Follow
Share

wheelchair bound And she isn't very nice about it either. What do I do!? I feel as if there should be some background as I think certain elements add layers of dimension to a seemingly simple situation and I REALLY need some good advice - I am an only child. I got pregnant young, the dad exited stage right and I was raising my daughter alone, living w/ my Mom still. Got my diploma w/ Moms help and continued on devoting my life to my child. Trying to figure out my next step in life, as always, with my Moms help.


Just before my 18th birthday my Mother died in a tragic and very traumatic accident. My daughter was 8mo's old. I didn't know my father so the people I turned to were my maternal grandparents for a place to live, life skills, emotional and spiritual help, etc... Grandma turned me away. Literally, turned me away. She stated that they "didn't have enough room" in their 3bdrm 2bath home for my baby and I. I lived in my car and couch surfed for about six months until my GRANDFATHER stepped up and helped me buy a mobile home which allowed me the stability, the 'leg up' if you will, to get my crap together and figure out my life. I remained deeply envolved in their lives and although there was no emotional support we did every holiday together and they were always there for my children. I understood that the pain of losing a child is the most unbearable thing and that her pain must have been much greater than mine. I shoved my feelings down deep and sought harmonious relationships with my Grandparents.


Later in life, the day he died actually, my Grandpa pulled me to the side and told me how sorry he was for "being so mean" to me and his only regret in his life is that he wasn't there for me when my mom died. He healed a LIFETIME of pain in that moment. My Grandmother on the other hand, has not and will NOT, even acknowledge there has ever been a problem. There is never an issue or a problem in her mind. There never has been, small or large. I wonder if she has lived her whole life in delusion. Delusional to the point that she lives in a whole other world in her head. Truly, she is sharp, remembers the past, yet refuses to admit that her body is hardly here anymore, that she is in Hospice, that she has already outlived the 6month time frame given. She thinks she can use the toilet on her own when her muscles in her legs are gone. She thinks she can cut her own food and feed herself. Not so. I do that for her and have been for some LONG time now.I do everything she demands, down to dialing the phone for her. Her voice is strong. Her lack of compassion for others, even stronger. Her muscles have atrophied from not using them. No PT or any Doc has been able to help. No hospice nurse or chaplain, no one can get through to her. She will tell me she brushed her teeth "this morning' when in all reality, she hasn't been able to use her hands in 6 months. She REFUSES to let me do it, so after me fighting and stressing and having multiple anxiety attacks daily, I gave up. She hasn't brushed her teeth in a month now...The Hospice CNA tries to brush them twice a week when she comes to bathe her. Sometimes it works... others, not so much. She BELIEVES she practices amazing self-care when in reality she has and does fight me tooth and nail, Every. Single. Step. Of. The. Way.!


And now, the toilet... I am physically unable to lift her from a sitting position from wheelchair to toilet and she is unable to do transition herself, even with gate-belt. We have a lift to get her in and out of bed but it wont fit in her bathroom. She will hold her urine instead of using bedpan or depends. I have tried everything I can think of to help. By the way, my Grandmothers diagnosis, the reason she is dying in my home on Hospice? Failure to Thrive. Not cancer or diabetes or any fatal illness. No. Failure to Thrive. After I have set up and facilitated a wonderful surrounding and atmosphere, where she is surrounded by people who love her. In fact, I have Grandchildren so she gets to see 5 generations. She is so loved and so very BLESSED! Failure to Thrive seemed like a big, fat failure for ME. Im working through that currently. At any rate, I have been dealing with my issues surrounding my Mom's death and that whole scenerio, pretty much my while life. Now, it is almost 30 years later, I am a grown woman with a wonderful husband, amazing children and grandchildren and caring for my Grandmother, who has lived in my home for almost 4 years now. I have been exclusively caring for her and attending to her every want/need for close to 7yrs, since my Grandfather passed away. She is the living breathing epitome of passive-aggressive behavior that is morphing into pure bitterness, resentment and spitefulness. She is a miserable person and no matter what I, or anyone else does, she will remail this way. She chooses to be this way, ignoring her love, joy and blessings. She cares more about what she considers, her dignity, which seems to lie in where she goes to the bathroom. What do I do?

This question has been closed for answers. Ask a New Question.
Well, at least use the Vicks under your nose....or not.
Helpful Answer (1)
Report

If she's 93, there is light at the end of the tunnel in that she might not cling to this mortal coil for much longer. You seem to be happy living with this ghastly situation, I don't really know what advice you think posters here can offer. Let her cr*p on disposable pads, I guess, and the catheter sounds do-able unless she tries to rip it out. Good luck, if this is the way you want to live, hold your nose and hope for that eventual crown in heaven.
Helpful Answer (0)
Report

It seems like the proverbial "why did you bite off more than you can chew?"
Helpful Answer (0)
Report

BedPanProbs--While I completely respect how you feel about taking care of Grandma, and honor that you must do what you must do so that you can lay your head on the pillow at night and sleep without reservation, where is it written that you have to accept Grandmas obstinacy. I can speak from experience with my 96 year old Aunt, I've had to make it clear to her that I will not feed into her delusions about her physical abilities and decision making skills. I tell her how much I love her but that she can't see well enough to make her own coffee, or use a toaster, or peel potatoes, or mop a floor. That she can't walk on her own without a walker so how can she safely mop a floor? Or that she can't safely bend over to pick something up off floor anymore no matter how badly she wants to. It's hard for her to hear and harder still for her to accept. But I have found it the only way to get thru to her to help keep her from hurting herself or falling. I remind her she is always telling me how much she wants to be able to take care of herself but when it comes to the things she actually CAN do, like not bending over, drinking her water, etc, and she refuses to do so, that tells me she wants to do what she wants to do, period. And don't we all. But at 62 I am having to accept that there are many things I can no longer do for myself and must hire it done. I don't like it but I have no choice but to accept it. And neither does she. This sounds harsh and it is hard for her to hear but it is the only way I know to try to keep her from hurting herself. Don't know if you can find a loving way to set this kind of boundary with your Grandma but until you do, your situation will only get worse with you caught right in the middle. I pray every day that God will allow my Aunt to pass before it becomes necessary for me to place her in a nursing home. She is so afraid of that it will break my heart if it becomes necessary. But we have no other family members and no money to hire help. If she begins to require someone with her 24/7, I won't have a choice. I need to work a part time job now but I am holding off as long as I possibly can financially. I am praying, as I said, that she will pass at home, which is what she wants, or that her mind will not know where she is when I do have to place her. It's sad and it's not fair but such is life. Good luck to you and remember, setting boundaries in a loving way is not mean or disrespectful. It's what we do to take care of ourselves in this process.
Helpful Answer (1)
Report

Bedpanprobs, I think the most shocking thing that I read is that you describe your grandmother as SHARP in mind, despite all of her antics. And sharp, when she's having delusions about her capabilities. I can't wrap my brain around that one, but, it seems that you are trying to sort out some issues by making things right for her. That is very kind of you, but it doesn't seem to be helping her or your family very much. It's tough to care for people who are resistant to care.

I would question what she is thinking or if she is thinking much of anything, though you say she's sharp. Something is really off and when that's the case, the disturbed person can't keep driving the train. Since, it seems that you have difficulty doing that with her, I'd explore Hospice Centers in order to place her. Then your time with her could be less stressed and focused more on other things.
Helpful Answer (2)
Report

If you are hoping to get some resolution from this person, I can tell you that it will never happen. The happy endings and what your grandfather did, does not always happen. The problem is not you. Your grandmother has borderline personality disorder so she only 'sees' what she wants. Let go of the hope that she will finally change or appreciate anything. You need to save YOU and your child. The way she is, is a result of her choices, not yours. She believes she is perfect so she prpjects her mistakes on others.
If you are going to care for her you must understand that what she says is not based in truth but her delusions. She will twist turn and pervert everything to get what she wants, make you look bad, and/or whatever she can to maintain control. Even as her body gives out the twisted energy will keep her going. This is a no win situtation and she is insane.
Helpful Answer (1)
Report

So the poop is almost metaphor for the way she has treated you lifelong and for her unfortunate outlook on life. Except, metaphors don't smell so bad and require cleanup. I would say if you keep her at home, you let hired care aides do as much of the care as possible. Glad you got hospice in any event! And realize that her "failure to thrive" is not your failure. Her body and her mind are failing, and it lets even more of her stubbornness and selfishness show through. She will not be capable of the kind of insight that would let her change much at all, unfortunately. Accept this and don't take her personally as far as you are able... though I know form experience that constant negativity and criticism is like a poison to the spirit and it is not always possible to just suck it up all the time either. Is there any benefit to the kids and grand kids from her living there? Are at least a few good memories being made? Do any of you ever get to take her outdoors for a wheelchair stroll around the block, or go out for pizza or anything? If not/not feasible, maybe you do need an alternative to home care...visits can be short and sweet, and behavior is often better for non-family with regards to her getting the care she won't even let you provide -it could be better for everyone if it is an option.
Helpful Answer (2)
Report

To the OP,
I wonder if your grandmother has ever tried the newer pull up incontinence briefs? They are nothing like the huge, bulky diapers she may be envisioning, in fact the lighter ones are only a little bigger that the average full size "granny pantie" briefs. You might try some out with the idea that they are for "just in case" you can't get her to the toilet on time, not as a replacement to toileting altogether. Even one less mess is a victory!
Helpful Answer (2)
Report

annetx, I agree with you, being exposed to human waste is not a very nice position to be in, but with a bedbound patient, sometimes there is no other way.
Interesting, I'm in the same position as you, with my FIL, moving soon from our home, and into a Senior Living situation, probably Assisted living. I will be very interested in how that goes for you! I will PM you with questions, and maybe we can learn as we go, from one another, Good Luck! Taking back our lives! Yea!
Helpful Answer (1)
Report

Can you have the medical person forcefully mandate, perhaps even in written form, the depends in her presence so she gets it from an "authority" figure? Her mind may be relatively intact but exposing the family to daily doses of urine and fecal matter isn't rational behavior.

Hopefully you get a decent amount of respite time. I just started the process of securing a spot for my 90 yr old can't be left alone mom in assisted living after moving her into my home 7 years ago. I haven't felt this good in a long time. She is bored so the move will serve everyone. She could live another 10 years and I can't spend the next decade this way. Her savings will go and then medicaid but its well worth it. This is my life too.
Helpful Answer (4)
Report

BPP, so you are determined to keep her in your home, so the only real thing that you can do is create an effective way to relieve you poop and pee issues. I would invest in some of those large 4 X 4 ft thick waterproof and cotton pads that they use in nursing homes, to be placed on top of the water proof matress pad, plus chucks, which are the plastic absorbable pads to go on top of the other pads in the bed. Also ask Hospice about getting her a catheter. It will be needed to be changed by the Hospice Nurse every 10-14 days, as it sounds like she is bedbound, and when she does need to go number 2, she will need to roll on her side and let it rip onto the Chucks pad in the bed, and you will have to change those disposable's out frequently, and give her a good washing up afterwards, but I don't see any other way around it. My Mom was bedbound and on Hospice, and we were unable to move her due to a crumbling pelvis, being eroded by the Cancer spread to her bones. She was in an immense amount of pain, and could barely roll over, and our only other issue was that her pain meds caused dreadful constipation, and occasionally she needed to be manually disimpacted, Not a fun job, but nessasary, and because we Loved her, we did it in the most dignified manner as possible, using sheets to cover her nether region, and gloves obviously. The Nurses taught us how to do this, and we did try our best to keep her from being constipated with foods and meds, but that does not always work. I applaud you, for sticking by her, and hope that her eventually passing is swift and painfree as possible. The Hospice Nurses should be able to help you through these toileting issues, it's not easy! Take care!
Helpful Answer (3)
Report

Carla, very well written. This may not solve BPP's issue, but I took something away from what you said. Thanks
Helpful Answer (6)
Report

BedPanProbs - I actually do understand your motivation here. But, I would not do the same thing in your place. I'll suggest an idea from M. Scott Peck here (from the Road Less Travelled). He said that the hardest thing for a loving person to do is to learn how to not waste their love on people who are incapable of benefitting from it by growing spiritually. That is the measure I use now. We can only "heal" that portion of humanity that is open to being healed by our love. It sounds to me like your grandma is not in that category, at all. You said it yourself "She chooses to be this way, ignoring her love, joy and blessings." I believe you are casting pearls before swine. Your love would be better spent on your children, grandchildren, and others in your life who would be capable of benefitting from it.
Helpful Answer (12)
Report

You won't put her in a home ? What is your reasoning there.?
Helpful Answer (4)
Report

Failure to thrive is just one of those diagnosis that mean they can't (or won't bother) to pinpoint a cause.
I accept that you are working on accumulating good karma, but you can only do what you are physically able, I tell my mom I'm not a 6' tall muscle bound man, it's just me and I can't carry her. Would she accept using a commode?
Helpful Answer (3)
Report

Clarification- I didn't mean to 'demonize' her, only give an insight into my issues behind the current issues. I won't put her in a home. I will extend grace even where it wasn't offered to me because I feel like that is how we heal humanity. One person at a time. I deal with my wounds by doing good. I work on doing what I feel resonates as 'right' for me. Offering grace and mercy is what I want to teach my kids to do. That said, this is hard and the bathroom thing drives me nuts. Pisses me off even. I'm not sure how to ease her and myself through this adjustment.
Helpful Answer (2)
Report

Wow... you have done your duty to pay Grandpa back and then some. First, stop taking "failure to thrive" personally. You have NOT failed. She sounds like a stubborn narcissist who for whatever reason wants to go out her own way.
Have you talked to the director of the hospice organization for ideas or for another way to deal with her refusal to cooperate? Is there a residential hospice in the area? You need help and I understand when you have to blow the whistle when you cannot physically lift them anymore.

Keep us posted and my best to you.
Helpful Answer (5)
Report

Call your local Area Agency on Agency and get a "needs assessment ". This will let you know how much care she needs and where this is best accomplished.

Then you locate the appropriate facilities and take her on tours. If she's not ammenable, you start eviction procedings.
Helpful Answer (2)
Report

I'm sorry, I didn't read every word of your post as I have a short attention span, but why in the world did you ever think it was a good idea to invite this mean old harpy into your home to provide hands on care? She's being a demanding, belittling b#$&@ to you now... sounds like that's nothing new! Time for you to put yourself and your marriage ahead of your misguided feelings of obligation and put grandma in a new home.
Helpful Answer (7)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter