The Mad House

@AmbiePam (48108)
United States
June 12, 2011 5:54pm CST
I completely realize long posts get fewer responses. God bless the ones who care enough to actually read this whole thing. Anyway, last week, the vacation my family and I took was really great. I did not stay in the same location as the rest of my family (mom, dad, sister, brother-in-law). I was like a mile away. So not being in the same place was great because I didn't have to get stressed out by my mom. Besides, if my dad needed help, the least my sister could do was pitch in. She lives three hours away, and has no clue how hard this whole thing is on my dad and I (obviously way more on my dad). There were times during the vacation that were trying by my mom's actions, but it went well. But on the day we went home, oh my word.(Sister and BIL drove themselves home.) By the time the 7 hour drive was over, my nerves were shot. I was so on edge. Although people have pointed out that family restrooms and unisex restrooms exist, of the five times we stopped (doc says her need to use the bathroom all the time is related to dementia), only one place had a bathroom that I didn't have to go in with her. That one place had a unisex bathroom, so my dad took her. You're probably saying, so what? You took your mother to the restroom. No, no. I went into the stall with her. The first time we stopped she didn't want to go in the bathroom stall because no one was in there. Yes, she didn't want to go in the stall because it was empty. When I convinced her that was how it was supposed to be, she sat down for five seconds, then stoood up and said she was done. I had to tell her that she hadn't done anything. She argued with me for 5 minutes before I convinced her to sit back down and go to the bathroom. And she eventually went. I had to make sure she goes because when her stomach is upset, you don't want to be halfway between stops and her poop in her pants (she's done that before). Another time I took her into a bathroom stall she didn't want to go in because there was no place to sit. I told her the toilet was where she was supposed to sit. So she sat. When she finally went, she said she couldn't (pardon the grossness) "clean" herself. So I did it. And she started yelling at me that I was doing it wrong. Then yesterday I came over to watch her for an hour and a half while my dad ran an errand. Her stomach was upset once again, so he needed her to stay at home. The whole time she never sat still. She opened the front door and told me my dad was sitting outside in my car. I took her outside to show her no one was in my car. We came back inside. She did it again. I took her out again. She kept asking me questions, and when I answered she'd ask me why I was telling her anything. She didn't remember asking me anything at all. There is no giving her something to occupy her time. She'll lose focus in 5 seconds. She paces. She snaps at you. My mom was the sweetest woman. Her former self would be appalled at how she is now. Although she is only 51 her dementia has settled in deep. I came over this afternoon to help my dad and she started yelling at me and him. When she finally went out of the room I started crying. I can't stand how she is making my dad's life miserable. He's been so good to her. Doesn't raise his voice, repeats everything he says without losing his patience. It took him time, but he has learned to not let his frustration show when he talks to her. When he told me to go on home to my apartment I cried all the way home. At this point, she's the best off (emotionally) of all three of us. Yes, she has lost her mind, but she thinks there is nothing wrong with her behavior. Every need she has is taken care of. Meanwhile the sadness I see in my dad's eyes never gets better. I can't stand it anymore. I'm starting to feel like my soul is hurting when I'm around them both.
8 people like this
19 responses
• Philippines
13 Jun 11
Whenever a family deals with a sickness. We always focus on the needs of the sick. But we tend to forget that the caregiver needs to be taken care of too. It is just but natural for you to feel this way. It hurts to see that mom, an image of strength and source of security and love when we were younger is in that state. You feel compelled to stay beside her, yet it is hard since it pains you to see the person you love this way. I feel your pain. I just went through this myself. My mom battled Ovarian Cancer for three months. It was ironic since she was a gynecologist herself. It was difficult for me since I am a physician too. But at these times, I wish I was just a daughter who knew nothing about her condition so I can convince her that she'll get better. Be strong, for yourself, and for your dad and mom. It is now that they need you most. I remember my mom asking me if I was tired of taking care of her. I just said to her, I can't be tired for the person who has worked for so many years to give my brother and I a good life.
@daeckardt (6245)
• United States
13 Jun 11
I really feel for you losing your mom to ovarian cancer. I am currently in treatment for a recurrence of the disease myself. I not sure, but I have always heard doctors make the worst patients and many people dismiss the symptoms of this disease until it's too late. I was 43 when I found out I had it and I think the fact that I kept after my doctor to explain the way I felt kept me from advancing past stage 1 the first time around. I just don't understand why after going through surgery and chemo that 8 years later I had a recurrence. Oh well... Have a great week!!!
2 people like this
@AmbiePam (48108)
• United States
13 Jun 11
Are either of you familiar with the gold medal winning gymnast, Shannon Miller? She's the most decorated female gymnast in American history. She's from Oklahoma, and I was reading today in our paper how she has ovarian cancer. She's in her early thirties. She has a rare, agressive form. She said she was lucky because she was going to put off her yearly exam, but made time to go anyway. And that saved her life.
1 person likes this
@daeckardt (6245)
• United States
13 Jun 11
I think I read about her a while back. I was looking for information on how exercise helps you get through treatment and that working out helps her a lot.
2 people like this
@katsmeow1213 (29029)
• United States
13 Jun 11
As the queen of long posts myself.. I'm certainly willing to read others' long posts because I know how often you guys do it for me! Now.. on to the subject at hand.. Um.. wow! I just turned to my husband and told him how lucky he was his parents don't have dementia.. and if I ever get it I hope my family throws me in a nursing home instead of putting this burden on themselves! You and your father deserve a medal or something for what you're doing. I can't imagine ever having to clean my mother after doing her business. The worst I've ever had to do aside from listening to some of my mother's issues with her health thingies.. was right after my foster mom had lung surgery she wanted me to itch her incisions with a baby wipe. She took her top off revealing her bare back which was sliced down the middle and stapled back together and I had to really scrub at it with a baby wipe because it was itching the heck out of her. That was a horrible thing to go through.. but your ordeal was worse, and I imagine your father has to deal with it far more often. I feel for you, I really do. I can't imagine how much this is tearing you all up. I'm sure somewhere in your father's mind he's wishing he could just put her in a home.. how he finds the strength not to is beyond me! I know I wouldn't be able to handle a few days of it, let alone years like he is. I wish I could offer some sort of support or condolences or something.. I also wish there were some other option of dealing with this aside from putting your mom in a nursing home. I wonder.. is that option being debated yet? I don't really think it's as wrong as your father believes. It wouldn't be hurting her any.. and it would save his sanity.. and I'm sure he'd still visit everyday. Is it something you've talked about yet?
3 people like this
@AmbiePam (48108)
• United States
13 Jun 11
I've begged him to put her in a home. I told him he can take her out all day and I'd take her some times during the day as well. She can hang out with him every step of the way if he wants. But for goodness sake, she would at least be at a nursing home at night and he could get some sleep! (She wakes him up multiple times a night asking when it's time to get up, and asks him what is she supposed to be doing, says she doesn't know how to get back in bed...) He said no. His family is really stubborn and they believe you "take care of your own". And they were such best friends, that I think he believes he is letting down the "real' her if he did so. My dad told my sister and I long ago if he was ever that ill to put him in a home and never ever come to visit him. Of course we would visit him, but he has been adamant forever that we were never to try to take care of him ourselves.
• United States
14 Jun 11
She's still so young too.. I mean she could live like this for another 30 years!! Does he realize that? Well.. hopefully someday soon he'll just get so tired of it that he will look into a nursing home. I'm sure the real her would want him to put her in a home.. she wouldn't want to put this burden on him.
@Masihi (4228)
• Canada
13 Jun 11
Wow, this must be really difficult to deal with, and on top of it all, you're missing your mother as she once was. It's really sad losing a loved one to dementia, or any kind of sickness. I really do hope you can get support from agencies and the medical community as time goes on, as what your father and you are going through isn't healthy. It's okay to seek help when it's needed. I wish I can comfort you, but I'm at a loss of words, so I'll just send you 2 hugs - one for you, and one for your father. Hope things work out to something more manageable soon...
• United States
13 Jun 11
Hey Darlin'! I don't know your financial situation but have you considered getting a visiting nurse or hospice visit in a couple times a week to give you both a respite from the tensions? That, I'm sure, would help you both mentally and emotionally..You're in my prayers..
2 people like this
@AmbiePam (48108)
• United States
13 Jun 11
She worked most of her life, so we got her on disability quickly. Next month she is finally eligible for a home health care nurse to come in twice a week to help her bathe and do basic tasks. None of us has had the money to do something outside of what Medicare will do. I know my dad is really going to be relieved when the home health aide starts coming. She's eligibible for it in July, although we have been told it could take until August to have the paperwork go through.
1 person likes this
@GardenGerty (96645)
• Marion, Kansas
13 Jun 11
I keep forgetting that she is so very young. I am glad that her disability kicks in this summer. As many have said you guys need help. It is important to take that help so that you can remain as her family and not just her care givers. Does she express any interest in things that she used to do? What did she teach, I have forgotten.One lady I know of, when they did put her in a nursing home thought that everyone was her employee and loved it.
@daeckardt (6245)
• United States
13 Jun 11
The fact that she is only 51 is scary to me. I am 51 myself. I hope I never get to that point. I never married or had kids so there would be no one to take care of me if that happened to me. I'm so sorry to hear that your family has to go through all that. It must be really difficult. I hope that your family is able to deal with this well.
2 people like this
@daeckardt (6245)
• United States
13 Jun 11
I think it would be worse putting someone else through a living hell. If it isn't a family member, it would be a staff member at whatever facility they decided to place me in because obviously you wouldn't be able to take care of yourself.
2 people like this
@mentalward (14697)
• United States
12 Jun 11
I feel so bad for you, your father, everyone involved who must deal with such an emotion-stressing situation. I wish there was an easy answer but there isn't, not without sounding cold-hearted, although sometimes you have to do what is best for the patient and that doesn't always mean staying at home, I'm sorry to say. (My sister had to go into a nursing center because there was no one in our family who could take care of her; she had muscular dystrophy.) But, there was one thing we found before my sister was at the point where she needed around-the-clock care: a day-care center for adults. A bus would pick her up and bring her to the center where they'd do crafts, play Bingo, all kinds of things, whatever each patient was capable of. Sometimes, it was a one-on-one care given to patients who were unable to do anything by themselves. They were fed wholesome meals (breakfast included for those who needed it) and were brought back home at around dinnertime, when most people were home from work. It was an ideal situation which gave us all a break from the stress of the situation without us feeling guilty. Maybe there is something like this near you that would be good for your mother as well as you and your father. I'm sending you all the positive energy I can to give you strength to get through such a sad ordeal.
@mentalward (14697)
• United States
12 Jun 11
I apologize, I said "...BEFORE my sister needed around-the-clock care..." when I meant to say "... when my sister needed around-the-clock care..."
2 people like this
@GardenGerty (96645)
• Marion, Kansas
12 Jun 11
Amber, dear, this too shall pass. If you were not helping your dad you would also feel that your soul was hurting.You cannot escape this part of the journey. No going around it or skipping over it. I am glad that sister got to have a taste of the situation. I know that as long as you can, you and your dad will work on keeping your mom in the home. Is there any place that you can get some respite care? Let her go stay overnight or over a weekend? Is there any place that offers senior day care in your area? Often, when they are managed and adjusted, anti psychotic meds do help with these behaviors. Feel free to send me a personal e mail or whatever you need to just to vent. My family has not had to deal with dementia issues, other than my grand dad and he was closer to 100, and I am sure some of his issues were related to other illnesses. I just have seen this in nursing homes. Eventually that is the safest and happiest place for some people.
@AmbiePam (48108)
• United States
13 Jun 11
The closest place she can go to stay overnight is her mother's home ( 2 1/2 hours away), or my sister's (3 hrs. away). My dad takes my mom to her mother's every other month on my grandma's insistence. I don't think my dad would take her to a adult daycare. She is good at making you feel like you're hurting her feelings. And she was such a wonderful wife and mom that I think he believes he has to do this without taking her to something like a daycare. We both know she would come home from that daycare, cry and complain the entire night until it was time to go in the morning again, and then throw a fit one more time. And let me tell you, she can make you feel like a dog if she doesn't think you're treating her right. However, in July she will be eligible for someone to come in and help my dad two days a week. Helping her bathe and stuff. That should give my dad a couple hours a week away from her, time I won't have to watch her either.
@paula27661 (15899)
• Australia
13 Jun 11
My heart goes out to you my friend. Your mother is only a year older than me and it is so hard to imagine living with that condition so young! I do appreciate that she is the one that is not suffering as much as the rest of the family; it must be so heart breaking to see her the way she is now! I will keep you and your family in my prayers… Hugs to you AmbiePam...
2 people like this
@Opal26 (17691)
• United States
13 Jun 11
Oh my sweet dear Amber, how I wish that there was something that I could do or say to make you feel better or take the pain away in some small way, but I just don't know how to do it. I know that this must be so very difficult for you and your dad to have to deal with on a daily basis. (I'm leaving your sister out because I know the background). I love you like you are my "lil sis" as I've told you so many times and am here for you, no matter what in whatever way you need me. Am going to send you a private email. But, you are a very strong young lady and have to be so for your dad. He needs you more than anything and I know how much you love him and your mom. Hang in there hon, will write to you later~Love, Les (your other "big sis")
2 people like this
@Shaun72 (15968)
• Palatka, Florida
13 Jun 11
This sounds very sad. I feel really bad for you momma that she is going through this for you and your dad for having to deal with seeing your mom going through this. It sounds really sad to me .I will keep you all in my prayers.
2 people like this
@lilybug (21148)
• United States
13 Jun 11
I cannot even begin to imagine what you are going through. I am a person who has very little patience and I don't know if I would be able to keep my cool like you and your dad have seemed to be able to do. I commend you and him for dealing with it as well as you have been however emotionally draining it has been for the both of you.
2 people like this
@bunnybon7 (35475)
• Holiday, Florida
13 Jun 11
iam so very sorry dear. im so afraid this is going to happen to me and im sure you worry about it to. i wish they could find a help for this terrible thing that makes us in to a person we have never been. what a painful thing for you to deal with. hopefully something can be worked out for you all or something will be discovered to help her and all of you that love her.
@carmelanirel (20979)
• United States
13 Jun 11
I'm sorry Ambie, I wish I can reach out and give you a real hug, I feel you really need one. I will be truthful, I don't have anything to say other you and your dad are wonderful, I doubt I would have the patience..So your sister did stay with your parents during this vacation? If so, does she now understand what you and your dad go through? It would be nice to have yet another member of the family to help with your mom..
2 people like this
@cynthiann (18619)
• Jamaica
13 Jun 11
This is worse than anything I have experienced although a close friend of mine has Alzheimer's. I have tears in my eyes as your mother is so young. What a trial for your father to go through and for you too. This is not the wife he married or the mother you knew. This is a living nightmare for all of you. I am worried most for your father. Is there any kind of facility to which she could go for a weekend or Day care that would take her? Is she receiving any medication that could help her? I am at a total loss as I do not know your medical system or what could be done to help you. My heart is bleeding for you. Perhaps now your sister will do more to help. Every prayer and blessing is being sent to you in the hope it will ease some of the burden you are carrying.
2 people like this
• United States
12 Jun 11
Ambie this is taking a toll on your emotional being and it is quite understandable for you to feel this way. It is not easy, though I don't have family first hand experience I have seen some dementia patients. I am glad your sister had a chance to see and experience what you and your Dad continually do. It is definitely okay to vent and let it out, as it is a lot for you to hold in and carry. Life just is not fair to a great many as your family, I will continually pray for strength for you and your father, as bless his soul for being so patient. Maybe he is appearing patient but too needs a bit of a venting moment as it certainly has to be really hard on him as well.
2 people like this
@jillhill (37386)
• United States
13 Jun 11
I can only imagine what's it like....she is just a former shell of herself...and I have seen how it destroys relationships. LIke they say she is just fine. Many times they revert back to a very happy time. I have a friend whose mother got Alzheimers...she reverted back to the days when they first met..she would introduce him to everyone as her boyfriend. She did get violent...and had to be moved from one place to another....after a while she didn't recognize her family...I do know somewhat what your are going through. My grandmother had what they call hardening of the arteries. She thought we visited her by horse and buggy...in fact I never knew my grandmother any way but very poor mental health...I don't know what I can say to make you feel better....just send up a little prayer for both you and your dad. I am however sending a big hug for you!! Can you feel it? If you can't I'll just squeeze a little harder....hugs sweetie!
1 person likes this
@catdla1 (6005)
• United States
13 Jun 11
Hi Ambie! Aren't there any support services for family members? It sounds like you are at the breaking point, and it seems like there should be something available from medical or religious organizations. Maybe even some one to provide respite care? What about a center that can provide afternoon care on a daily basis? You and your dad are doing a yeoman's job with your mom, but it's a long path, with unfortunately a sad conclusion. It sounds like you and your dad have become islands in your mom's care, without backup. That's just not right. Hugs girlfriend!
1 person likes this
@carolscash (9501)
• United States
13 Jun 11
I feel sorry for you and I prayed as I read this that I am never like this and that my children will never have to suffer like this. I know that dealing with demetia can cause so many types of behavior issues. My grandmother had a touch of it and she suffered some, but not nearly to the point of where your mom is. I believe that you need to find someone to help you and your dad out so that you can get a break. Maybe you could find an adult daycare that is for dementia patients.
1 person likes this
@ebuscat (5949)
• Philippines
13 Jun 11
For me i don't think so it is done by house but the one who is doing it is the person only.