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Cosmic40 Asked March 2013

How do I cope with the frustrations of caring for my mother whose dementia is getting worse?

My mother's dementia is getting worse each day and I am frustrated to try and get her to take medications and elevate her feet as they tend to swell. She does not answer simple yes or no questions when I ask her. She does the opposite of anything I ask her to do. I feel like crying every day and I just feel like each day is pressing reset and it starts all over again. I feel as if my life has ceased in order to be there for my mother who does not appreciate anything I try to do for her to be comfortable and safe.

deefer12 Mar 2013
Yes it will pass, but the problem is when and will we be capable of moving on and enjoying what life we have left! I have been at this for 5 years and really wonder if I will cope when Mom is gone. So many of us end up with PTSD and other issues after years of stress and the physical strain of care giving.
It's very important for us to find some kind of escape, even if only for a bit each day. I love to knit and read and exercise. Although I did neither of the last 2 in a while. My husband of 40 years lost his job 2 years ago and now he is at home all the time and is not a self starter or one to help out around the house. He is a "couch potato" and thinks of himself as retired. So I have that added stress too!
Three weeks ago I decided I couldn't stand being overweight and out of shape any longer. So I started the "Lose it" program on my computer and am doing walk aerobics or some other DVD exercise 2 times a day. I have lost 5 lbs and many inches so far. I have more energy and feel so much better. I also got my husband eating better and now that the weather is warming up, we walk outdoors.
Mom is in daycare 4 days a week from 9-3, so I try to to a DVD after I drop her at daycare and again in the evening after I get her to bed.
It's hard to fit in everything along with errands, grocery shopping, laundry and cleaning 2 apartments, and I have not been able to watch a lot of TV, but that's okay. I also just ordered a Nook tablet that comes with a free E-reader. I plan on spending some time outdoors reading like I used to.
Mom had PD and is in a wheelchair. She is a lot of work to care for as she can no longer do anything for herself for over a year now. She is very OCD and is always moving. She started a habit of clamping her mouth shut tight, about a year ago and it is very difficult and time consuming to get her to open it for meds and food. Sooo frustrating! Because she is very busy, she would have to be heavily medicated if placed in a facility, that's even if they would take her. As they cannot use restraints, chemicals would be the only option. So I plug along without the help of my 6 sibs, and get through the day as best I can.
Find ways to "get away" from the situation as often as you can and try to go with the flow as best you can.

starshine14 Mar 2013
Susan26 your difficulties sound like mine (& so many other folks on this forum). The forum helps me a lot, just reading it. A few years back I brought home our sweet pup (he had told me NOT to do that) and it took 4 days for him to speak to me or even look at the dog & over a year to smile at her. She has been the biggest help to me and now also, to my husband. He loves her now and plays with her (when he remembers she's there) and calls her his sweet girl. She's my life saver, as I get out daily as she takes me for my walks and even sometimes in the car to a park. She makes us both laugh. I feel my body tense and I snap answers/questions and I PRAY daily for patience and peace. I KNOW (don't we all?) that he can't help not remembering things or being mean or hateful. I feel my love for him changing. Changed. He wants to have sex and I am not interested and he can't really anyway. He make inappropriate comments.He's had bouts of anger but mostly is forgetful. Forgets to turn off water faucets, lights, take medicines. So for, he remembers it's time to eat! I'm tired, worn out, feeling depressed, carrying the weight of the world on my shoulders. Thank you all, for sharing your stories and caring, this forum helps lighten the load. It does help a bit to know there is someplace to see others dealing with the same or similar issues and to vent, if we need to and not be judged. I'm blessed to have friends that make it a point to get me out for a bit. Trying to work, clean house, make dinner and do everything that needs to be done, remember everything for him and for me, is difficult. We all seem to say the same things. Again, Thank you all for being here & sharing your stories and expertise in dealing with these difficult issues. Also, thanks to Google Calendar, with which I would forget MY/His meds and appointments! Blessings to all, you are in my prayers. On Wednesdays CST, NOON, you can call in to a prayer line (just listen or speak up with your prayer request) by dialing this # 605-4754000 I found it comforting and hope you do too.

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susan26 Mar 2013
it will pass, i know it will pass ...its just sometimes i think, how much of me will be left when it passes. thats one of the reasons i come on this forum, is because you all get it. i no longer talk to people about what its like, as they have no idea how hard it is, day in and day out!! so. because we cannot take time off, we have to plan extra hard for our time out. my time out today is going to be a couple of episodes of downton abbey while hubby is home to take care of his dad.

gsw92498 Mar 2013
Cosmic40, I know just what you mean. I am just starting to not take things personally when Mom, who is 91, has dementia and has always had a mean streak, says or does something inconsiderate or cruel. I tell myself, "I haven't done anything wrong, so she can act however she wants to". I used to argue and escalate things. I am her sole caregiver unless my husband is home. We don't get time together without her. We have no family in the area. My sister who lies 95 miles away does take her for a week every once in while which helps. I make sure I leave the house every day even if it is just to run to the store to grab milk or something. Being around other "normal" adults helps tremendously. Even if it is just making small talk with the cashier you feel a little more part of things. Being at home all the time is depressing. When you are stuck in warp mode or "Ground Hog Day" (the movie that repeats a day over and over again) it is more than a person can bear. Mom usually thinks I've been gone for hours even if it is just a half hour, but it is essential to my health to get out and about. On my way home I sometimes stop at the park on the lake for a few minutes. It is close by our home. If it is nice I walk. If it isn't I just sit there in the car and look out and realize there is a big world out there even though I don't feel like part of it. Lol. This forum helps, too, to know you are not alone, and I get on FB and connect with people in my life who are not close by. All of this helps me, and I hope this helps you. Everyone tells me, "This too shall pass", but I can't help but say "REALLY??????? Are you sure????" Have the best day you can.

susan26 Mar 2013
this is such a hard journey and i relate to how you feel: its the same day in and day out, with no let up. a good day is when we don't have the mood swings and nastiness or incontinence, a bad day is ... anything goes it seems, on a bad day.

i cope like this: i go to gym. come hell or high water, whether i feel like it or not, i go to gym. it gets me out the house for a bit, out of his energy. i no longer speak with suggestions, and could you, and will you - i give orders, matron style, as in: 'its time to make your bed now, come on, up you get' or 'no, you cannot have medicine unless i know what its for, as i am responsible for your health' or 'have your bowels worked today? drink this prune juice now please' i am kind, but ultra firm, and he does what i tell him when i use 'that voice'.

he still hides things away, is maniüulative, is mean and lies all the time, but i have switched from being really affected by it all to really just dealing with it like a nurse or caregiver.
i take st johns wort every night, and take my b and d vitamins religiously, i think they also help.

i spoke to a friend of mine, who is a caregiver for mentally disabled people, and he said that instead of hoping he doesn't lie today, EXPECT him to; that way, when it happens you are not dissapointed or saddened, because it is just what you expected. i guess its the same with dementia ... if we expect them to be mean and horrid, then it really is not so hard when the mean comment actually comes.
that has helped me detach: i expect him to behave like a 6 year old, and when he does, its ok. when he doesn't its an unexpected bonus.

easier said than done i know, but put you first. i keep thinking of what they tell us in an airplane.... if the plane loses altitude put on your oxygen mask first and then help those around you. its the same with this journey we're on: we can only help them if we're strong enough.

much love to you, xxx

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