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Between washing her and changing her and taking care of her house, we are balancing our lives between what the caregivers can do in a certain period of time and what we have to do. What's worse is that my mom is always saying how she doesn't want to live like this. She's depressed, but yet has failed on almost every antidepressant. She takes Xanax for anxiety. How do you all cope?? Thank you!

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"We're trying to keep her home.."

You are succeeding. But this comes with a large caregiving burden when someone is not independant.

Is Home still the main goal?

Ask yourself some more questions:
Why? Is Mom happier at home? Is it easier? Does it provide her better care? If so, you may wish to carry on but lighten your load as best you can. With some sort of Care Manager to arrange the staff & services.

Ask yourself & Mom, could she be ok (happy, or the same) elsewhere? Could this meet her needs & also reduce your burden load? Is that an option you want to consider?

The goal to 'Stay Home as long as possible' is a good one. Home is where we feel attached, feel most comfortable, expect to be pain free, feel loved. The 'as long as possible' part varies per family.

Timeframe is important too. Keeping someone home if terminal for a week, to pass at home, all hands on deck for an intense week is very very different to supporting someone to live at home, ongoing, for years when all ADLs require daily assistance.

What sort of timeframe do you anticipate? Would this factor change the overall care plan?
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CaringDaughter7: Seek respite even if in small segments of time. That's what got me through living with and caring for my mother out of state at her EOL since I was the one woman on duty for everything. Your mental and physical health depends on it. Perhaps your mother may require managed care facility living as you are approaching caregiver burnout if not there already.
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I just want to offer a hug, I am overwhelmed and my Mom doesn't live with me. It is hard to deal with this especially when they don't want to live anymore. My Dad was like this and he finally passed.
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CaringDaughter7 May 2023
Thank you!
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Take some of her Xanax. Hugs 🤗
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Someone mentioned that mothers will listen to sons more than daughters. I would have thought the opposite. I guess the answer is that almost everyone has someone they will listen to better than others. I know a charming, older priest who refused to take as much care of himself as he needed. Someone called the bishops office, and sure enough, there is someone he will listen to. Think if there is someone who your patient seems to respond to as a benign authority or trustworthy friend. Remember you may be her kid, she is not used to her kid telling her what she should do.
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NeedHelpWithMom Apr 2023
Definitely, not the opposite. Lots of posters refer to the golden child being the son. Often, for some unknown reasons a mother will compete with her daughter and see her son as an authority figure.

I am glad that the priest you know found a person who he feels comfortable with.

I realize that parents have a hard time listening to their children but they usually listen to their son more than their daughter. Older generations tend to be a bit sexists.
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Have you spoken to Mom's doctor about medical marijuana? We recently started my 96 year old mother on a low dose and her personality has changed completely. She has advanced dementia and cannot take care of herself, but she is happy, smiles, sings and chats with everyone. That is only half the issue however - you are burned out and you need care too. Sit down with the rest of your family and come up with a system that will work for you. Can she go into an adult day care program with planned activities? Are there funds for full time caregivers? Consider all options and pick the one that is most acceptable or least unacceptable to most of you, not just Mom.
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CaringDaughter7 May 2023
I have contemplated this...possibly CBD oil for pain and mood. Where do I even go to get this? Her doctor will think I'm crazy. I think it would help as we have exhausted everything!
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It's really funny (not ha-ha funny, odd funny) that I've simultaneously learned patience and lost patience. I am a bit more patient with the foibles of aging and far less patient with the general ridiculousness of everyday life. I work in a mental health department of an academic medical center, so I realize that medication and therapy can do wonders, but I also question if some of the clinicians are wackier than the patients. The world is one huge dichotomy and caregiving more so. Cut yourself some slack for those extra-testy days, you likely more than make up for it on the days you're giving 120%.
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NeedHelpWithMom Apr 2023
Oh, how I LOVE your honesty! Great answer.
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FYI: https://deathwithdignity.org/about/
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At EOL, they are pretty used to throwing whatever drugs at the person that they think will help. Esp if they are on Hospice or Palliative Care.

I have found that people who are now in their late 70's+ are very opposed to antidepressants b/c of the stigma of being deemed 'crazy'.

I've been on and off AD's for 25 years. And benzos, which I am tapering down, VERY slowly for my chronic anxiety. Literally took a year to cut down my dose from 4 per day to 3. IDK if my psych doc will expect me to cut down further.

My MIL will NOT take AD's, b/c she says "I am not crazy! Stop saying I'm crazy'. Well, NOBODY said she was crazy (but she is). She has Xanax and also Ativan for the horrible anxiety. She waits too long to take a dose when she's having a bad day and so they are not as effective as if she anticipates it's going to be a rough day. (ie: a dr's appt, her CG's are coming in, someone (anyone) is going to come inside her house)...DH has recently stepped up to help care for her and he will simply give her one and make her take it or within a half hour she's literally screaming at him--and that's not good for anyone.

It's easier and much less stress on everyone involved if you stick to a regimen--you don't have to take a full dose--just enough to keep an even keel. Yes, it requires thinking ahead and such--but like my MIL, who is 92...her anxiety is not suddenly going to be "OK". If she's keep a level blood level of benzos on board, she wouldn't have these horrible panic attacks all the time.

She will, however, drink a small glass of wine at night. Somehow that is OK with her. The dr told her it was for 'her blood' which makes me chuckle b/c that's what my GREAT grandfather was doing 100 years ago.
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NeedHelpWithMom Apr 2023
It is sad that there’s a stigma attached to meds.

My friend can’t let her mom read the list of side effects on her meds because she would freak out and not take it.

For some reason, some moms will listen to their sons more than they will their daughters. Old fashioned sexists thinking. The man holds all of the authority. So, I am not surprised that your MIL listens to your DH and takes her meds.
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I’m taking a course right now regarding grief and bereavement.

One of the very first points that was introduced during the first meetings was that in processing grief and bereavement, there are NO “normals or abnormals”, so not to waste time searching for them.

May not work for everyone, but it was a GREAT concept for me.
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NeedHelpWithMom Apr 2023
CBS Morning Show (Sunday Morning) had a segment on grief awhile back. They had grief counselors on. It was a very interesting conversation.

They said just what you just posted. Everyone processes grief differently. For some it lasts a lifetime and others move on with their lives.
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Same question. Only with my husband. Home caregiving for four years. I am reaching the end from my patience level. Any suggestions
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There is a real diagnosis called
" caregiver exhaustion". It sounds like you may be experiencing some of its symptoms. Seek support and input from your PCP for your own self care; learn more about
" caregiver exhaustion" ; seek emotional, spiritual support for yourself via faith based of choice, and/ or licensed SW, or community chaplain. Have your mother's PCP assess her for " level of care needs" and, begin to explore possible options for placement of your mother into an appropriate level of care facility. "ALF" , "Skilled Care",
" Memory Care", or perhaps
" independent living" senior retirement community. Her PCP should be able to refer you to a
" case manager" to look at options.

Your , the family well being is equally important as her well being. Finding a balance to it all can be challenging to put it mildly.

Seek help starting with your each PCP, and consider options.

Practice self care with simple things like exercise ( simply walk etc), get outdoor time, stay hydrated, eat nutritiously, get some social time and or alone time ( movie etc etc), practice prayer or your preferred meditation and, journal, listen to preferred music, honor other personal interests for YOURSELF ( SELVES).
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Yep! It’s normal.
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It is very normal to feel the way you do. I cared for my father when they put him on home hospice, He lasted a week, I did not sleep one minute that week 9 years ago. My mother has not been well for 9 years and my brother has been ill my whole life, I struggle every single day. Meditation helps when you have time, I try to remember this is what God would want me to do. I don't want bring in religion. Basically what your doing is the right thing to do, I try to think of caregiving as a job, It helps me cope. And lots of deep breathing. BTW my mother takes 26 pills a day, I sometimes wonder if this is really helping or hurting.
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CaregiverL Apr 2023
too many pills 💊 probably hurting
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CaringDaughter, I think you need to acknowledge that your life is as important as your mom's.

If you become ill or die, she is left without an advocate.

Fellow poster Beatty always says that caregiving only works if it works for BOTH parties.

You need to sit down and look at mom's finances and see how far her money will last if she stays at home with enough help that YOU don't end up exhausted.

If Medicaid is going to be a factor in the future, then it may be a better use of her funds to private pay a facility for some period of time before she needs financial assistance.
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Of course you are. Caregiving is exhausting. It means you need to make a change in your situation. Pain,, emotional or physical, is not there to make us miserable to to alert us to take some action.

Are you able to lighten your load, take breaks?

I am concerned that she is on Xanax regularly. It may not be helping her depression but making it worse.

"chronic use of benzodiazepines is associated with depression,  cognitive impairment and an increased incidence of developing dementia. The elderly are especially sensitive to benzodiazepines.

" https://www.pchtreatment.com/what-are-the-risks-of-taking-benzos-for-anxiety/#:~:text=These%20medications%20also%20cause%20disinhibition,increased%20incidence%20of%20developing%20dementia.
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Exhausted and getting testy and upset is the definition of burn out. It's time to reevaluate - when nothing you do works then find a different solution that would improve your life. She may not be happy with any change, but then she's not happy with her life as it is now either.
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In another post, you said your mother has 24 hr caregivers. So she lives in her own home and you live in yours? If the caregivers are paid $20/hr as you wrote in another post, that is $480/day. That's a lot of money to keep her in her own home. I hope she's using her funds. If she has 24 hr caregivers, why are you washing and changing her? What do you mean by taking care of her house? Can she hire people to do that, too?

Are you an only child? Are you her POA/HCPOA?
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CaringDaughter7 Apr 2023
Well we had 24 hr care but was draining funds! Hence why we changed to what I noted. We're trying to keep her home but I worry about the funds and burnout. I have POA, correct...also have a sibling helping. ..also exhausted!
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I get testy and upset and I have a pretty functional 92-year-old father. I've been watching over him for 5 years, pretty lightly compared to most, and I just get tired of it sometimes. There's not always something, but there are somethings, and your life revolves around them no matter how much you keep your distance.

Your life also gets in the way. I hate my job, even though it's a good job and I mostly like it. I just have a a@@hat for a boss and his boss is worse. My father freaks out if I even talk about changing my job while staying in the area. If I could travel I could get a new job almost instantly but I can't with him, or I don't see that I can.

Wish I could get my father on a med. He took Prozac for a month and it transformed him. Of course, he didn't stay on it so every so often the anxiety rears its ugly head, and he goes off the reservation.

Anyways, it's a long hard road is many cases, even with the easy ones.
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MargaretMcKen Apr 2023
If it helped, why won't he take Prozac?
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Xanax is a heavy drug - you may want to wean her off that One and switch to a low dose of Valium 5 mg . It takes awhile to cut down On the Xanax or she will have seizures . See a geriatric psychiatrist and replace the Xanax with Valium . Antidepresssants do not work with everyone either . Yes it is Normal to be worn Out .
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Clairesmum Apr 2023
Valium has a very long half life in the body - time it takes for half of the drug and its' breakdown products to leave the body - so it is not a good drug for elders. Clonazepam is a benzo that doesnt give a sense of 'high', is used for seizures, and might be better if she has to stay on a benzo. Many of the antidepressants have some relief of anxiety as well, so that is usually the first choice.
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It is normal. I recently posed on here about advocating for physician-assisted death for people who have finally had enough of growing old and sick. They know they will not get better.

I posted about death with dignity because I watched both parents die. They were in their 90s and didn't want to live any more. They cried out about wanting to die. They begged to die. But nothing could be done to help them.

I coped the way you are coping now. But I will always be an advocate for peaceful death for those like my parents and your mom. Perhaps after your experience you will be too.
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Fireworks Apr 2023
I would like to find your posts on Death with Dignity you said you posted

thank you
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Would mom rather live in AL or a SNF surrounded by peers her own age? Living with her in her home, being chief cook and bottle washer 24/7, if thats the case, is a privilege for HER and not free of charge or w/o costs to your freedom and mental health.

I think it's safe to say nobody "wants" to live with disease or dependent upon loved ones to wash their bodies, let's face it. But life on life's terms often doles out such things anyway. We either keep trying to get help or we give up. If she chooses to give up, get her on hospice and meds to keep her relaxed. Or into a SNF w hospice if qualified. Decide how long you choose to provide the in home care yourself, and how much is "too much" in terms of sacrifice.

Wishing you the best of luck with a difficult situation
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My mother is 94 and is always asking why she is not dead yet. I pointed out she opted to get a pacemaker last year so she chose to live and I get upset when I have to listen to her complaining. I would prefer that she thought of her extra time as a gift. I limit my face to face time with her to a half an hour a day during the months I’m staying with her. I just keep busy doing the task oriented things and visiting with my father who is now in a nursing home.

It’s difficult navigating this time with our parents. Be kind to yourself and try to navigate with acceptance and grace.
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I don't know that she is depressed so much as she really does NOT WANT TO LIVE anymore. My father was the same. He was not depressed. As a nurse I OFTEN heard my patients say that while they had had wonderful lives they were tired, they were afraid of the losses still to come, and ashamed of the losses they already had sustained. There is no upside coming. It is a very hard time. Try not to negate what she says. Ask her what is hardest for her right now. She may say that it is your having to care for her all the time. These are real feelings that pills cannot change. If they cannot share it with family then they have to tell perfect strangers, their nurses.

And it IS hard for you. Don't deny yourself the truth of that. I could never do 24/7 care in the home. It is terribly hard.

Not everything can be fixed. The torment of aging and loss is so very difficult. It can only be endured. Sharing her truth with you helps her. Your acknowledging that this is hard helps her.

I am so very sorry for the suffering of you both. Allow the grief. And in it I hope there are moments you can remember the love and the joy.
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shareandcare Apr 2023
This is very meaningful advice and thank you for your honesty. There is no way to get around aging and its difficulties. Acceptance will bring some peace.
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