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whew! my oldest daughter came over and nite and let me go home and sleep in my own bed. it was heaven. I forgot what my house even looked like. It is going to be so hard to go back. Especially since my dog and cat spent the night snuggled next to me. sometimes its really hard to go back but i will. It was nice to get a break. and......i took a shower so now i dont smell! I know today is poop day...my mom can go for days without one. she hates it when i go in and get it lol. i think i hate that to. have a great day all. huggles.
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Carmen,
I have found that it is better to have a few people help rather than one person. Like you said, when one quits, you are left holding the bag as they say. One of my ladies could not come for 3 week because her husband had an operation. I was so glad that I had 2 others to fill in the gap. If your mom starts the guilt trip think about this. You were not asked to be brought into this world. That was your mother's choice. You were HER responsibility. Your mother was never your responsibility! However, you chose to be the caregiver. Big difference. Tell her you care for her because you love her, not because you have to. She had to care for you. It was her job to be a mother!!!!!!!! Worked with my mom, good luck
Linda
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Hello all!

For a little comic relief I want EVERYONE to know that my mother has in fact NOT had a BM today!

I have had the best day in months. That's why I am so cocky. My husband took a vacation day and we went to lunch and a matinee and ice-cream. I thought I was in heaven and... here's the good part, when i got home I did not get beaten up emotionally.

I didn't the day was going to be good because she woke me up at 4:30 demanding that I open a slit in the diaper because she couldn't pee and carried on for a good while and told me I hated her.

As far as help goes Linda, I have a combination of services and people. I only had one person who stayed with my mother during the day. I am a school teacher. This lady quit and all h broke loose. I never want to be in a situation like that again. I have to have a few people who understand her and who she trusts. She has been very upset with me for bringing in so much help because she raised me and payed for my college and wiped my butt..... But, at the end of the school year I almost had a nervous breakdown because I couldn't handle it all and I missed a lot of work. I am using the summer to get this set up so even thought I am not teaching I continue a routine. We would rather cut on other expenses but have the help.

You are right about this site being a little respite for all of us. Thank you all.
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Oh, ddarkangel! We all whine!!!!! Sometime, it is all we can do. So, don't worry about it at all. I whine whenever mom asks for something for the millionth time! Have some cheese for me!
Linda
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linda thanks so much i will look them up. I know she needs to have other people here. The part that is hard is that I dont know how long she will be alert and its hard to think about spending too much time away before she gets to the place when she wont be alert anymore. Its such a balancing act. I know that as a nurse this will add so much seasoning to what I do every day in the ER. I really have always respected the parents I see who come in with kids who have chronic health issues. Just the day to day management I dont know how anyone does that. I know I only have a small taste and I am whining! wah wah! Thanks to all of you for being at my pity party! going to get some whine to go with our cheese! I know I am the only one whining you all are amazing and I am getting so much from reading about how you all cope from one day to the next.
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ddarkangel,
Let her get upset, she will get over it. My mom prefers the other helpers because they spend so much time with her!
I have an agency here called Comfort Keepers. I think they are a national chain. They have been wonderful.. You can hire someone to just be a companion and the rates are much lower. Four hours a day, three days a week is a great help. That is: breakfast, shower, lunch, some laundry and visiting by a really caring person. You can go out and take care of yourself. Try your church and ask around . I found a person who has been with me for 3 1/2 years by asking a secretary at my dr's office if she knew anyone! She asked around and that is how we found her. She has become family. Just about every Saturday night she comes to stay with mom. She calls on all our birthdays, sings to us and just loves my mom. I can't ask for anything more! But the most important thing I did was set boundaries. "Mom, this is not a hotel.! Mom, this is not restaurant and you don't have choices!!" It works!! Good luck,
Linda
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wow linda i am so jealous! We are so new to this whole thing...i thought we were at the pearly gates when we brought mom home but dang she "perked up". I know they cant tell you how long but myeloma without chemo......geesh...My brother and his wife own her place and we were able to get her money together to help pay for a few months. I am currently working without pay but need to go back to work. Its funny, at first I thought I would need a nurse but now just need a sitter and who knows next week? That is the hard part making the calls. We started out by getting her everything she wants and catering to her every whim..that was my first mistake lol....when she gets someone else in here who isnt related to her she will be so upset. My kids need me tho and I have to start drawing some lines so I can go back to work. We keep joking about being in prison but cant decide which one of us is the warden...her or me! And as of today.....no poop! waiting waiting wating.....
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ddarkangel
Bowel habits!! Did you ever think that you would come to this????? After dad died, mom wanted to stay in her home. We let her, with a live-in, for 4 months. As soon as the deck, ramp and bathroom were done for her at our house, we moved her. Didn't give her a choice. Sold her house and a builder knocked it down, rebuilt a house on the site. It was tough on all of us, but it had to be. The money she has is from the sale of her house, and will take care of her for years. I am lucky that she is fully cognizant mentally, but she is fully dependent physically. She can walk short distances, has Parkinson's, and high blood pressure, incontinent and is over -weight. She wants to go out shopping, but doesn't realize how hard it is for me to get her out of the house with my back. I try, but once every two weeks is about all I can manage. So I set boundaries. Everyone knows that is my mantra!! Don't give up your life and self identity. I go shopping, lunch with friends and spend time gardening. Every Saturday night, the hubby and I go out to dinner or down the shore during the nice weather. She has a sitter for Saturdays and I have help during the week. Been doing this for 3 1/2 years and it seems to be working. Good luck to you.
Linda
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wow carol you hit me on the head. I am always in the "whats next" mode. Guess because I am a single mom, running two households right now and trying to figure out how to go back to work. How am I going to take care of everyone? But I dont worry about taking care of me...I am always last lol. Its very hard just to be in the moment and enjoy the moment I have been given without doing something. My mom has noticed that sometimes. I have two brothers who live out of state, and if it were not for my kids I dont know what I would do. Its just such a load for my 11 yr old and she is amazing. I know she is teaching me things. ahhh another day another pull up! thank god for coffee! good day all!
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DD touched a cord with me. I've spoken to groups of professionals often - nurses, doctors, social workers, etc. In the end they will come up all teary and say, "You are right. When it's MY mom, it's entirely different."

And sometimes, when you are in the medical field, you know "too much" and are always way ahead of yourself. It truly is a day at a time, and every day will be different.

Hang in folks and keep coming back for company while you travel this road,
Carol
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cat you dont know how much reading all your posts helped me today! My mom thinks I was born to wipe her butt and she reminds me of all the diapers she changed for me when i was a baby......so i think I should start counting lol......It made me smile just to know I am not alone!
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Darkangel & Carmen -
thanks. Today was my day to feel overwhelmed & reading your posts cheered me up. This site is a mini-respite - sanity check - smile station rolled into one. Poop is a hot topic at my house.
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Thanks carmen....is your mom with you at home? I understand when your mom gets like that, it really is hard to blow that stuff off some days. Sometimes my mom is so normal and good and i miss that little slip into the confusion and then I realize I have to be the one to set some boundaries. She wants me to go out and get all this crazy stuff, and I really do try. I know you have been doing this alot longer than I have. I have a 12 yr old at home and I am staying at my moms for now so I am splitting myself between two households because mom wants to be in her home. I hope I can keep doing this as long as she is here-havent figured out what to do when school starts tho. What kind of help do you have at home? Have you decided against nursing home care? It is great to talk with you...I so appreciate it. I was laughing reading some of the older posts about the bowel habits......At least I am not the only one in town who talks to her mother a good part of the day about poop! nite nite all....sleep well!
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It's comforting to know that there are people to really listen and understand what we are going through. When I read stories about what others are going through I can identify with so much. The hardest part about caring for my mother is not the doctors, meds, financial and physical issues - its the emotional. She is so angry with me all the time because she is frustrated with her life and takes it out on me. She doesn't think I care about her and thinks I've abandoned her. She would like for me to spend every moment that I am not at work with her so she can tell me everything that is wrong. I spend so much of my day caring for her in so many ways but I am trying to carve a life out for me that's not part of her life and needs.

My mother gets uneasy with new people and so do I. I have to go through teaching them about her and keeping an eye out. I've realized it's worth it because I won't hold out if I don't get people tp help.

Darkangel, tomorrow will be a new day. I will keep you in my prayers.

Carmen
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That's right take 1 day at a time..
CLL007
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Will keep you in my prayers, hang in there tomorrow is another day.
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How do you keep yourself going in the days when you keep answering the same things over and over? I told my mom its like the movie "50 first dates". Every day we go over the events of the last few weeks and she cant believe she has said and done the things she has and we laugh. I am grateful for the laughs and then I trudge on for awhile. I know the times to come are going to get harder and everyone assumes that because you are a nurse you automatically know how to do this stuff, but when you transition to daughter and your mother gets angry or you hurt her unintentionally you just dont have anywhere to go. I really do know its time to start getting some outside help. Its just that she will be uneasy with other people she does not know so I am dragging my feet......I hate myeloma. Its so hard not knowing where she will be one week to the next. I know i know, one foot in front of the other...thanks you all for listening...i feel like i have found my soft place to fall here...no judgements and just acceptance - you dont know how freeing that is........
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I'm glad you're getting some help, dd. You mention of the lucid moment when your mom wanted to do something for YOU, brings back memories. I saw that with both of my parents - a moment out of the blue when they would be lucid and caring - it would drill right through me. And then it was back to dementia land.

Hang in. You're a caring daughter doing everything you can. Get the help you need to stay sane.

Carol
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carmen how do you put on that shield? do you have an extra? I think i hide behind chores like dishes and laundry so i have things "to do". always finding things "to do" keeps me from having to deal with her constant running me around...she is going to be very dissappointed when a real nurse comes in here....who wont run out and get her stuff on a moments notice.......lol...thanks for caring....
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Carmen is right get some help. Your a Great daughter for taking care of her. Always remember that. I lose it but I just walk away until the point of her verbal abuse towards me and my Husband who is also disabled. Take care of yourself.
CLL007
Cindy
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ddarkangel

It's ok to lose it -just go on from there. You are under a lot of emotional stress watching your mother deteriorate. I get feelings of hate and then love and then guilt. It's a roller coaster. Get as much help as you can for the house. Even if it's someone to sit and watch tv with her while you are "off duty". Any money you invest in this will be toward your mental and physical health.

You are not going to hell because you didn't take the easy route. When you start losing it too often it's time to get more help in the house. You are a great daughter and sometimes you are human first. I put my armor shield on but there are days when it does not protect me.

Take care of yourself,
Carmen
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Wow Roxie, so glad to find others like me....i am a nurse and of course who gets elected to take care of mom 24/7. I have quit and lost it so many times i cant tell you.....one nite my mom was so bad we had a yelling match at midnite because she was yelling at me to vacuum....i told her i quit....i would put her in the nursing home and i had to walk away and take a time out.....the next day she made me cry when she told me in a lucid moment how she saw how hard things were for me and she actually asked me what she could do to make things easier for ME.....I have only been doing this for a couple of months. Hospice already. They dont do very much. Drop off drugs give a bath a few times a week and cya. I guess I am going to have to get help now to come in and take over for a bit to get a break. I am trying to appreciate the moments that are good because I dont know how many I will have, but sometimes the sound of her voice is like fingernails on the chalk board lol..i know i am going to hell...these are the best and the worst days. I am so happy to have found this board.
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you aren't a bad daughter and you know it or you wouldn't be concerned about the welfare of her. She is manipulating you mine tries everyday and I just nip it in the bud fine thats what you want do it but do and well you know the old saying poop or get off the pot, thats me thru and thru I don't play games I don't think she will ever get it thru her head yesterday she was taking the remote control to her room she has one for her tv and I walked into the house she goes Oh I never saw a dog like yours it was going to chew this up so I was going to put it in my room for safe keeping READ MY LIPS "HOW DUMB DO I LOOK" my dog chews bones nothing else just bones this is not a bone I will take it thank you very much and now willhave to train my hubby to put it up really really high. speaking of bones do you know how much those things cost? Well if I don't hide them she feeds them to the dogs all day long. I am going to suggest she buy them some I have to hide everything which makes life a little harder because it take s more time to get stuff done and I have now gone back to teaching sunday school and my time is very very limited. I have told her repeatedly the dogs only get a treat at night I try to train the dogs so they know exactly what is expected of them and when they get their rewards. Not just willy nilly and all that stuff is not good for them anyway. Its always something.
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I Love to hear stories with happy ending and yours was great. You are very lucky to have found a place where your Mother is being treated with kindness. I was a Nurse( CNA) for 10 yrs. and decided to move on because of the way the Resident's were being treated. I had so much compassion for my Resident's I even took there clothes home to wash when there families were away. I'm very happy for u and your family.
CLL007
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Please contact your local "Council on Aging". They may be named something else, but every state helps town to develop their own department. I can't tell you how helpful they were to me. They helped me fill out lots of paperwork to get the most coverage from Medicare and then Medicaid. I even sent the Selectmen of that town to let them know how much I appreciated the help I receive. It allowed me to place my mother in the best environment. The nurses where she is now are always telling me how much they love her and how she is always helping other patients in small ways with hugs and kisses.

My mother didn't come to this place easily. She had been wandering downtown at 2AM and 3AM with the fire department returning her home. Unfortunately, she sometimes would take a short-cut on her way home and she would fall and lay there until someone heard her calls for help. This, more than anything, made us see that we needed to take action on her welfare.

There were many little and big things that urged us on. Don't ever feel alone...there is help out there. My mother continues to be happy and recognizes us and other family and friends who visit her.

/njb
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Roxie, crying is the best way for me to release my stress, CRY by all means cry as much as you need to. You are at a good place when venting here because you are correct when you say no matter how alone you feel - there are others out there doing the same or sometimes they may have more to shoulder. Knowing God will not give me anything I can't handle doesn't mean I don't need to breakdown on occasion. Know this we all understand and support you.
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You are welcome. It's so hard to be cool and rational when someone is manipulating you. If it's not going to kill her, just say, "fine." And go about your business. She knows what she is doing.

Hang it. We know it's hard.
Carol
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Carol,

I really hadn't thought about skipping the night time meds. That would have made it so much easier. She hadn't had a bite to eat while the caregiver was here and yu are right going to bed like that wouldn't have been the end of the world. She kept us up all night calling me over and over again.

As much as I hate to admit that it's verbal abuse - it is. All of her arguments were centered around what a bad daughter I am.

Thanks Carol.
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There are calming meds that aren't so sedative that they make people zombies (when used correctly). You are being abused and can't continue this long-term. Please talk to her doctor and see what can be done. (An aside - she may not be this controlling with someone who isn't her daughter).

Her whole scene seems to be centered around controlling you. Would it have been horrible to skip the meds and just go? Some meds you can't, so I'm not suggesting this without a doctor's approval, but sometimes it's best just to say, "Okay. I love you and want the best for you, but if you won't cooperate, you'll just have to skip it. See you when we get back."

Only you and her doctor can decide if this approach is safe. But, many times the battle is what she wants and it isn't worth it for you. It seems there are two issues here to chat with the doctor about - one, a new medication and two, can she skip a dose or take it later if a power struff ensures?

Take care of yourself,
Carol
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I meant to say "Politically Correct".
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