.) that we need help and 2.) what kind of help to provide. Like with the party you mentioned. To other people it might sound like a nice thing to do but they don't know what we go through. No one knows that if one more thing is put onto our plate we are going to end up needing care ourselves. They're not stupid, just unaware.

Many facilities offer respite care for families. You need a break.
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We are now on hospice care and I pretty much live to see those folks, but the other issue is something that unless I place her otherwise, I have to deal with. The nurse has done this as well, but the in between times it is on me. No, they don't have a clue and part of it is my fault for trying to be so cheerful but the cheerful has gone now and the relentless issue with the colonic situation is about to kill me. I don't know why it is getting to me so badly. I am not necessarily squeemish but I think it is the constant issue of having to do this. My Mother would not last long in a nursing home and I am still at that point where I can't live with it if I do it. I love her and I'm trying but this is the hardest, lonliest, saddest road I have ever walked in my life....
Thank you for taking the time to answer....
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I spoke with our nurse today re the respite care. I have been reluctant as Mother requires that someone stand beside her and remain until she finishes her meals. She cannot feed herself, is easily choked, etc. and she will tell you she is not hungry when she is, in fact, very hungry...

The person who comes to "help" me does know what I deal with. She has seen it first hand...She is just not able to do it...physically or mentally. She can't even get her own cup of coffee...waits for me to get it for her...I feel like cancer is eating me alive at this point and feel completely hopeless. At this point I know I am my own worst enemy. And knowing it is never gong to get better, only worse, is not helping...pray for me please
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God forgive me, but other than the hospice folks, everyone who comes in this house complains about how horrible their life is and how they need someone to perk them up....so they come to see me...Good Lord, if I perk them up then they truly are in desperate shape....
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Let that extended family know you could use some help. Don't turn them away again. They are ready and willing, just call them.
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Hope22, have you really been willing to look at the question of why you can't live with yourself if your mother goes to an NH? Did you promise her some time in the past? What you are doing sounds superhuman and your suffering is constant. You can still advocate for your mother and be there for her when she is in the NH.
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hope, what do the hospice nurses say about the constipation? Surely there must be a pill that will keep the poop running freely right? If they can put a man on the moon for heavens sake, they ought to be able to come up with a stinkin' pill for your mother. Get in the doctors face about this if the nurses can't/won't help. And let's face it, not everyone can handle someone who is bed bound etc. If you really want to feel free to get away for the day, I'm afraid you're going to have to pay for a caregiver that's experienced to come in and sit with your mom while you're gone.
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Hope; I stopped reading when I read that you wrote "my mom wouldn't last long with NH care". Dear one, that is an assumption on your part, I don't know where it comes from, it was also a mantra from my childhood, vis a vis my gram. My gram died a horrible death (my opinion) from gangrene; my mom took "great' care of her til my little brother brought home the flu, pneumonia, which landed her in hospital; because pneumonia in elders is often asymptomtic til too late (more about that in a bit), she developed gangrene which they could'n't treat (this is 1976) etc, etc. My mom, post stroke and post hip surgery is in a NH. They picked up pneumonia early this winter; mom never coughed, never ran a fever. the nursing asst's said "she's just not herself". blood tests were run, elevated white cell count; they transfered to hsp and hey presto, it turned out she had pneumonia! Three days on IV antibiotics, she was back in NH, doing PT, OT and the whole kit. Truth to tell, I have to work; back inthe day, my dad was the man of the house, my mom stayed home to tend the children and my gram. But MY mother is getting FAR, FAR better care in a NH than gram ever got at home. that's my opinion. I'll add one other piece for those of you who are Bible readers. Again and again the Torah (I'm Jewish) teaches us "you shall not uncover the nakedness of your father/mother" While this is generally interpretted as being a prohibition of sexual relations, I take it more literally. I think it is an abomination for children to involve themselves in the private parts of their parents. I'm sure that some will argue with me, but that's how I feel. Been there, done it, not doing it again. My mom needs her dignity.
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@ starrysky....no, to the contrary, my Mom, all of her life, has told me to never put my life on hold because of her. I know for a fact that she would have NEVER wanted me to do what I am doing. On the other hand, this is a Mom who has been the most precious, loving, selfless and giving human on the face of the earth her entire life. She has endured things off of people and done so with grace and kindness beyond what I would ever be able to do. She is superhuman in my eyes and one of the rare ones in the world who I just simply do not want to put her in a nursing home. Mom asks nothing of me...period. It is not a guilt trip, nothing happened in my childhood to make me feel like I owed it to her...other than the fact that my Mom, in my eyes, is a saint to me.

I am tired, I cannot deny. I have days when I go to my room and have to get it out of my system and then pull myself together and start again..but I am doing it.

But the reason I commented re the Nursing Home...I am not bashing them in general....I know there are a lot that are really good. BUT....it depends on the home, the area, the level of care, etc. blah blah blah...BUT, the times when Mom was there just for rehab, her health DID deteriorate...her mental health DID take a nosedive...I know it is not possible for everyone to be home with their parent or loved one...but I am here because I want to be and as long as God lets me breath I will be here...

I am just so frustrated with the whole issue of the physical issue she is having with, of all things, constipation...as per one of the other comments...we can put a man on the moon....lol...thanks for the laugh..but too true....today is better....and so I carry on. I do appreciate everyone's input...I think I would be lost without this site.....God bless to all....
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Hope, I'm a little tired myself so I'll be brief. The level of constipation that your mother is experiencing is worrisome. I think you should have her see a doctor asap. No, you shouldn't have to go to the lengths of care you're dealing with now. Please, give your mom activia every day, twice a day, and call the doc. Your mom is suffering if things are as bad as you say.

I get what you mean about the NH. There are really good ones, and elders are taken very good care of. But yeah, nobody there is going to care like YOU do.

As for the nakedness and the bible, Ba8alou... I'm not religious, but I believe in God and have my own ways of viewing things. God didn't create people fully clothed, did he? Why would he concern himself over much with something that was HIS idea to begin with?

There were things I had to do for my mom that I never thought I'd have to do. Never even considered it and would have laughed had someone told me what I was going to be facing down the road... I would have said then that I couldn't do it...but I did do it....

It's all about your comfort level and there's no 'right' or 'wrong' there. It just is what it is. There are things that people deal with here that make my skin crawl thinking about having to do it myself, and thanking God that I don't... Some things that people here have to handle and deal with, not just once, but many times, are so beyond me... My hat is off to them.

Nobody here walks an easy road. :/
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And Hope, I get your frustration. What vital, healthy person could stay healthy, especially mentlaly, when they're environment has shrunk from the whole world to four walls with no way out and no end in sight... It's daunting. You have to be really, really strong to hold up under that kind of pressure, not to mention anxiety.

Every person here that's a care taker for an elderly relative either in their home or the parent's home, knows exactly where you're at. You're in good company around here so keep writing. We get it.

Breaks, breaks, breaks. Gotta have them. Easier said than done, sometimes, right?
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God, I wish we had an edit button around here...Why the h*** don't we?...I like to correct typos... Grrrr...
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I just wanted to say that you are not a b***h. You are the furthest from it. You are an amazingly strong, compassionate and wonderful person to have made it this far. The potty issues and the bedbound issue mean that it is time for nursing home care. NO ONE can work 24 hours a day, and that's exactly what you are trying to do. Give yourself a break (with the guilt). And this "helper" you have? It sounds like SHE is looking for a caregiver...not to be one. Start making the calls now and get your mom placed, and then begin to rebuild yourself. If you are able to do all that you say you do each day, then you CAN regain your life.

Angel #2
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Is your mom on opium-based pain meds? They cause constipation.
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Hi Hope, big hug to you. You are not a "b" - I think you are amazing. Your loyalty to your mother kind of mirrors how I feel about my mother. It is clear from your posts that you are running yourself into the ground. I tend to feel "cooped up" when I'm in my house too much and i'm not even a true caregiver yet! you chose your screen name "hope" for a reason. Please find some help for your mom so you can take a break and hopefully get some of this pressure off your shoulders. You have hope, I can tell it's there - PLEASE let someone help you. That will allow you to be present for your mom as the beautiful daughter you are, not an exhausted caregiver. good luck to you my dear. please keep us updated.
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My mom is in a beautiful residential care home in a nice neighborhood, nothing like an NH. Cheerful and the caretakers are kind and keep the residents active as possible, the meals are home cooked. There are definitely quality options out there. I applaud you for how much care you have given your dear mom, but I'm sure she would never want you to feel this burdened by her care, as would I for my children. Your well-being is very important as you have many good years ahead of you. It's okay to get the help you need from professionals who can care for them in shifts of multiple people at a time. It's often much better for her and you both.
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So many wonderful and insightful comments here. Just a few comments on the positive side of nursing homes. My mother was a resident prior to her passing and it does take some time to adjust like anything else. But if the person is in one of the best nursing homes in the area that you can find, as my mother was; there are many benefits to it for both the patient and caregiver.

It is something to think about for the future. You are still their caregiver, just not 24/7. There are other professionals for that. Your time spent with her can be of more quality than quantity. I know my own mother would never be comfortable with me taking care of her personal bodily function needs; while my MIL who had lived with us became quite comfortable with it and I never thought she would. My mother was adaptable and enjoyed the social aspect offered by the nursing home versus the more isolation within a home. She made friends and enjoyed the staff. In our situation in worked out for the best.

I'm just putting this out there that the nursing homes of today are not the ones of yesteryear. Things have changed but you have to do your due diligence to find the right one. After taking care of 3 elderly I learned they were much more adaptable to change than I anticipated. The aging process with all its ailments, etc. is no picnic, but it can be something that is not totally draining on all if the thought of placement in a facility is at least explored. It can prove to be beneficial to all concerned.

My MIL lived with us until she passed away and I suffered health problems from being so burnt out and being a parent of teenagers at the same time as well. So, I have done both. And losing one's health from the stress of a caregiving situation is not good. Think about all options out there. You are important too; especially to your mother. Take care.
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Hope 22 - I wish I could give you a hug! Being a caregiver is an extremely hard job physically, but when it's a loved one it is daunting emotionally as well. I care for my mother and mother in law (90 & 100). I have a rigid schedule between showers/shampoos/laundry/meals/housecleaning/shopping/Dr. appts./medication administration/finances/manicures & pedicures and it goes on and on. I've been following your posts and I think you are way too hard on yourself. (Although I can identify with everything you say.) I think your frustration (as is mine) is that your mother was a good Mom, not just to you, but your siblings. It is very easy to feel resentment when your siblings call to chat about their vacations, hobbies etc. and you can't find time for yourself. Since your Mom is on the hospice benefit now, use all their resources ..... CNA's for bathing, volunteer companions so you can go out to lunch, and utilize their social workers & chaplain for emotional support. The nurses should be taking responsibility for her bowel movements. Having been a geriatric nurse and hospice nurse years ago, I thought this would be a snap, but when it's 24/7 365 and you see your loved one changing mentally & physically, it is often overwhelming. As difficult as it is, I have to remind myself that this was my decision and it is my gift to them, and I am sure we will never regret it after they are gone. Your mission is to take care of yourself.
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Thank you all for your comments...all of them have valuable information and thoughts for me to process.

I am very happy to report that after the myriad of softners, enemas, suppositories, etc. and having researched and researched various medications, and discovering that a few of them did aggravate the constipation issue, I focused on her diet and had noticed that there was literally no fiber in it. I discussed this with her hospice nurse and they were somewhat adverse to introducing it into her routine, but after all the other things had failed miserably, I decided to try it in small increments and see if there was any improvement. There was! And once that begins to change for the positive, there is an absolute noticeable difference in her comfort level of course, but her mental clarity as well. She and I have had a blissful day and shared some very sweet moments.

While I know that there are many nursing homes and many of which offer activites and such, my Mom is at a level where she simply cannot move, cannot hold herself up even, and with a lot of prayer I am going to remain diligent in keeping her at home. Our hospice has discussed the respite care and I will probably do that, in order to simply take a breather, but the days like today make all the rest of it so worth it. Yesterday was hard, off the charts hard in fact..as were the days and weeks leading up to it...but today was such a blessing and I think an answered prayer and oh those sweet moments....I have her bed in the den, where she is able to watch (or at least listen) to tv, is able to enjoy company when they do come, and able to look out the windows and easily hear the birds singing. It is working for us as long as I can keep the gastric issues at bay. Again thank you all for your thoughts and comments...and tonight I wanted to share the joy of this day....blessings and peace to each of you..
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