She won't listen to me

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Bella33
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Date Joined Aug 2008
Total Posts : 447
   Posted 3/8/2010 1:34 PM (GMT -6)   
I need help please. I struggle daily to get my mom to allow me to take her PJ's off in the morning to change her into street clothes. When I try to pull her tops up she pulls it down. When I try to take her pants off she pulls it up or grabs it for dear life. The elastic on her waistbands is on it's last leg. When I take her to the restroom she won't sit on the toilet. I try to push her to sit down and she stands firmly in front of it. When I try to take her pants down she pulls it back up just like when I try to change her.

She has about 1 bowel movement a week and I know she holds it in on purpose. Many times she would be sitting on the sofa for hours and the moment I take her to the restroom she would go like a light switch which I don;t think is a coincidence. IT's just that she felt it was time to go. She also holds her urine in for hours at a time. When she does finally go she ends up going in her diaper. Last weekend it leaked out while she was asleep because she slept on her side and it came out. I ended up doing the laundry at 4 in the morning to wash everything that was covered in pee. I then dragged her to take a shower because she was just covered in it from her lower back and downward.

I am getting so tired and frustrated with her lack of support that I'm starting to get panic attacks each time I take her to the restroom. She won't tell me if she needs to pee or poop so it's all a guessing game for me. Any suggestions? What can I do to make her cooperate with me? We spend hours in the bathroom nightly before bed hoping that she could pee before hand so I wouldn't feel the need to take her at 1 in the morning which I have been doing each night and then once more before she finally gets up at 6:00 am. She tends to have more urine in the middle of the night for some reason. I've been getting up at least 3 times a night for over 5 years now and I've lost the ability to sleep through the night. I only nap. I get paranoid that she will get up and wander around and mess with things so I constantly wake up even though she's sleeping soundly.

Bella33
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Date Joined Aug 2008
Total Posts : 447
   Posted 3/8/2010 1:37 PM (GMT -6)   
I forgot to mention that she does the same thing when I try to give her a shower. So.... she only gets one once a week. It's ok in the winter but when summer comes I don't know how that will work out. My whole body hurts from struggling with her and I still work a full time job. I don't know how much more I can do. I threaten to take her to the nursing home all the time but either she doesn't understand what I'm saying to her or she just doesn't care. She shows no fear.

college coaches wife
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Date Joined Mar 2010
Total Posts : 61
   Posted 3/8/2010 2:55 PM (GMT -6)   
Oh Bella33, my heart goes out to you. You are such a wonderful daughter to do all that for her. Have you called home health? Don't if you have to have insurance or what, but they helped with baths, etc when my grandmother was in bad health. Surely there is an Alzheimer's helpline you could call for more help. Hang in there - lots of Luvs

Bella33
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Date Joined Aug 2008
Total Posts : 447
   Posted 3/8/2010 3:00 PM (GMT -6)   
I have a helper who picks my mom up from the daycare center and stays with her until I get home from work which is about 3 hours a day. My mom will not let her shower her. I wish she would so my life would be so much more simpler. My older sister comes around maybe once every 3 months and both of us each get soaking wet when we shower her because she moves around a lot and the water just drips everywhere. I try to baby my mom and ask her if she feels good after she takes one and she always smiles and says yes but unfortunately she forgets and we struggle all over again the next time around.

I give her the full treatment. She gets lotion rubbed all over her when she's done and then she takes a nap afterwards so what's not to like right? I should be so lucky to have someone give me a shower like that.

college coaches wife
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Date Joined Mar 2010
Total Posts : 61
   Posted 3/8/2010 3:16 PM (GMT -6)   
You seem to have a huge heart. I hate that your sis is only around every 3 months. At least you have a sibling. My brother died in a diving accident at 17 yrs old - long time ago - I'm 48. Both of my parents are still going strong, but (74 and 83) I am saddened when I think about having to one day take care of them. My grandmother lived to see 100. Is Alzheimer's always genetic - no one in my family has ever had that. My family fears cancer - runs on both sides. Terri

Bella33
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Date Joined Aug 2008
Total Posts : 447
   Posted 3/8/2010 3:24 PM (GMT -6)   
I actually have 2 older brothers too. I'm the youngest believe it or not and I'm the one that's doing the care taking. One brother has a heart condition and I'm paying his expenses while the other is totally into his own family so I hope he ends up in hell for his lack of support with us.
My sister who is the oldest and does not work because she doesn't need to told me years ago that if I ask her to take my mom off my hands she will send her to a home instead so I'm stuck. I refuse to do this and live with my decision at the end. I KNOW my mom will die very soon if she's sent to one. She's very dependent on me and probably vice versa. I'm alone and do not have a significant other.

So in a way I feel alone. It is always a burden either way to have aging parents. I wish we can all die in our sleep just prior to getting a disease that can't be cured which by the way is every kind out there. Don't get me started on the pharmaceutical companies. You know we will never have a cure for anything because they will go out of business if we the consumers don't keep buying their meds to keep going.

college coaches wife
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Date Joined Mar 2010
Total Posts : 61
   Posted 3/8/2010 3:52 PM (GMT -6)   
I have fibromygia so I can definitely hop on the pharmaceutical bandwagon!! I know I pay for their houses, cars, etc. I don't know how you are caring for your mom and other family members. As for your selfish siblings, I firmly believe the "what goes around, comes around". I also believe you will have many jewels in your crown in Heaven and God will reward you for a "job well done". Just keep your faith and pray often. He does hear our cries. I have many stories that I have experienced when I was at my ropes end and prayed my heart out. At one point I thought He had deserted me (my ultimate low point). A small miracle happened (I know, I was there) and I knew He had never left me. It was His way of letting me know He hadn't forgotten me. Pray for peace and strength, Bella33, He also is a good listener when you need to talk. I've heard so many stories like yours where only one sibling is the caretaker - you are the strong one, the family leader. I hope I am as strong as you when it comes time for me to change roles with my parents. You are truly a gem!!! God bless you. Terri

Bella33
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Date Joined Aug 2008
Total Posts : 447
   Posted 3/8/2010 4:00 PM (GMT -6)   
I have a co-worker whose wife also has fibromygia and he's her caretaker and it's taking a toll on him. But men... they can't take this kind of pressure like us women. I told him at least his wife can think and communicate her needs to him which is more than I can say for my mom.

My sister is a big time Christian who rather do missionary work then care for her own mother. I'm sure GOD listens and perform miracles but I'm probably on a very long waiting list. I don't know how much longer I can wait.

Thanks for your pep talk though. It's very comforting and helpful. Take care.

college coaches wife
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Date Joined Mar 2010
Total Posts : 61
   Posted 3/8/2010 4:22 PM (GMT -6)   
I have an Aunt like your sister - she is a minister. She too would rather help everyone else but her family. Please don't profile Christians by your sister and my Aunt. We all sin, but I'd rather pay for my own sins than theirs (leaders in the church that turn people away by others watching their own actions). Just remember they are human also and will too stumble and fall and have to answer to God for their own actions. I haven't been to church in a while mainly due to my illness so I'm not a Bible-screaming Christian. I DO BELIEVE in a personal relationship, however. Don't let your sister keep you from praying. She too will have to answer severely for her selfishness. Just remember, you are a wonderful person!! Maybe you should remind your sister about her faux-Christian attitude. All the best.

Bella33
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Date Joined Aug 2008
Total Posts : 447
   Posted 3/8/2010 4:35 PM (GMT -6)   
Yes I know. My sister has been trying to get me baptized for years but I believe in my own God and not be forced to follow their ways. She doesn't see what she's doing as selfish because she sees the big picture that she's helping so many children in impoverished countries to become Christians and spread the word of God. She creates a Christmas letter aka Brag letter every Christmas of all the places she's been to for missionary work or just plain pleasure. (Pleasure will be 70% of that ) I'm sure the letters are just more exciting if she does that instead of "I'm still caring for my mom daily...." You can't change people. I've learned that the hard way. Everyone is selfish. I think it's human instincts to protect yourself first. I may seem to be so giving and all that but my mom is all I have so I'm just protecting my interest as well.

My aunt reminded me that my mom took care of me as a child so this is payback. My aunt wasn't around when I was growing up so she doesn't know how I was brought up. Believe me, I've paid her back years ago already. My mom has lived a good life and is well taken care of by me. What will become of me when I get older? No one ever thinks of that right?

college coaches wife
Regular Member


Date Joined Mar 2010
Total Posts : 61
   Posted 3/8/2010 5:02 PM (GMT -6)   
I feel the same way - by the way, you can baptize someone until they nearly drown. Baptizing itself doesn't make you a "Christian". Don't believe your sister has gotten that part. Anyhoo, enough of that. You hang in there girl. Wish I could help you - I live in south Louisiana. I'm sure a long way from you. Its funny how, no matter where one lives, we all are fighting with illnesses that no one seems to understand or have a cure!!! Guess we all need to encourage each other! Hope your days get easier for you. I'm going to talk to my mom about who she contacted for help with my grandmother and will let you know what she said. Maybe we can get you some help SOMEHOW. All the best, Bella33. Many hugs for you.

SnowyLynne
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Date Joined Apr 2004
Total Posts : 1539
   Posted 3/8/2010 9:46 PM (GMT -6)   
Bella,try to get into a routine even when she fights you,just try again in ahile.........
SnowyLynne


disey
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Date Joined Mar 2010
Total Posts : 10
   Posted 3/8/2010 11:12 PM (GMT -6)   
Hi Bella,
I can only imagine what you are going through with your mom. You are a real loving daughter to take care of her in her state of mind. To let you know my mom was diagnosed in 2001 with Alzheimer Disease or similar and after 3 years of my dad and a local community centre couldn't handle her anymore, they had to admit her to a long term facility. She was on the Alzheimer's floor for most of the time until a fall she had from running through the hallways. She thought she was a child again and could run. She didn't know what she was doing though. She was placed in a wheelchair and moved up to the main floor. I struggled seeing her deteriorate before my eyes and couldn't bare to visit her as often as I should have. But unfortunately she passed away in December 2009 from an infection that took over all of her organs and shut it down. If she had not got the infection, she would've still been alive with Alzheimers! She was so friendly, loving, never violent even with her disease. I totally know how hard it is. My mom was like yours at the beginning, she fought, argued, woke in the middle of the night numerous times, almost left the house in the middle of the night. She was fighting what was happening to her, and all we could do was do our best to help her. I hope things work out for you and whatever you decide, i've been there also. All the best and take care!! It's hard to see someone we love so dear suffer like they are with such a horrible disease. I know, i'm still dealing with the mourning process. It's really hard, and being it's a MOM.....it's only that much harder. Need to talk, let me know :)

Bella33
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Date Joined Aug 2008
Total Posts : 447
   Posted 3/9/2010 12:32 AM (GMT -6)   
Well... I took her to the toilet an hour ago. She rubbed her stomach to indicate that it was full and she was ready to go. She was about to sit and pulled down her own underwear when all of a sudden she jerked it back up. I then got anxious and pulled them down for her which is when she struggled with me yet again. I kept telling her to sit down first and she kept saying "ok ok" but is standing up. I then got really mad and yelled at her which was a big mistake because I know it means she will hold in her urine which is what she did. She sat there for 30 more minutes and then I put a diaper on her and walked away for a minute. When I got back she was pulling her diaper apart which got me even more frustrated. I then pulled her up from the toilet and put her to bed.

When she doesn't pee before she goes to bed means to me that I will have to take her again in a few hours which means another sleepless night for me. She seemed so normal today after I got back from work. The caretaker said she peed at 4 and was fine. I then took her to pee before dinner at 6:30 but after that it went downhill.

Everyone keeps asking me what's next for me. I don't know honestly. If I send her to a home I will not visit ever because it will kill me to see her there and not have her be with me. I expect to be in a great depression as the disease progresses. There is not a solution to this. No therapy in the world can heal my pain. I do pray everyday for a miracle but.... yeah there's always tomorrow.

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 447
   Posted 3/9/2010 12:36 AM (GMT -6)   
I am very sorry for you losing your mother in Dec. I was crying while reading your posting. I am just terrified. How does anyone live a normal life? When I watch TV and see people stressing over their jobs or relationships I often wonder don't they have ill family members to watch over? I just assume everyone has my life story. Very naive I know.

disey
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 3/9/2010 1:43 AM (GMT -6)   
Totally! I never did what you are doing, taking care of her at home. My dad did for 3 years and it was torture on him, with her fighting, struggling and constant battles. She was not like that in normal state nor was she like that in Alzheimers stage while at the home. My dad took early retirement to be with her to travel, but that didn't happen, she needed care 24/7.
I'm sorry to have made u cry. I cry when I type about my mom even to this day, and when i talk to other's about her. Really, I kept it all in to myself, thinking no one can help me deal with this and what she is going through. They don't understand unless they have someone go through it.
I'm sorry your mom is doing these things when you are trying to help her. It is extremely tough. And it will get harder, since they will be dependant on you full time for everything. While my mom was in the home, I fed her lunch sometimes or her snack and it broke my heart to feed her like she used to feed me as a child. Wiping her mouth and so on. That's why I couldn't go often to visit her. It tore me apart so badly to be in that position, when really she should be still caring for me. It's not an easy ordeal to go through, I'll tell ya that right now. It's the toughest thing to do, and the worst disease anyone should have to go through. Would never wish it on anybody. The pain and sorrow you feel and you really can't change or reverse it at all which is even harder on you emotionally and physically. I always wished I could cure my mom and bring her home again, I knew that wasn't possible and now i'm suffering terribly, missing her so much more everyday. Time is supposed to heal, but for me, I don't think it ever will. I am the only girl and the baby of the family so it's taking its toll on me for sure. Plus my mom had a difficult pregnancy with me, dying on the delivery table, then being revived to be told it was a girl (me). She was revived and saw me grow and marry, but I never gave her all that I could while she was at home, healthy. Anyway, things will be different for you, thats for sure. Your life will be anything but normal, especially with your kindness of taking care of your mom. I couldn't bear to do what you are doing, i would be more of a wreck than I already am. Keep strong!!

Red_34
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   Posted 3/9/2010 7:21 AM (GMT -6)   
It may be time to just let her "go" in a diaper. Yes it may be messier but it might help you in the long run, mentally. It sounds like she is using the restroom stubborness as a way to hang onto control. She may be feeling that all the control in her life is gone but this is the ONE thing she can still do something about.

As for her going more in the middle of the night, have you tried withholding liquids a few hours prior to bedtime? If you are paranoid about her wandering, try putting large and loud bells on her bedroom door so you can hear it if she opens her door to wander.
 @--->--SHERRY--<---@
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~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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Bella33
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Date Joined Aug 2008
Total Posts : 447
   Posted 3/9/2010 12:15 PM (GMT -6)   
My mom is fully capable of eating by herself but she doesn't finish up which means I end up feeding her half way through. She is easily distracted and plays with her napkin or puts half eaten food on the table instead of her own plate. That's the perfect word to describe my mom, distracted. She's peed on the carpet in her bedroom many times because she gets up from bed with the intention to go to the bathroom but always find something else to do on her way there. The mind may wander but her bladder is still focused so... she pees where ever she happens to be standing at the time because she can't hold it any longer. I've been sleeping with her the last few weeks. It's just easier for me to keep tabs on her instead of coming and going out of my bedroom to check on her. I wake up constantly through out the night because I'm used to this sleeping pattern now. Yes I know it's a control thing with her when she pees or not pee. It's ok to wear the diaper now when its still cold but I'm concerned about heat rashes in the summertime.

It takes her a long time to pee from the time she drinks anything. Case in point, she can drink some water along with her dinner but there is no pee before bed at 8:30. Last night I got her up at 3 and she peed a lot.

The daycare center discourages her from wearing a diaper because they want her to pee in the toilet and be independent of a diaper. Also she is less likely to let them help her pull her pants down when she's wearing one for some reason. So, I only have her wear one before bed. The times she had peed on the carpet was earlier in the year before I started her wearing it.

Alzheimer is the only disease I know of that affects the caretakers more so then the patient. So, my mother is very lucky in that aspect. I will keep her with me as long as I still have a heartbeat. I may even quit my job in the end to stay with her full time if need to and find a way to survive. I was an accident baby. My mom already had 3 children 2 years apart from each other and then she got pregnant with me 4 years later after my brother was born which was a big problem because all the baby stuff was already thrown out. My grandfather told my mom not to abort me and someday she will thank him for that. Yeah, thanks grandpa.

One last concern I have is her lack of cooperation when it comes to taking her medication. She constantly keeps them in her mouth or she chews them up like candy. Again it's control thing. I tell her to swallow and.... she doesn't.

Red_34
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   Posted 3/9/2010 12:46 PM (GMT -6)   
One thing to keep an eye on is if she keeps retaining her urine, it can lead to a urinary tract infection. She may not be able to tell you about it so every once in a while, have her urine tested if you don't already do so.

And you are so right about it being hard on the caretakers. I know it must be hard on them too to lose themselves but the ones around them are being torn to shreds because they are forced to watch someone they love become a shell of who they were.
 @--->--SHERRY--<---@
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~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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Bella33
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Date Joined Aug 2008
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   Posted 3/9/2010 12:54 PM (GMT -6)   
My sister was more concerned of her kidneys. She used to get UTI all the time and it's a catch 22. When she takes anti-biotics she gets really really confused. I try to make sure she's clean down there. Although she only showers 2 times a week I make sure her underwear is changed daily and I wipe for her when she's done in the restroom.

I wish Obama would speed things along on a cure for this disease. Too much time wasted on health care reform. I think the only way to make this personal for him is to have someone in his immediate family to get it. The founder of Google has PD so... he's spending a ton of $ for research for the cure. More rich people need to get this because money talks.

Red_34
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   Posted 3/9/2010 1:17 PM (GMT -6)   
Does she like cranberry juice? If she does, this can help prevent UTI's or even treat them (as long as it is not severe and gone to the kidneys).
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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Bella33
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   Posted 3/9/2010 1:20 PM (GMT -6)   
Yes she drinks it daily. She's pre-diabetic from her last blood test result so I have to watch her fruit juice intake. Funny thing is that her family doctor said cranberries does nothing for UTI. MD's only know drugs.

Red_34
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Date Joined Apr 2004
Total Posts : 21989
   Posted 3/9/2010 7:38 PM (GMT -6)   
Hmm cranberry juice always seems to work for me when I get UTI's unless I let them go for too long. There are studies that prove that cranberry juice kills whatever causes a UTI if taken early enough. My daughter too has stopped a couple of UTI's by drinking it. Yes docs DO like to prescribe those meds don't they? I am not complaining because many of those prescriptions keep me healthy but I just wish they were a little open minded about alternative options.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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Bella33
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   Posted 3/10/2010 12:10 PM (GMT -6)   
Most of my cousins are MD's so they've told me firsthand that they know very little about alternative medicines. After all only pharmaceutical reps go to visit and push their drugs right? Also in Med school they don't concentrate on that either. They're just ignorant on that subject.

I tried giving my mom Turmeric capsules supplement to help her brain out. It actually worked wonders for about a week but then she stopped peeing. I later realized that it has anti-inflammatory properties so that will cause urinary retention. So I had to stop.

Howlyncat
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   Posted 3/10/2010 8:15 PM (GMT -6)   
i agree with Red i made sure mom always had cranberry juice and i also had to put bells up in case she wandered...i hv lost both parents and recently i totally lost my own memory do to seizure and other complications...yes it is frustrating for caregivers but i have felt the other end of the spectrum n i was scared felt so alone n really didnt want to be a burden on my daughter..i am now deaf as well...i was a geriatric nurse for many many years so you can see why this was difficult for me..they cannot help much of what goes on but i am sure you are tryng your best it is not easy but we are here for support n input ..lyn
ALSO It ripped my daughters heart out to see me as i was i have become much stronger remember more but still have bad days....lyn..perhaps when she is on toilet run the tap n see if that may jog her to piddle..idk just trying to suggesst different ideas....
                                        Long  Time Member of da Family
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Post Edited (Howlyncat) : 3/10/2010 7:04:19 PM (GMT-7)

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