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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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Will keep you in my prayers, hang in there tomorrow is another day.
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That's right take 1 day at a time..
CLL007
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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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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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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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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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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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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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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 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,
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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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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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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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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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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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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DD, I'm so glad you had a night at home! I know how hard it can be to go back some days, but you will. We're thinking of you.
Carol
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Hi Roxie,
You have plenty to be depressed about. Watching the decline is so awful, and most of us know what you are going through, though you have your own version. It wouldn't hurt, if you haven't seen a doctor about depression, to do so. Treatment for depression isn't going to change your mother's situation, or make you cheerful about the decline. But if you are clinically depressed, it may make it easier for you to deal with, if you get help. Please do consider a checkup.

Meanwhile, keep coming back here. We know how hard it is.
Carol
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oooooh carmen, tried to talk to mom about comfort keepers. talked to the local guy and he sounded real nice. I have to laugh when i think about the conversation. i wont be using them for maybe 5-6 weeks but I want to try them at least once a week to make sure it will work out. My mom is trying to convince me that she has so many friends who will be happy to come over and sit with her.....and do her bidding....and wipe her butt......and listen to her orders.....without being paid .....all day........lol......i just smiled and said......."give me their numbers" lol.Then she told me tomorrow she is going to use her walker more so she can get to her wc to get out in case of a fire in case of an emergency so I dont worry., so I can leave her home alone for 12 hours. This is breaking my heart. She feels like i am clipping her wings and punishing her. I keep explaining patiently over and over what has been going on. I hope she is not so alert when I do have to call them. this so sucks, ya know medicare should subsidize us to stay home since we are saving them money and then everyone would be happy. I really need to go back to work and yet I will be missing whatever good days I have left with her. Soon she will be gone and so much of my time has been spent stressed out trying to cover all the bases. I really want to buy long term care insurance so my kids dont have to go thru this, but it costs a bunch. ok,,,,must go get more cheese for this WHINE..ewwwwwww i hate how i sound today..........
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That is why we are all here for each other. It's not whineing it's called expressing your feeling"s and that OK for u to do that we are here for u. I too get to feel that way crying helps......
Take care of yourself.CLL007
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DD, I love your humor! We need it. There are some programs in some states that do pay caregivers to stay home but it is spotty. Have you looked into your state's Medicaid waiver? Check with your state aging services to see if they can direct you to a program to get some pay for staying home with your mom. You may find something available for you at this time, but it will take some digging. Hopefully, this will eventually become possible for any caregiver who chooses to stay home with an elder.

Your love for your mother, and your humor (dark humor is all that we have sometimes) shows your spirit. We are with you. You are wise with trying the caregiving service slowly. You are wise in many ways. Keep checking in.
Carol
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Sorry but I'm changing the subject. But has anyone heard from Alice??????
CLL007
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ddarkagel,
Glad you called Comfort Keepers. They have so wonderful for us and so good to mom. A new woman came today and she is just as great!!!! If you have the local guy come and interview your mom, she might feel more comfortable with the whole idea. Did that with mom, and it really helped.I tell my mom it is like getting a new friend. Tell your mom that if her friends are just as old as she is, they can't take care of her. If she is forgetting, have her make a memory book with the new helpers. She can cut out pictures, write down memories of her family and thoughts for the day. My mom cuts out articles on gardening for me, birds for her other granddaughter, and articles about Ireland and music for my daughter. She presented us all with scrapbooks filled with articles that are so useful. Keep up the good work and keep writing to us.
Linda
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dd - Your Mom is like mine - she is in denial. it's too hard to accept that she is where she is. My mother still gets upset when someone comes in to take care of her when she doesn't need it. She'll say things like your Mom - :Give me my walker and I'll just take care of myself". It does break your heart. You are absolutely right - there needs to be an overhaul in our whole system. The baby boomers are getting old and the status quo as far as nursing homes etc. won't do. There need to be other more viable alternatives. In our cases we should get some kind of compensation because we are saving the state money by housing them. I have stayed home from work many days to care for her.
Hang in there - you are doing all the right things!

Carmen
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ok well i know i did something right....no poop for 6 days and today we have had 6 countem 6 atomic poops! THANK GOD for stool softeners lol! I cant cook so I know its not my cooking! I feel like I have birthed sixtuplets! nite all!
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HI dear friends old and new you are all in my hearts this belongs on blessings also my next door neighbors have offered to mow some of my large lawn next to their property and tne lower back lawn which will be so helpful since my son does not want me to do it I surprised myself by taking up their offer I have been so independent for so long but I have so much on my plate right now it will help me out a lot
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You are right I started last fall to talk to the men and women running for local office about health care and met one at our county RSVP Luncheon they give up every year for all the voleenteers and got up on the ole soap box and talked to him more about and I am going to join a caregivers and former caregivers group in my county and hope to be able to be a help to others and and make sure our voice gets out there-this little mouse in going to roar I am sure the husband is looking down and Oh GOD there she goes again you better give in she will not shut up until she gets her way,
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i love it!
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Dear Austin, You are so sweet, God bless you. Michele
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