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@joegarrison wrote:

I saw in a post that to reduce the caregivers stress, they should "expand the circle of caregivers" by talking to siblings or relatives.   My family is all in Pennsylvania and we live in Austin, Texas. Does anyone have other ideas?

Darrell


Well i'm guilty as charged: that was my idea. But, to defend the idea, what if... siblings or relatives contribute money into a fund that pays for home health aides? What if they fly in from wherever they are, taking turns, for a week to chip in and give you, Joe, a break? What if you fly or bus or drive or train your loved one to them for a month, now and again?

Distance is no excuse....

What do you think?

"Spread the burden" is also an idea of mine, but not just mine...

Jane

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Message 2 of 10

Hey Carolina! Sorry it's taken me so long to respond again. I had to bust my buns to then get ready to fly across this very LARGE country to get to see east coast family for the holidays. I take it you live in one of the Carolinas. Rural Oregon was such a shock compared to urban DC. Anyway, the holidays are almost over. 

Hooray for Janes! 

Sounds like you are practicing excellent self-care by keeping your distance from your bully-brother. Sometimes ya just gotta. It's the last choice and sometimes a solid, justifiable one. I say, his loss! And your gain: peace of mind. 

You are a generous-hearted person: realistic, and not looking for some big payback for your good deed of caregiving. Glad to 'know you' however superficially.

And i love coloring. LOVE IT. Who knew that it is so satisfying to color inside the lines? I also do my knitting and crocheting fairly constantly, and i'm planning a rather large outdoor mobile! Creativity is a healing, joy-filled expression of grace, IMHO.

Anyhoo, i hope your holiday has had some moments of grace and peace. And that you got to bake something that YOU especially enjoy eating and sharing.

Here's to 2019 full of humor and wisdom. Thanks for writing, and let's keep it up!

Jane

 

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Message 3 of 10

I saw in a post that to reduce the caregivers stress, they should "expand the circle of caregivers" by talking to siblings or relatives.   My family is all in Pennsylvania and we live in Austin, Texas. Does anyone have other ideas?

Darrell

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Message 4 of 10

Thanks for writing Jane. I had a cousin named Jane who was such a help to me and gave me goof advice and practical help, and she lived 200 miles away! More help than my local family. I sent an email asking my mom's doctor to send a PT to help us learn how to get her up without damaging ourselves in the process. My dad just huff and puffs after trying to get her up. My cousin called the rescue squad for her husband whenever he fell, but they were just 2 miles away, so that might have had something to do with it. I have a belt that is supposed to help you to lift a person, but it rides up to her upper ribs, so it's not much help.

I have a very troubled history with my sibling which included bullying. He has always been very jealous of me, so these issues have a long history - my dad just says he is lazy, and he may be right. It's tough to write someone out of your life, but for my own wellbeing I may have to.

My dad was a deacon for about 50 years at a local church - and they have never offered to do anything ( and apparently other church members who were caregivers did not get help from them as well)

I thought about trying to get my mom on Medicaid, but I don't know if there have been budget cuts to programs or not?  I seem to remember seeing an article that said the person would have to be completely homebound  ( not even going out to doctor's office) in order to get help, so that might be a problem.

I do love coloring books, ( local library has coloring day once a month) and I read ( even though I often get interrupted) and I do arts and crafts. Need to get more exercise, but it's hard when you are so tired.

My family has been used to me doing lots of baking at Christmas, and decorating. Things are going to be a bit different! I can't do it with all the other responsibilities. I just know that life is passing me by and that's hard to deal with. I'm single, and one guy I was interested in said -sarcastically- 'well you know your parents MUST come FIRST.' If I honestly ask myself if the tables were turned, would they have looked after me - I know that they would have put ME in a nursing home after a while.I feel like my family really does not care what happens to me as far as my health.

I do appreciate your writing, and don't want to sound too dismal -

Hope you have a great Christmas and New Years.

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Message 5 of 10

Hi Carolina, thanks for writing some more. It SOUNDS really hard. Families can be so full of misunderstanding, hurt feelings, and as you put it, "ire". Caregiving is inconvenient!  I don't see how one family member can just 'opt out'. But it sounds like he has strong opinions, and with you having the power of attorney for health care decisions, he wants to more opinionated than he is helpful. Sigh. 

DId you know that if she falls, you can call the fire department and say it is an emergency but what you need is help getting her up, and they'll come? That worked in Maryland where i used to live. It works out here in rural Oregon, too, where i live now, because everyone knows everyone else and the EMTs are all volunteers. I'd hate for you to hurt yourself. PT is a wonderful idea.

What else have you tried? Sometimes churches are super helpful and sometimes, not at all. I once helped to organize a circle of caregiving for a new mother who had a severe stroke one week post partum. She already lived with her mother, who all of a sudden had a newborn grandson and a disabled daughter. Between our church and her work place, we had errands, transportation to doctors, diapers,  baby sitting, and all kinds of other assistance arranged. It was about a year before the help could power down. 

How do you take care of yourself in the midst of this?

My go to relaxation method lately has been coloring in coloring books of mandalas. i now have an embarassing number of gel pens, ultra fine point magic markers, and other fancy colored pens, and a growing pile of finished colored pages. i had wondered what the appeal was, and now i'm hooked.

keep writing if you like. it's busy holiday season for some of us, and not really any different season for others. 

You are a trooper. And why are so many of our metaphors related to war? because it sometimes feels like a battle?

Jane

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Hi, thanks for writing. We tried my mom on Aricept for a while, seemed to make her have mood swings. One of her doctors tried Seroquel, but the problem we have is that when she takes anything that makes her more sleepy, it just ups her chance of falling. She naps in her chair all during the day already. She almost fell again this morning - she shakes and her family doctor wants to send her to a neurologist that she had seen before - before, he just wanted her back on Neurontin again, which she took for several years ( and may have contributed to dementia, one other doctor thought) I don't want to get back on the merry go round of doctors again, so this may be a one visit thing. I was able to get her down to the floor and then had to try and get her up into a chair - I put ice pack on my back ( I know the drill by now!) I have sent email to her doctor to send a physical therapist here to show us how to deal with her about getting her into chair, falling, etc.

 

Yes, I had told my parents a few years ago that I demanded help from my older sibling. Well that worked for about two years for appointments mainly, then he had a blow up about me being power of attorney  ( added years ago) and some good decisions that he did not agree with  - and he didn't want to do things on regular basis, didn't like staying over night, etc. I have had to deal with law enforcement, social workers, etc because of his ire. They all said it was ridiculous, but this is my situation. I am getting some respite help now and then, there is no help from their church  ( they haven't helped other members either) so I am having to get things done by myself - and my family does not care about my health. It has been really hard.

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Message 7 of 10

Hi Carolina,

Astraea's advice is always spot on, I have a couple of thoughts inspired by what you wrote. First up, have you talked about your mother's behavior with her doctor? I don't know if she sees a family nurse practitioner, an internist, a geriatric psychiatrist or a neurologist, but someone in that line up should be able to prescribe something that will help her be calmer. And perhaps a little less delusional about people who are not visiting just because she knew them 20 years ago. Something that our medical director used to prescribe to hospice patients was haloperidol (I was a hospice social worker at one time.)  Agitation is a problem for people with dementia, and also for their caregivers, and there are medications that can be tried. It's worth asking about. 

 

I was once a geriatric care manager, and there was a very paranoid client i tried to help. It took some weeks to gain her trust: i had to sit on the porch and talk through her door before she finally would open the door. She lived alone and was healthy physically, but her dementia was well advanced. She was willing to go see a psychiatrist, whom i referred to as a 'stress doctor' -- his purpose was to reduce her stress. He prescribed haldol, or haloperidol, as a 'stress reducing pill.'  I was amazed: it helped a lot, and she admitted that she felt 'less stress.'  I became a firm believer. And it's been around forever. It is not a benzodiazipine, like Valium, which is not recommended for anyone more than as a short term solution, and especially not for older people, who metabolize medications more slowly. Anyway, make an appointment, fax something to her or him the day before and mention her behavior. See what happens.

 

The other thought is, why are you the designated martyr, i mean, designated  caregiver? Is it because you don't have kids (at home), and/or you're single? If there's one theme to my advice to caregivers, it's "enlarge the caregiving circle"!  There's all kinds of ways in which siblings or cousins or church members, et al, can help out, pitch in, volunteer, mow the yard, donate some money to hire an aide, even if it's just once a week...  

 

The other thing is for you to take care of yourself. It sounds like you're suffering from stress, in body and mind. Finding some solution to your parents' behavior with a doctor's help might reduce your stress. Getting breaks might also. You chose this role, but it is worth trying to find a way to survive it.

 

If he gets back into spitting into the sink you could have a bottle of bleach & water nearby and squirt the sink heartily. I hope he's really stopped.

 

Another way to reduce stress is to write us, and you did that. There's a wise community of folks here. Please keep writing, and good luck with them both.

Jane

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Well the behaviors were actually going on before the dementia. My mother has always been high maintenance ( and I was designated the fixer) and my dad's behavior is passive aggressive - it's like a control thing. I am happy to report that it appears that he has stopped the spitting, at least for now. I told him his mom would not have put up with it - very true, too. My problem is the same I have heard from other caregivers - that I am treated like a servant or employee. I have no problem doing typical housework, but when it comes to throwing things down on the floor expecting someone else to pick it up, or throwing clothes in the trashcan, because it's closer, that's a bit much to take.

I am also having problems with my mother arguing - that someone is coming to the house ( someone she hasn't seen in twenty years or so) and she just keeps going over and over this - If I go along with her she will sit up until 12 midnight still waiting on them to show, and if I tell her that no one is coming, ten minutes later she will start all over again. Usually she cannot tell me who the person is ' oh that man that came...."

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@carolinaliving - Welcome to Online Community; I'm sorry for the situation in which you find yourself! I've been a family caregiver multiple times. With dementia:

 

Rule #1 is to not expect the person to behave normally, or the way they did in their prime.

Rule #2 is to not project (or allow others to) negative/abnormal behavior as the person being deliberately uncooperative, unappreciative, or "bad" (like a child), if they weren't like that before they developed dementia.

Rule #3 is that if the person has better times of day than others, for rational communication, make sure that's when you talk to them about things you'd like them to do differently "to help you". If the person has reached a stage of not being able to process communications rationally, then you have to adjust your approach about changing their behavior .. if that's even possible. It's NOT like being firm with a child; you can't "demand" or "put your foot down", because they just aren't able to process that.

 

My aunt lived with me the last 2-1/2 years of her life, until she broke a hip, and needed to be in a nursing home. Towards the end at home when she was 90+, she had short periods of not being quite rational. For example, once she woke up in the middle of the night, and began bathing & getting dressed for the day .. insisting that it WAS daytime, and that there was a conspiracy to make it look dark outside, to keep her in bed! She got very angry with me about it. The next morning - when she was at her best - I asked if she remembered what had happened overnight. She remembered, but couldn't imagine why she'd thought it was daytime, or why she was so angry about going back to bed .. and VERY apologetic. How can you be angry at someone who realizes they're losing control over their own mind, and doesn't know how to "fix it"?! Something to remember when you're really frustrated!


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Hi I am new to the forum and am looking after both parents with dementia. I am not married and currently dealing with multiple health problems, and doctor says that some are directly due to extreme stress. I am dealing with one parent who sees things and has gotten to where most conversation  really does not make much sense. The other parent is better off physically and mentally, but cannot remember and is addicted to a substance. They have been looked after extremely well, and I cook, clean, do errands, shopping, yard work etc. In other words I am exhausted most of the time!

The current problem is with the parent who has the milder dementia. I have few rules here, but one rule is that I do not want spitting in the kitchen sink. It is gross and nasty and very unsanitary. I have provided a cup for my parent to spit in, but they refuse to use it. In other words, they are walking over to the sink rather than use the cup right beside their chair. I am currently dealing with a cold and have no desire to catch germs from this disgusting habit. Other people in my family have said that my parents do not seem to appreciate how lucky they are to be living in a beautiful home with all their needs cared for. I feel that I have the right to put my foot down about a few things that would cause me unnecessary work - would like to know how I can deal with this. I feel that I am not getting any respect at all. Thanks

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