My patience is running out and I feel bad!

Your mum sounds like mine too. Because she also suffers from life limiting condition -canc in liver, lungs and large bowel with an ileostomy, and the latest peptic ulccer disease (diagnosed 3 days ago whe her Hb dropped to 8.0 -the oncologist and geriatirc psy personnel totally missed mum's signs and symptoms (mum was blamed for being difficult, 'potty' and very agitated-so she was started on anti-anxiety meds which I feel do more harms than good -sometimes unnecessary added stress as elderly if they suffer loneliness and depression, making them sleepy and suffer side effects of anti-anxiety -constipation, dizziness, even hullucination -can we really blamed them for being eeven more anxious and 'difficult and turning to their 'loved' ones. I am very aware of this 'catch 22 situation as I have been caring 24/7 past 5months with little help from those services which are meant to provide respite for the carer-most of the times I hear these words" oh, you are such good daughter, but you have to care for yourself etc; when I felt the need for support esp. the Hopice team , I call them BUT I never have any isit within 12 hours of call. I ended dealing with mum by nyself (taking her to the private and expensive surgery (because these services are so expensives that's why the treating cancer team refers mum to Hospice yet the team hardly uphold the values which are in 'black and white print -cover page of their brochure!!! I am told they are primarily to support pain issues -even with this in mind I still ended up having to take mum to the local GP to get assistance/support when mum developed rash etc (reacted to morphine!!!) In short, picture a 80+ depressed and 'frigtened patint -because she feels helpless and couple with side effects of medications, would he/she not allowed to become even more anxious and depressed-it is because of the situation I keep a very tight 'wath' on what tablets got put into mum's mouth!!! I am aware that she will leave us when the time come, meanwhile if and when investigation are appropriately carried out by the medical team and the carer has a disgnosis to work with, we will feel less guilty and more understanding towards our loved ones who once take care of us day and night LIKE most of are oing in one way or another. I am human, I do get angry with mum when she decides not to cooperate ad I am trying to admiister her care, I have unplesant thoughts 9ie turn to God and ask Him to help mum deal with pain and discomfort and even side effects of her disease ) Above all, grant me the patience and wisdom to care for mum and not to feel guilty for guilt may make us less effective in our support towards our loved one BUT understanding the cuse/s of their non-conforming behaviour allow/enable us to be more forgiving , like most of the carers have shared. I am so pleased to have come across this web page. Thanks everyone for sharing. Readig through all the sharing enable me to have better sleep. MindfulJuliek

I spend a lot of time at the NH I see all different types of people all different ages, illnesses, complaints, personalities, behaviors, story's, actions, etc. I also am a hairdresser for a lot of elders. So I unfortunately see both sides and my own personal experiences and feelings and my reactions to conversations and how the elders react to different situations.
Now I have a aerial view so to speak. What I mean is I got a good view of it all.
I see how at 5:00 at the NH no matter how confused a person is it's dinner time and they all get agitated if the are not seated or being served by 5:00, then to complain about the food and not eat, or play with the food. This is because it's routine. Ex: At work I have a customer at 9:30 every Friday and it's 9:35 and I am running late there could be a reasonable explanation, it does not matter, she's on a clock like their lives are the focus and nothing else is.
I see people at the NH tell me the same story or yell out loud "help me" all day long. One woman calls everyone an idiot, one woman say "I LOVE YOU" top everyone, one woman asks for coffee every 2 minutes, one woman waits for March 15 that's when her kids are coming to visit. One woman cry's for her son all day, my Mom thinks she works there and goes to party's. Some yell I want to go to the bathroom when they have a depends on and were just changed. One lady takes her clothes off as soon as they put her shirt on the aid turns around... she has it off again. The only time this stops (for the most part) is when they are being entertained. Music, Movies, someone chatting with them even if it's crazy talk.
Imagine you get up in the morning and the first thing you do since you were able is go to the bathroom. Then one day you get up and can't get to the bathroom without assistance and you forget you need assistance and still have the desire, by habit, you go to get up and go to the BR, but you can't get out of bed and don't know why?
Or were you ever on vacation and woke thinking you were home and get disorientated and forget where you are for a moment?
Our lives are habits like a foundation of who we are.
For months my Mom would ask were is the soap I showed her every day, every time she went to the bathroom or needed to wash her hands, until I realized liquid soap was not soap to her. I got her a bar of soap and that solved one problem. Now in the nursing home after she got into the new routine she does it automatically. What all this means is elders need to feel independent yet need attention to needs. They need routine for comfort and clarity. At the same routine spoils them to the point that they get so used to routine that. if timing is off they feel restless and complain.
If you feel like your losing patience think about how they feel. They need more patience than one can imagine because they don't feel well, can't sleep well, take medications that don't always make them better sometimes worse in other ways, can't hear well. see well, hurts to move, hurt to sit all day etc.
I am rambling a bit but I am trying to say they all have good reason for their actions and it's not to drive us crazy. They need us but don't know how to tell us and they do not understand that we have trouble understanding. We can only do our best to make them comfortable and if it's not tragic don't stress out save your patience and focus on things you can and need change.

This may be a different topic but my mom gets upset with me if I ever say anything twice. Sometimes in a conversation if someonen doesn't acknowledge a point I say it again, and she gets exasperated and says, "you said that.". Or to prove that she is alert she will say, I know that!

I often have to start a conversation by asking her to bear with me, that I know she knows these things, but to establish the basis for the conversation today I will be saying some things she already knows. Someone might not understand something that was already covered or they were not paying attention and if something is being repeated for the benefit of someone else she gets impatient that she is hearing a point repeated.

She is more and more impatient. When sitting at the table, she always taught us to wait until everyone is seated and served, but now she digs in and starts eating the very first bite of food put on her plate. If we are in a restaurant she wants service right away and wants to get food quickly rather than sit and talk, even though she is quite slender and eats like a super model.

It is all quite interesting. I find that if we are kind to one another we can work through anything.

Wow. I've got to stop typing so much. SORRY for the long post. Once I get on my soapbox...watch out! lol

My mom began repeating stories around age 40. All of us kids would try and try to tell her..."Mom, you've already told me this story several times" and she would get SO MAD and argue with us. She drove EVERYONE away with that. At age FORTY. Dementia? YES and at an early age. The repeating and repeating and repeating continued and continued until just about a year ago. She is 76 now. She alienated her family and what few friends she had wayyyy back when she was in her early 50's. Now, it's late stage Alz and vascular dementia. She rarely talks but when she does, it makes NO sense at all...zero. I don't know which is worse really. She used to make things up in her head..stories about where she went that day, etc. while living at the NH. She never went anywhere. She still thinks she drives and points to a car outside her window saying...See my pretty car??? I really like driving it. She hasn't driven in 10 years. One cannot have a conversation with her but then one NEVER could. I kind of like her this way better except, it's hard to ACT like she is making sense. I've never been an actor or a fan of fibs or lies. Dad taught me to be truthful and be true to my word as a kid. Mom was never like that. I just wish the NH would take better care of her. It bothers me that she walks around all day soaking wet ...down to her shoes and socks. EVERY time I go visit, I have to take her to her room and begin the clean up process. It wears me out as she becomes STONE and won't help one bit with taking off socks, shoes, pants, etc. Yet, she is the ONLY person in the NH who walks NON-STOP all day long from one end to the other, to the living room, to other resident's rooms...NON-STOP walking. She's worn out so many pairs of shoes just in a month...UNREAL. I've tried getting the NH to take her to the restroom...she FORGETS that she has to potty. It's no use....no winning the battle. I am all she has tho...siblings have no concern for her at all and haven't for 6 years now. Guilt...YES. I feel guilty about not being able to go see her and CLEAN her up every day ...gas prices and unemployed here. But siblings SHOULD really feel guilty and they do not.

I once read an article from someone that asked his mother why she told the same stories over and over and she replied that she was not able to get out and had no new experiences to share and enjoyed talking about the ones that she did have. That helped me to have a bit more patience and understanding about that situation.

So many things may be contributing to your mom's behaviors. Many times the transition itself into a congregate setting can trigger a gamut of emotions that will trigger anxiety . She most probalbly waits for those evening calls and gets anxious when they are a little late. Many folks in these settings experience loneliness, helplessness, and boredom despite what appears to be wonderful activity programs. Sounds like mom is clinging to familiarity and focusing on mutual relationships that you both share. Perhaps you should discuss with her her feelings about her placement and try to go from there about how you both can help eachother through it.

So wise, southerngirl. Life is so much better when you quit trying to correct a failing mind, and just accept the situation and rechannel your energy into being pleasant.

I agree with the advice to get headphones and do your housework, pay bills, or do something else while talking to her is excellent advice. My mother is 89 and lives in the home with me. She repeats stories that she has already told me many, many times. I have started just nodding my head and saying uh huh every time she starts down the path. I used to try to tell her Ive heard the story before, but it does no good... she likes to tell the stories and she doesn't remember she's told it before. So I figure there's no harm in just listening again. I know the first instinct is to become impatient but I think this is just because we as caregivers feel helpless and upset at the fact that the loved one is losing her memory. I just try to accept it and listen. Once the story is told then they feel better.

Dear Cathy123,
Ask the charge nurse or the person in charge at night if your Mom is really sleeping or not sleeping at night. If she isn't her doctor can prescribe anti-anxiety pills that do help with sleep--as it does with my Mom. They are not sleeping pills per say, but anti-anxiety pills that also help with appetite and it also puts her to sleep. In your Mom's case, I think her doctor should intervene and examine your Mom. The home should know and keep a daily journal of all of their patients. If your Mom keeps repeating the same stories as if you've never heard them before or if she thinks that she's never said them to you before, it sounds like mild dementia to me. My Mom was exactly like that in the beginning of her stage of dementia. My Mom also suffered from insomnia--I think a lot of elderly people do--I've heard it many times from many different people.
I too feel very guilty when I do not go see Mom every day at hospice. I do go every day, but two times I haven't gone because of illness. And even when I do go every day, by the time the afternoon rolls around, she forgot that I came and tells bro and sis that I never came for 3 or 5 days. But bro and sis know better. Sometimes she calls me in the afternoon and wants to come home and doesn't understand why she cannot. And that makes me so very sad and hurt hearing her painful and pleading voice.
All excellent advice up there!! Please heed them as much as you are able.

Do you have a headset? I felt the same way when talking to my mom, because it's usually an hour or 2 of her repeating herself about minimal things, etc. I dread calling (she doesn't call me) and I feel guilty when I don't. A friend got me some great earbuds for my cell phone. I put the phone in a pocket (if no pockets, I put on an apron with pockets!), ring her up, and do housework while we talk. I mop, fold laundry, sort bills- I find that I can stay on the line as long as she wants and actually be pleasant the whole time; no patience required!

You have some good 'long life' genes to be thankful for. My mom (who died at 70) did not sleep much at night near the end. Luckily I was able to nap in the day when there was someone there. My mom had lost her hearing after open heart surgery so conversation was difficult. She talked and I listened and wrote any needed responses. You want and need some relief; mom will enjoy some new faces--see if someone will help the two of you. Good luck.

Excellent advice from both littletonway and Jam. You are doing all that you can. Your mom is safe and being taken care of. I agree that you need to cut back on daily phone calls. You need to prepare her for this. Just say "tomorrow I won't be able to call." Make up some excuse -- someone else needs you, going out of town for the day and evening, you are sick, anything. Start slowly until you have cut back on daily calls. No, she won't like it, BUT DO NOT LET HER MAKE YOU FEEL GUILTY. That seems to be a major problem that so many of us daughters have with our moms. Your mom sounds just like my mom although mine is still living on her own near me. I realize this has been going on my entire life (feeling guilty, being manipulated and controlled). Of course, I used to be able to walk away from it, but now can't do that. If you are not always there she may just reach out to others . . . such as partcipating more in activities where she is living. You sound like a loving and compasionate daughter. You have to take care of YOU too.

Cathy mom has dementia and that is why she repeats her behavior whenever you talk with her. She has care givers with her so you can rest knowing she is okay. Since you are the one initiating the phone calls it might help to start limiting those calls to perhaps three a week. You don't have to call every day and if something should occur, such as a fall, the home would notify you. And that could happen whether you call once a week or 10 times a week. You need to find a way to lessen the stress whenever you talk with mom, which means limiting what you talk about. My husband and I went through this with his mother, she would call us several times a day demanding to be brought home, it was always " you're a doctor, you can fix what's wrong with me".....talk about a guilt trip....lol. Bottom line is that you don't have to put yourself through that daily stress, mom will be just fine with a lesser number of calls per week and you will look forward to talking with her.

Patience; what is that in the caregiving situation? I really don't have an answer. Does she have other relataives nearby that could pop in to visit a few times a week? I can only imagine what my Mother would be like if I was that far away..not a pretty picture. I would never get off the phone. Even thought she is right here in my house her conversations are always about the same things
every day. I don't think the distance is the problem.

Is she able to participate in activities the NH provides? Sounds like you are a caring daughter and doing the best you can. You just can't beat yourself up over things you can't control.

Good luck! Deep breath..relax!