my husband same thing... i had to get rid of the only non family caregiver because dan wanted only family..... and i,ve had to quit my job to be with him pretty much 24/7 as he just does better with me.... the not eating and (not drinking for dan). it is their control they have over us.. and when they realize that look out... she does not like change that is most likeley the biggest root. You are doing everything you can do--- she has entered that zone where only her and her feelings matter... I 've been there with dan manytimes... they get very selfish but i think the root is fear-- they are so helpless and how do you trust someone with your very life (that you dont know) hopefully this will resolve with time. ans even if you undo what you have done --- its just delaying the future... there is a appetite stimulant called magenase ( or something like that ) that might help with the not eating.... i dont know what mom has cognitivley ( dan not much) but maybe taking the "harder" approach...( mom - i am sick and tired of this ) it is the BIGGEST problem in the world i know i live it..... But i did have some recent success with taking the harder tone with dan just the other day. He realized he was wrong and let me know he was sorry... now if we can replay the senereo out 20 times or so he might remember..... Your guilt isent gonna help - you have done all you can now it is up to mom.. to realize her daughter is ill and needs her help ( by cooperating) the other thing and this can be important... every new day - is a new day... just come in and greet here like nothing has happend the day before. Don't do the are you feeling better today mom. just say -- Hi mom, did you see the flowers are in bloom and move the conversation on... no response then you might just as well leave for awhile. there is still much intellegence underneath my husband -- and waht a sneaky , manipulative person he can be with the guilt... i am doing better with dealing with it but sometimes i thing a SNF might be to his advantage.... but at this juncture no.... what ever you do is the right thing to do... there are not many options so be kind to yourself. I know strokes are heartbreaking... every day... but you are inspiring , you are a good human being .... you are what every person aspires to be ... GOODJOB.... you are in a tough place but what is happening is out of your hands..... nancyl

I can affirm that you are doing the right thing. Your mom will not benefit from you falling apart. The description you gave of the life you had before hiring additional help is just not a manageable life. Your health is suffering as a result. Your mom probably isn't able to understand what you are going through. I know my husband has become pretty self-centered since his stroke. He was always very thoughtful prior to his stroke so I believe the change is stroke related. You know your mom best. It might be that a change in routine is unsettling for her or it might be manipulation. In either case, your response is to continue to do what you know is best for both of you. You care for her best by also caring for yourself. It's required. I am speaking as a caregiver who also has to provide 24/7 care for my husband who needs assistance with just about every activity of daily living. I hire caregivers too and, thankfully, have family and friends who have stepped up to help.

My approach in your situation would be to simply continue to greet her as you normally would. If she doesn't speak, continue to speak to her in a conversational way as you are able. Stick to your guns about the hired caregivers. Be sure they are doing their jobs well and then let them do them. It probably won't help to try to cajole her into accepting this change. Simply give her the information about what to expect each day and then let it go. Once she knows its not negotiable, she may settle down.

Now, make sure you start having vacations, birthday celebrations, dinners out with just your husband. Spend time with your family. It will make a world of difference in how you cope and even in how you care for your mom. I know it's not easy but it sounds like it's pretty important for you right now.

Best wishes,

Donna

Wish I had the magic answers you need but I don't suppose there are any to fit the situation! Now I have heard from other care givers that you have to let the patient alone in their behaviors for a bit then they change when they finish pouting over you not being there for her when she wants you to be there! Just by statures you can't be there every minute or hour and they won't die just be mad for a while until they get used to the change you make!

You gotta take care of yourself if not you will burn out like a candle! The more you wait on mom, dad, husband, wife or whomever the more they expect you to be by their side! That's a quick burnout trait for you!

Nancy,

First and foremost you need to take care of your self.

You are putting in way too many hours. That is the route to burnout and illness. Who will you be able to help if you are incapacitated?

Stroke is hard to understand. It really changes the survivor. The cognitive part is very difficult to understand because each survivor is different.

I think that fear is why they need "you". Nobody will take care of them like you do. But, you are only one person.

Give the reason talk to them as many times as they need to hear it. Finally, it sinks in. But, it takes along time for that to sink in.

Please take care of yourself.

Ruth

Kelly, Ruth is right. Change is not good for most of us anytime, with Mom it is worse because of the brain injury. She will adjust as you continue to keep to the new routine. Any change in routine is hard on any survivor. They just begin to feel "safe" and then have to start all over again.

No one likes strangers in their home, let alone caring for them. I, too, would not acknowledge her moods or lack of speaking. Listen if she has concerns, but if she knows you are comfortable with the good care she is receiving, so eventually will she.

As caregivers, we all deal with some form of guilt every single day. We second-guess ourselves, sure that we have done something wrong. When you take the time to tear it down and absorb the decisions, you will often find that you have done the best you could at the time and can always revisit it later.

Take this time to let things settle down and work into a nice routine. You re-eval in a month or so. Prayers and best wishes, Debbie

Kelly, Just reread what you wrote - you have gone way beyond the call of duty! What you are feeling is really false guilt. I think everyone who is a primary caregiver does this and that is why the first rule of caregiving is to take care of yourself. Personally I believe that you need to place your husband and children as I higher priority as well.

Your mother is not likely to like the change and that is understandable because change is frightening especially when the individual cannot control it. In all relationships, people tend to lash out at the person that they are closest to because it is safest. Control is something our survivors are forced to give up and they will manipulate the areas that they can. It sounds like Mom is doing her best to manipulate you with a sense of neglect. Often the stroke damages a persons ability to empathize. They become the center of their own understanding and really have difficulty understanding another person's problems. So you have a complicated ball here.

As you mother gets to know her caregivers and gets used to the new routine things will get better. My husband is now in a nursing home. Yesterday I did not get my usual welcome when I went in the room. Since he has aphasia it took a while for me to find out what is going on in his head. It soon surfaced that he was mad at me! I never figured out why. I have been doing this for over 7 years and have learned the quickest way for me to deal with this is to take a hard stand. He can be mad at me but I will not stick around while he does it. I told him that he should be thankful that I was there and I was doing my best to give him the best care possible. I also reminded him that he could stay mad at me but I would not stick around for it. Yesterday all it took was a walk around the perimeter of the nursing home and he changed his song. There have been times I have had to leave for the day. When he was home, it looked more like me going in my room and shutting the door for a while. This approach always means his anger/bad mood is short-lived AND I don't get mad in return and feed back into an unpleasant scene.

I agree that treating her matter of factly for now is your best plan. If she doesn't kiss you, go ahead and kiss her. Ignore the things you can and don't stick around for her temper tantrums. You may well feel like a shmuck doing this so it is time to give yourself permission to have a life and to have some respect. Go ahead and treat yourself to something special as a reward for all that you have done!

Ruth

Thank you for all the support and encouragement. I've read and reread the entries as to how to handle this situtation with mom and have taken the "stand back and see what happens" approach. Mom is being well cared for, she is starting to eat a little, still pouts around the house but there has been some improvement.

Tomorrow night is my night to stay with her so I'm not sure how to proceed other than to be "normal" in my activities with her and see how it goes.

Next week will be the true test of how she does with all the new caregivers as I've had my niece filling in here and there until everyone was free to work their complete schedules.

Mom seems to be making a connection to my niece and she doesn't want her to leave when the other caregiver arrives. I'm trying to convince my niece that the best thing to do is to leave and let mom adjust to the new routine but she finds it very hard to not be there for her grandmother. I'm hoping that she understands my concerns and steps back or this could be a long adjustment period.

Again, thank you for all the support!

hi kelly, i know mom has had bad hired caregivers in the past. maybe shes worried or afraid these new ones might be like the others, not caring for her properly, so she only wants her family there. since your moms stroke, you have been there for her. you are an amazing daughter. i'm sure after some time she will adjust to her new caregivers. i just pray they treat her right. you do need time with your own family and a big break, from your work, mom and your stress. your own health is very important. keep us posted on how things are going with mom's new caregivers.

lots of hugs and prayers,

kimmie