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Caring for a parent with dementia

My mother is 89yo and has Dementia. She knows who I am & the people she sees on a regular basis, but other then that she has pretty much lost her short term memory. She feels stupid, she knows her mind isn't working the way it used to and she hates that and so do I. I would love to have a conversation with my mom, but that is not possible, except on rare occasions. I help her pick out her clothes, make her meals, do her meds, make & take her to appointments. Why? Because she is my mom & I love her.
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Caring for a parent with dementia is never ever easy, but you're doing invaluable work! Keep it up Heart

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My mom is 81 years old and has dementia.   My sister and I take turns caring for her in her home, because she does not want to live with either of us...my sister and I have husbands who are 'somewhat' understanding about our time away from our homes...my sister's husband is not well and we're both pretty weighed down with our own personal issues...my mom is still pretty mobile, she's very mistrustful and will not give either of us power of Atty so our hands are tied except making sure mom's bills get paid..mom also drives our friends away when they come by to visit us  at mom's...says mean things to them...I feel isolated enough even though I know others are going through similar issues with parents and dementia...I've tried counseling but honestly I get tired of hearing myself talk about it...pretty burned out

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@chausey wrote:

My mom is 81 years old and has dementia.   My sister and I take turns caring for her in her home, because she does not want to live with either of us...my sister and I have husbands who are 'somewhat' understanding about our time away from our homes...my sister's husband is not well and we're both pretty weighed down with our own personal issues...my mom is still pretty mobile, she's very mistrustful and will not give either of us power of Atty so our hands are tied except making sure mom's bills get paid..mom also drives our friends away when they come by to visit us  at mom's...says mean things to them...I feel isolated enough even though I know others are going through similar issues with parents and dementia...I've tried counseling but honestly I get tired of hearing myself talk about it...pretty burned out


Dear Ms Hausey, 

Have you the means to consult with a geriatric care manager? I used to be one, and many of our 'cases' were just as you describe. I would be hired to befriend a paranoid client. Sometimes i'd talk to them through there front door for a number of visits before they'd let me in. First i'd meet with the adult child(ren), get the lay of the land, then meet the person with dementia. I was hired once because a very cranky woman kept getting evicted from assisted living! Once i figured out what her triggers were, i found her a placement and put up a big sign "DO NOT TOUCH HER WITHOUT HER PERMISSION"  and she stopped hitting people. Oy.  You can find care managers on this web site: https://www.aginglifecare.org/.   

You can negotiate how much you need to spend and keep it minimal. 

 

First thing, though, is to check out who your area agency on aging is, by looking up her zip code at www.eldercare.gov. That is your tax supported help for all things 60+. Check them out.

 

I'm glad you've had some counseling. Keep writing here. We have an enormous amount of collective wisdom. I've been a caregiver for both my parents and a grandparent, and my partner has MS. We're all in this together.

 

Jane

Contributor

Both of you just confirmed what I was feeling. My Mom is 85 years old. Her short term memory is basically gone. She does know me and my daughters and grandchildren. She is so sad about not remembering current events. She is the child now. And I'm the adult. No siblings. Just my Mom and me.
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@Fefewhitt wrote:
Both of you just confirmed what I was feeling. My Mom is 85 years old. Her short term memory is basically gone. She does know me and my daughters and grandchildren. She is so sad about not remembering current events. She is the child now. And I'm the adult. No siblings. Just my Mom and me.

Hi Fefe!

 

I'm so glad she still knows you and your children and their children. And that she recalls her own past. The task of life review can be very meaningful for you both. Perhaps that's a place you both can 'go', together. You can become the next generation of history, a repository of stories of your ancestors, through your mother's remembrance. How cool is that. Very cool.

 

Current events are rather depressing lately anyway, am i right? Sheesh.

 

What do you two do that you both enjoy?

 

So glad you've written and joined in.

Jane

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I am new to this site and reading your post brought me to a sense of community already. My mom is 87 and I'm an only also, 2 hours away from her. She is exhibiting symptoms of Sundowners and if she calls between 7-8:00 pm, I know it is her in a very confused state. She is very headstrong otherwise and refuses to address future needs. 

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@jw4905262 wrote:

I am new to this site and reading your post brought me to a sense of community already. My mom is 87 and I'm an only also, 2 hours away from her. She is exhibiting symptoms of Sundowners and if she calls between 7-8:00 pm, I know it is her in a very confused state. She is very headstrong otherwise and refuses to address future needs. 


Ah yes, sundowning. There's a blurring between day and night, and between waking and sleeping, that happens in much older people. Night is scary in some basic way that we all know from our earliest memories. I'm glad she calls you when she's confused. That is a very healthy thing for her to do: call someone who can ground her in reality!

 

A dear friend of mine's mom had dementia, and when the sun went down she started obsessing about 'the children', as in, 'where are the children? who's minding them? where are they?'  Never mind that they were all grown and in their 50s. She would be inconsolable until she would hear her sister's voice on the phone. My friend would call her aunt and put her mom on the phone. "They're just fine, Harold took them out for ice cream, everything's allright...."  Calming magic. Everything BECAME alright. Phew.

 

Does she have a life alert button? Is she wandering at all, getting lost coming back from previously familiar places? 2 hours is kind of far... Does she have concerned neighbors?  Not trying to raise your anxiety here, but... if she's stubbornly refusing to think about the future, you might be forced to....

 

we can help here. we've been through it or are dealing right now.

thanks for joining our chorus of coping...

 

jane

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Thank you for such a wonderful reply. I also like the suggestion of getting more light into the house in the evening. Fortunately, she doesn't wander, but becomes very anxious about where I am and when people are coming to get her (lunch dates, family). She may call several times an evening, very confused. I need to stop engaging her and simply give her the answer to her questions I know the tough conversation has to take place, but I hope that we can make it to the neurologist appt. at the end of July. 

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I think your mother's neurologist may be able to give her some medication to decrease her anxiety late in the day. This will ease her mind and relieve your worries. You can always call the neurologist's office to ask for an earlier appointment if things are getting worse. Good luck!--Barry Jacobs

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Hi everyone. I'm Barry Jacobs, a psychologist on the AARP Caregiving Advisory Panel. Sundowning is indeed a common problem with loved ones with dementia. No one knows exactly why it occurs but an old reliable method for dealing with it is to increase the level of illumination in the room as the afternoon wanes. The theory is that this helps the person with dementia better orient themselves. In my experience, this method is at least somewhat helpful. However, if your mom is still markedly confused, she just may need a greater degree of supervision in the evening--more cue-ing, direction, and hands-on help.

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If your Mom was not a veteran, was your Dad? If your Dad was a veteran and your Mom's assets are $80,000 or less, she may be eligible to receive funds to help I paying for a caregiver. Check with your local Veteran's organization. I'll be looking further into this soon for my Mom.

Mary
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Hello, everyone!

I have a slightly different problem than the previous stories. My mom is 94, has dementia, and a severe anxiety/depression/panic attack kind of thing going. She only feels safe with me being at home with her. All the time. Literally. 

My daughter died almost 5 years ago, so I am raising her now 10 year old son. He has adhd and is dyslexic, so he needs me to be there for him, too. 

I have one older sibling that lives close by,  but she and my mom have "issues" (well, she and I do, too). So she doesn't come around much. I understand, but I am battling the feeling of resentment that she cannot just work through her own problems with our mom and just help. 

I feel stuck; my mom has a hard time waiting for me to get home with my grandson when I pick him up at school. She says that when she is in full panic mode,she feels as if someone might crawl in her window and kill her. I feel so bad for her! She cannot control these feelings of fear. Her geriatric psychiatrist has taken her off of her Atavan and similar meds for fear of increasing her fall risk. So she takes gabapentim, which helps a little. 

I would love to take my grandson places again. To the movies, bike riding, ice cream after school. I would also like a life of my own. But I love my mom so much; she raised me with love. I feel that I have to return the favor. 

I have (thankfully) started back into therapy. 

Thank you all so much for reading this.

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@sw74357207 wrote:

Hello, everyone!

I have a slightly different problem than the previous stories. My mom is 94, has dementia, and a severe anxiety/depression/panic attack kind of thing going. She only feels safe with me being at home with her. All the time. Literally. 

My daughter died almost 5 years ago, so I am raising her now 10 year old son. He has adhd and is dyslexic, so he needs me to be there for him, too. 

I have one older sibling that lives close by,  but she and my mom have "issues" (well, she and I do, too). So she doesn't come around much. I understand, but I am battling the feeling of resentment that she cannot just work through her own problems with our mom and just help. 

I feel stuck; my mom has a hard time waiting for me to get home with my grandson when I pick him up at school. She says that when she is in full panic mode,she feels as if someone might crawl in her window and kill her. I feel so bad for her! She cannot control these feelings of fear. Her geriatric psychiatrist has taken her off of her Atavan and similar meds for fear of increasing her fall risk. So she takes gabapentim, which helps a little. 

I would love to take my grandson places again. To the movies, bike riding, ice cream after school. I would also like a life of my own. But I love my mom so much; she raised me with love. I feel that I have to return the favor. 

I have (thankfully) started back into therapy. 

Thank you all so much for reading this.


Hey sw,

Goodness, that's a tough situation. So you're retired? Living on social security and savings? And you have your mother's income, however modest. And a very active 10 year old boy. You have a lot going on!

 

Has her geriatric psychiatrist tried haloperidol? Or Seroquel? Or Respirdal? There are other medications for anxiety, panic, paranoia.  I sure as heck am not a psychiatrist but as a medical social worker, i've learned that there are many options for treating her kinds of distress. And i don't mean to second guess you or the psychiatrist. Just hoping there are things that haven't been tried that will help.

 

I'm also thinking, yeah i agree, your sibling needs to pitch in. Can you go see her and talk about your need for help? everyone has issues with parents and kids. still, family helps family. 

 

does your mother trust ANYONE else? A pastor or priest? An old friend or former coworker? She needs to expand her repertoire, expand the caregiving circle. 

 

Have you tried the local mental health association? there are other families struggling with similar situations. And you are the very definition of 'sandwich generation', having to parent your grandson.

 

i'm so sorry about your loss of his mother. that pain must still be present.

 

what helps you keep going?

 

jane

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I've been reading some of the posts here and have added a book title or two to my list of anticipated reading.

 

I don't think I've seen anyone admit to this problem.  I do so with fear and trepidation but...my biggest challenge in providing extra support to my 82 year old mother with dementia is not with her behavior or personality.  

 

She has to be one of the easiest people to be around--especially for anyone but a daughter.  The painful thing is the history of our relationship doesn't include feelings of love toward her on my part.  I have no doubt that love is buried under a whole lot of junk, but because I don't have access to those feelings, I struggle to treat her as she deserves to be treated.

 

I have a fair amount of knowledge re. dementia and I've applied it when working in nursing homes with other people's mothers and fathers but what I know to say and do and what actually happens are not in sync. here in the home we share.  I'm meditating, listening to online encouragement, and have begun seeing a therapist--again.  Decades of family dynamics aren't going to change quickly, but I'm feeling pretty desperate for a change to come soon.  My insides don't feel good at all!  I don't want the stress that's my near constant companion to make me sick, nor do I want it to affect my ability to be loving and kind.

 

Any resources anyone knows of to add support?

 

Thanks,

Marilyn

Bronze Conversationalist

@mjhaverly wrote:

I've been reading some of the posts here and have added a book title or two to my list of anticipated reading.

 

I don't think I've seen anyone admit to this problem.  I do so with fear and trepidation but...my biggest challenge in providing extra support to my 82 year old mother with dementia is not with her behavior or personality.  

 

She has to be one of the easiest people to be around--especially for anyone but a daughter.  The painful thing is the history of our relationship doesn't include feelings of love toward her on my part.  I have no doubt that love is buried under a whole lot of junk, but because I don't have access to those feelings, I struggle to treat her as she deserves to be treated.

 

I have a fair amount of knowledge re. dementia and I've applied it when working in nursing homes with other people's mothers and fathers but what I know to say and do and what actually happens are not in sync. here in the home we share.  I'm meditating, listening to online encouragement, and have begun seeing a therapist--again.  Decades of family dynamics aren't going to change quickly, but I'm feeling pretty desperate for a change to come soon.  My insides don't feel good at all!  I don't want the stress that's my near constant companion to make me sick, nor do I want it to affect my ability to be loving and kind.

 

Any resources anyone knows of to add support?

 

Thanks,

Marilyn


I gave you a Kudos because of your candor. 

 

Here's a link to an article about caregiving for someone you dislike: http://www.aplaceformom.com/blog/10-13-14-caring-for-family-you-dislike/

 

It's amazing how people closest to you can hurt you over and over again. 

 

I think the best thing you're doing is seeing a therapist. Awesome gift to yourself. Keep going. It's worth every penny

 

My mother was very difficult, and i saw a therapist AND went to Alanon to try to stay in there with her AND keep my sanity/ detach from her corrosive hurtfulness.  She passed away 24 years ago. We did the best we could, and I have no regrets.

 

Thank you for posting. Keep writing. 

 

Jane

Periodic Contributor

It is comforting to see the responses of all the people that are also dealing with &/or living with a loved one with dementia. It really helps to know you are not alone.  It has been extremely rough recently, mom has had back to back UTI's and she has been so confused and out of it.  I know that is how she shows symptoms of UTI now, because she has them often.  I had to reduce the caregivers to 3 days a week, the days I work, so I'm back to pretty much full time duty when I'm not at work.  I feel like she is getting to a point where she needs more care then I can give her and I am having a really hard time figuring out what to do.  I have no siblings, so the decision is mine and I am struggling with making one.  Anyway, I just needed to get that off my chest, thanks for letting me vent.... 

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@nmclane wrote:

It is comforting to see the responses of all the people that are also dealing with &/or living with a loved one with dementia. It really helps to know you are not alone.  It has been extremely rough recently, mom has had back to back UTI's and she has been so confused and out of it.  I know that is how she shows symptoms of UTI now, because she has them often.  I had to reduce the caregivers to 3 days a week, the days I work, so I'm back to pretty much full time duty when I'm not at work.  I feel like she is getting to a point where she needs more care then I can give her and I am having a really hard time figuring out what to do.  I have no siblings, so the decision is mine and I am struggling with making one.  Anyway, I just needed to get that off my chest, thanks for letting me vent.... 


Vent away!

 

Have you talked to an eldercare social worker? You have free access to one when you look up the 'area agency on aging' that serves the are you live in. Www.eldercare.gov and put in your zip code. Bingo, free advice. You might find out that she's eligible for respite care through the county. Is she a Veteran? There's a lot of programs for caregivers of veterans. Is there an alzheimer's association local chapter near you? Does she have any old friends who could visit one night once a month to give you a break? 4 friends and you'd have one night off a week!!

 

Just brainstorming here. What do you think would help?

 

Jane

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Have not looked into that, but will. Thanks so much for your help, it is appreciated.
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@nmclane wrote:
Have not looked into that, but will. Thanks so much for your help, it is appreciated.

Keep sharing! We learn from each other!

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I have both my parents living with my husband and me. Mom is 79 and lost her hearing and Dad is 87 with Dementia. I do speak to him about when he was a kid. Surprisingly he remembers things and even tells me stories of his youth I think he would probably keep to himself if I had asked 10 years ago.
Newbie

Hi, my mother is 83 years old and going through the same thing.  She was moved to an independent living apartment in March because she was starting to go out walking to places in the dead of winter to WalMart or McDonalds.  She knew where she was going.  She was lonely and wanted to get to talk to people.  My friends at church found her walking in the middle of the road of a busy avenue, thumbing a ride.  Her short term memory is failing badly, and she thinks people are coming into her apt. and stealing things, like coffee, raisin bread, her Hummels, her sweaters.  She has a constant tape running in her head that people are stealing from her.  It's heart breaking.  We actually got into a heating argument at the grocery store yesterday because I wanted ti buy her 6 rolls of toilet paper. not just one.  she thinks people will come in and steal the other rolls.  Yesterday she went to the Senior center for lunch for her day out and she brought two bags of Hummrls with hrt, a bag of xlothes and a bag with knitting instant coffee and cat food.  I feel so bad for.  I don't know how to soothe her worries.....

Newbie

Hello, I care for my 87year old mom. She is constantly packing and hiding everything. She thinks people are stealing from her all the time. So exhausting for both of us. I feel so bad for her. She is feeling so confused and frustrated. She has dementia with lewy body. Have been working with great doctors and have started her on a med that will help calm her down at night . Just wanted to vent. Thanks for all the useful information everyone!!!!! Nice to know I'm not alone. Such a sad disheartening disease.
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@da2027 wrote:
Hello, I care for my 87year old mom. She is constantly packing and hiding everything. She thinks people are stealing from her all the time. So exhausting for both of us. I feel so bad for her. She is feeling so confused and frustrated. She has dementia with lewy body. Have been working with great doctors and have started her on a med that will help calm her down at night . Just wanted to vent. Thanks for all the useful information everyone!!!!! Nice to know I'm not alone. Such a sad disheartening disease.

Is haloperidol one of the drugs her doctors have prescribed? that drug will help with paranoia.

 

jane

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@sp172 wrote:

Hi, my mother is 83 years old and going through the same thing.  She was moved to an independent living apartment in March because she was starting to go out walking to places in the dead of winter to WalMart or McDonalds.  She knew where she was going.  She was lonely and wanted to get to talk to people.  My friends at church found her walking in the middle of the road of a busy avenue, thumbing a ride.  Her short term memory is failing badly, and she thinks people are coming into her apt. and stealing things, like coffee, raisin bread, her Hummels, her sweaters.  She has a constant tape running in her head that people are stealing from her.  It's heart breaking.  We actually got into a heating argument at the grocery store yesterday because I wanted ti buy her 6 rolls of toilet paper. not just one.  she thinks people will come in and steal the other rolls.  Yesterday she went to the Senior center for lunch for her day out and she brought two bags of Hummrls with hrt, a bag of xlothes and a bag with knitting instant coffee and cat food.  I feel so bad for.  I don't know how to soothe her worries.....


Paranoia is a symptom of her dementia and although you can't get rid of it, there are medications that can lessen it's grip on your mother. Seems to me that people who lived through Great Depression are particularly concerned that someone is stealing from them. Have you talked to her doctor about these behaviors? I used to be a geriatric care manager (now i work for home hospice). I've seen patients do better on haloperidol, zyprexa, seroquel. Don't give up on her, and try not to take it personally. This is so hard. She is lucky to have you as a daughter.

 

tell us more?

 

Jane

Contributor

I to care for my Mother who suffers Dementia, she is 75 years old. and the dementia has progressed rather quickly. You are fortunate that your Mom remembers who you are, unfortunately my Mom doesnt' remember me or anyone in our family it is heart breaking.(she says that I am the nice Nurse the Doctor sent to care for her.) I Think my mother had dementia longer than what we thought. she showed signs from 2007, I am heartbroken becauser my mom doesn't remember me, I am greatful for the opportunity to care and love my mom, she loved me unconditionally.Thank you for sharing

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Hello!  I have read most of your posts concerning loved ones with Dementia.  You have all helped me realize I am not alone.  It breaks my heart to see that my 92 yo Mum is losing her short term memory.  She still has many stories to tell about when she was younger and I love to hear them.  Patience is SO needed because she repeats them over and over again.  It's funny though (of course I do not laugh at her) but when I gently mention that I remember this story, she continues anyway.  Unfortunately, Mum lives 350 miles away and we do not get to see her as often as I would like.  Thank goodness for the telephone.  I will be driving to her assisted living location a few days before Christmas and bring her back to spend the Holidays with us.  We are SO looking forward to her visit.  Of course, she is as well.  Thank you for listening.

 

Bev.

Contributor

My Mom is 96 and has moderate dementia, also.  I retired and have been home with her for 6 years.  I appreciate having the chance to share with someone else going through this!  I am an only child;  we have lots of relatives and friends who offer to stay with Mom when I need someone.  However, every time I have asked for someone to come, there's always an excuse.  So, I have stopped asking.  And, I have stopped doing most of the things I love to do --- long walks, golfing, church, travel.  But, she's my Mom and there will be a time in the future when I'll be able to do these things again.  But, she'll be gone, unfortunately.  When I really need to be away, we have a wonderful nearby assisted living that will take her for a day, a week, or whatever.  Mom repeats and repeats.  But, she speaks well at this point, which is lucky for me.

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Dear nmclane,

 

You've gotten some great advice and stories. I hope this helps you feel less alone. Have you ever read the "36 hour day"? It's a classic book about how one day being with a person with dementia feels like it has 36 hours instead of 24. LOTS and LOTS of tips, and wisdom. You will be able to relate immediately!

 

To find out if you can be paid as her caregiver, go to www.eldercare.gov and put in her zip code. You will be led to a web site and phone numbers of the particular agency in your area that helps people over 60, and their caregivers, get help. It's a free service. Call them, and if you can and have time, ask for either a home visit from a social worker, or go into the office to speak with someone at length. They are experts on "aging in place", dementia care, services like meals on wheels, transportation  help for seniors, adult day care, you name it. Guardianship issues if you need to manage her money and she's no longer legally competent to give you permission.  

 

Some states allow you to be paid as a caregiver. I'm not sure if Michigan is one of them. I believe that she has to be poor enough to receive Medicaid, in addition to Medicare. The Agency on Aging that you find on eldercare.gov will tell you how to apply if she doesn't have it. 

 

Best of luck, and tell us how it's going!

 

Jane

Periodic Contributor

I appreciate everything everyone has said, it is so helpful to know that I am not alone because it does feel that way some days.  I have not read the book "36 hours" but I am going to get ia copy as it sounds like a good read for me.  We've had a rough month but we're doing ok. Have a blessed holiday.