Does anyone ever feel guilty for losing it with a Mom with dementia?

Very happ to hear you got good results... keep us posted...hugs across the miles to you and mom.... I know she feels better too...

My mom is 80% better. She has had no angr or meaness in a week.
It is a miracle drug and I am en

joying her again. Thanks for all the responses.

You're not alone, waverun, in either your guilt or your dilemma.

I've had a very difficult time over the past year, being the primary, live-in caregiver for my mother. She has only mild dementia, so when I lose it and yell, she remembers. When I say things I wish I had never said, she remembers. So, sometimes advanced dementia turns out to be a blessing. How wonderful that you have memories of your Mom as a loving, caring person. And how wonderful that she still reaches out to you in moments of lucidity. You are blessed in that regard.

Don't be too hard on yourself. Do ask for help, though. I had to learn that. It's best to ask for help when you're stressed out, and not wait until things escalate.If your siblings won't help you, contact your local agency on aging and find out what resources are available to you in terms of support groups and respite care.

Also contact the National Caregiving Foundation and they will send you some wonderful material and helpful resources. Also contact the Alzheimer's Association.

I pray that you will be able to rest and take care of yourself, as you take care of your Mom. Your health is just as important as hers is. Let her doctors know that you are her only caregiver and that it's overwhelming you. Let your doctor know as well. They might be able to suggest other local resources for you.

God bless you!

My mom is on seroquel and it has been very helpful to her. Keeps her from having hallucinations. Stopped for one night and they came back. I agree that it is sometimes hard to know what to do. But a good doctor is essential when treating dementia patients. A good dr will work with you and you will be a team finding the right path for your mom's care. God nlrss you on your journey'

Waverun, my husband has been on seroquel for about nine years. OMG -- it was our first miracle drug. It is truly what enabled me to keep him at home while we gradually developed a broader treatment plan. Recently there was a 3-day delay in getting his seroquel presciption refilled. If I ever had any doubt that it was helping, seeing what would happen without it erased all doubt.

But ...

I know other people with the same disease my husband has for whom seroquel either did not work or made matters worse. Reactions to this and similar drugs are highly individualistic.

How will you know if seroquel is a good med for your mom? Try it. I assume the doc started on a small dose and that as the only new drug. Observe her behavior closely over the next days and weeks. Report poor reactions, if any, to the doctor. If it isn't a good med for Mom the doctor can select another one to try. Don't give up hope.

Does this sound a lot like trial-and-error? Yup. That is how it works. Based on many many factors the doctor starts with what (on paper anyway) may offer the best benefits with the least risk of side effects. And if that does not work out, it does not mean the doctor is incompetent. It means each human brain is absolutely unique. So, on to the next drug that sounds likely.

Reading the literature about side effects is OK. And it can help you to know what to watch for. But the first and foremost way to decide whether to use the drug is to have a good doctor, trust him or her to make wise choices, and monitor the results carefully.

Last year I was given a script to help with mood swings. I filled it, got it home, and sat and read the package insert, with all the possible side effects, cried, and took the pill. I am simply not qualified to make a decision based on reading a package insert. I doubt that you are, either. It was scary, but I either trusted the doctor or I didn't.

Has anything been said about what kind of dementia your mom probably has?

I expect you will get several responses telling you that seroquel should never be prescribed for older people, or for dementia, or maybe for anyone. Those are legitimate views with some evidence behind them. But this is the drug your Mom's doctor selected as the most likely to work. Try it. If it doesn't work as expected, try something else.

I know how scary this is. I remember sitting with the fact sheet in my hand and crying. But the condition I was trying to treat -- and that you are trying to treat for your mom -- is very, very scary, too.

Hugs to you.

Thanks all for teh very helpfull and compassionate responses. Update"

The Dr prescribed my Mom seroquel for her mood swings and outbursts.

Is anyone familiar with this drug? I have read the side effects. I am not sure this would be a good med for her.

Any input?

waverun, you asked if any of us felt guilty for loosing it with someone with Alz... yes, tho it was short lived... R. had been sundowning, pacing the floor and asking the same questions for HOURS... what time is it..... when are we going home and who is coming to pick us up.... I had not had a break in a long time. I could feel myself coming unhinged, no amount of redirecting was working,,, I finally screamed out... SHUT UP FOR FIVE MINUTES, THAT'S ALL I'M ASKING... she sat there for a few seconds and started again... I got up to go outside, and when I got outside I just started bawling, exhausted, frustrated, guilty, and there she was banging on the glass door.... the more I tried to ignore her the louder she got.... I walked up to the glass and said, if you'll quiten down, I'll come in... she spit on the glass!!!!! I don't know why it struck me as funny, possible hysteria?... But I started laughing, the bending over grabbing your stomach kind of laugh, and she did too. The whole thing was surreal in retrospect, but just like your mom coming and taking your face in her hands today, it's only temporary, the bad stuff.... and you are a very loving daughter, there is Nothing wrong with you... you are a caregiver..... and I don't mean to contridict anyone, but yes I take things personal sometimes.. but it only last for a few seconds..... then I know it can't be helped.... by them... I am not a robot, I get my feeling hurt sometimes... but I just move forward...... so the fact that you are aware you are grieving, that is wonderful.... we do loose them twice... and I really like what JG shared... wish I had known that then.... but I know it now....so yes, guilt is part of what we feel at times.... so hang in there, come back and let us know how you are doing, and share the guilt, it won't weigh as much if you share it with others... and to know you are not alone, a freak or a meany, just human taking care of another human.... hugs to you....

It's especially hard when it is just you doing the care giving. Under the best of circumstances care giving is difficult because so much of you life is given up for another. I agree with all of the above, but I would also suggest that you visit your doctor and see if an antidepressant could possibly help you.

You are a wonderful daughter and there is no doubt in my mind that you love your mom tremendously. Still you are losing your mom to her illness and you have also been laid off from work. You have a lot to cope with so see if you can get some help for yourself. Just a thought. Love and Hugs to you, Cattails.

Waverun, I think it is perceptive of you to see that you are in mourning.

I've recently heard Pauline Boss speak, and then bought her book, "Loving Someone Who Has Dementia." She is a well-respected researcher and clinical practioner who coined the phrase "ambiguous loss" when she and colleagues were working with families of soldiers Missing in Action. These people were mourning for a loved one presumed dead but they had no body -- no proof. That is a very complicated grief! She also worked with family members of the 9/11 tragedy, with similar issues. In her clincial practice she became convinced that family members of dementia patients also have "ambiguous loss" of a slightly different variety. In our cases, we have the physical presence of the loved one, and yet they are "not there" in very significant ways. She talks about the need to accept paradox. In my case, I know that I am both married and I don't have a husband. Those contradictory things are both true. Instead of a partner I have a dependent.

One of the things Pauline Boss suggests is to have a small ceremony to acknowledge each loss as it occurs. It can be simple and brief and it should involve at least one other person. For example, If your mother loses her ability to feed herself, you and your sister might sit and look at old photo albums together. Be open to the glimpses you'll still be able to see of your Real Mother, and cherish them.

The more you learn about your mother's disease and the more you learn about how other caregivers cope, the better equipped you'll become to put your love into practice in helpful ways.

You ARE a good daughter. Hang in there!

All great replies to my post. I have only had my Mom for a little over a month. we take her back and fourth form her home to mine. I have 6 siblings. None of them seem to want to get involved. My older sister does and tries hard to releive me on the weekends. But for the most part, It is just me and my Mom.

I do Love her dearly. I miss her so much. I believe I am in mourning..I wish this disease on nobody adn if I do ever get this disease, I will leave this world at my own hands. If people with this disease really understood thier future, I wonder if they would choose to leave now..

Best to all...

Today I do realize it is OK to lose my patients. It is OK to want to choke her sometimes. It is NOT OK for me to neglect my mental health. If I am not up to par, than I am no good for her. I am a good daughter. I am Loving and, I do realize she does not remember anything from moment to moment.

Thansk all---I appreciate input and the help.

Wow! Sounds like so much. A big hug out to you! i think one of the best things you can do is self care. Not sure if you are on a tight budget - but getting yourself a massage once a month could do wonders and that investment in yourself will ultimately give you more energy and more focus to do all the daily things. This is probably tougher than having kids - taking care of our aging parents. I have certainly lost my patience with my mom and she isn't even saying mean things to me - she is just in such great denial and so adamant that everything is ok and that she is getting better all the time that it drives me nuts! A less expensive way is practicing breathing - just taking a breath in the moment - which I know that's not always easy - as it's "the moment" that often that often makes us craziest - but if we can breathe (I am talking to myself here too), and notice 5 things around us - 5 things we see, 5 things we hear and/or 5 things we feel - doing this simple practice can bring us back into the moment. I truly wish you all the support you need - and thank you so much for sharing such vulnerability! :)

Talking to her doctor today is a great step. In dementia care, the pros know that you have to care of the whole constellation -- the patient and the family taking care of the patient.
NancyH's advice is spot on -- find ways to NOT take the meanness personally. Maybe imagine her as someone you don't know, or someone you know from church or your growing up, someone who you are taking care of for someone else. Sometimes that Jedi mind trick really helps. When you are in a happier place, like this morning, sit down and make a list of image of your Mom that make you happy: like a little stockpile of things to draw on when the going gets tougher.
ANd if you can swing respite care for her, do so. It will help you get back on your emotional footing. If you can't, maybe there is a volunteer in the community who could come, maybe someone from church?
Either way, keep your siblings posted. Don't try to protect them from what is going on. You will need their help and the more they know the better able they will be to pitch in useful ways. Good luck!

It's no fun living on a roller coaster is it? The old mom you have known for so long and loved, is starting to be replaced with a woman you no longer know. Getting old stinks for sure. Your mom is no longer logical and can't remember squat anymore, which when you think about it, is a blessing of sorts. While you were so sad and hurt at what she had said to you earlier, she never harbored ill feelings towards you the next day, cause she couldn't remember. So all was well again with her, which is the blessing part obviously. At some point during this path that you and your mom have found yourselves on, YOU are going to have to 'let it go' when she's mean and hateful to you. YOU are the one that's going to have to 'turn the other cheek' because SHE CAN'T. YOU are the one that's going to have to leave the room when she gets like this, before you do or say something that YOU will never forget. It's not fair, it's not right, but it's the facts. Roller coasters should be for going to Disneyland, not to have to live on. Sorry.