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I've been caring for my 84 yr old father with Dementia, and my 75 yr old mother with several serious health issues for 2 1/2 yrs now. My life literally STOPPED 2 & 1/2 years ago. Each individual case is different, and when you have absolutely no help like in my case, things get so much worse. I have two sisters, but am the absolute caregiver for my parents, as they no longer have money in the bank.
This sounds good, but I have three brothers who told me that I am the daughter of our mother and I am the one who should take care of her. And my friends are few because I was disfellowshipped from my church of forty years because of a disagreement with the leadership.
Martha 617, with all that's going on with your mother, I find it very hard to believe how she is on her own until you show up. It sounds to me as though your mom needs your presence, or somebody's presence, 24/7.
I was skeptical of the title. But, wow! This should be mandatory reading for new caregivers of people with dementia.
I am still skeptical of the 37% slower progression claim. I'd like to see the study itself. But even if the sample was was small and the results less than reliable, it compares favorably with any drug on the market.
True, not every problem can be solved. But taking a problem-solving approach matters. Learning about the disease matters. Getting support matters. (I can't imagine what I'd done if I hadn't had a good caregivers' support group to attend.)
And it is often VERY difficult to get the personal time one needs. But believing we are entitled to it and are worthy of it is an important step in the right direction.
This article describes a very high-level general approach. It does not claim yoga will keep you sane, or eating certain foods will calm you, or your loved one will benefit if you lose weight. It is about a frame of mind and attitude rather than specific activities. I would add, along with Kitty, to learn not to take the situation personally as a critical part of the overall strategy. That is part of the solution rather than emotion approach that is worthy of being called out separately.
Martha627, Your mother sounds like an absolute sweetheart, compared to my Dad; and light-years more malleable. From your description of her interactions with you, it's hard to find any point of comparison. Just picture if all those things you did failed, and you'll have my life. Beyond that it would take several books to adequately explain what it like here.
Diana68...there are free services available for help...you just have to search them out. One example would be your church. *We have a program at our church called-Interfaith Caregivers-these are parishioners that volunteer their time to help other parishioners with things like...transportation to the doctor...the grocery store...or bringing meals to shut ins. My husband volunteered when the economy was down and it was rewarding for him and for the people he helped. *There is also a senior center in my Mom's city that is supported through the United Way. They have a driver that comes in the morning and picks up the elderly throughout the city. My mother has Alzheimer's dementia and so I go to her house every morning and get her ready for the bus. She grumbles sometimes...but she goes. It's good for her to get out. She's gone from 9 am to 1 pm. *You can also check the local schools...high school and colleges...place an ad on their bulletin board. There may be a student in need of this experience to use for a paper...a class...a badge...or a resume. Always be sure to consult with their teacher or professor so you both understand the ground rules and you have an idea of the person coming to your home. *Check with the Alzheimer's and dementia support groups in your area or call the 1-800 number...maybe there are other people in your situation that can give you additional resources...as well as them.
GayleV...you sound very angry. I can tell you from experience that the suggestions in this article are very good ones and that it is ultimately our responsibility as the caregivers to be creative in finding solutions. Dementia is a chess game...the moves are endless...we as caregivers have to counter those moves. I've found that being proactive and organized in my Mom's care has worked out the best. Also...going with the flow. I can't change what is in my Mom's head or take away the voices...the hallucinations...or the behaviors. But I can make the situations as pleasant as I can for us both. And so far...it just keeps getting easier to do this. Having a routine helps...and since implementing my routine...my Mom has begun to expect certain things to happen at a certain time. I arrive at her home the same time every morning...give or take 10 minutes...I allow her to chose things like what she wants to wear...when she doesn't want to take a shower...I don't fight with her. I simply redirect her to something else...wait a few minutes...and then tell her "Oh look...your water is ready for your shower" She thens asks what she should do...remove her clothes? or get new ones? And we're off to the shower...no muss no fuss. I've already removed the controls to the stove...the microwave and toaster are unplugged...the oven is electronic and to confusing for her. My brother buys milk...cookies and bananas every week and my Mom 'fixes' imaginary meals for 'the imaginary children'. Big deal...sometimes the bowls are in the microwave...sometimes in the refrigerator...who cares...eventually she throws them out or I do. My Mom has her behaviors and they constantly change. And with each change comes a new move on our part. She was doing the poop wrapped in a tidy toilet paper package for a while...I found them every where...in her purse...in the refrigerator...in a drawer. So...knowing that she obviously isn't wiping after the toilet...I got big cans of Lysol spray and part of my morning routine is spraying all the door handles...light switches...and faucets and such. Mom was peeing in the bed...so I bought 3 mattress protectors and every time she pees...off go the linens and on goes a new protector and sheets. I save on electricity and time by draping the washed protector over a chair and vacuum in another room to air dry. The biggest thing is to not remove their dignity...not engage in a 'tug of war'...not tell them what they did wrong...be pleasant...be kind...and remember...each behavior has a stage...and once that behavior comes and goes...a new one takes it's place. I also bought my Mom 2 pairs of Easy Spirit slip on shoes...they toss in the wash and air dry...so this is good when she pees in her clothes and it runs into her shoes. I also learned that by telling my Mom 'no' or telling her the real reason I'm changing the bed...caused confusion and anger from denial on her part. So...I don't use the 'no' word and everything I do is because I'm the 'dumb or forgetful one'. When I do this...my Mom comes to my rescue to tell me it's ok...and that I shouldn't call myself dumb.
All this is fine if you have the ability to have someone come in and help you help yourself as the caregiver. If you do not and can not afford to pay for caregiver services, then it is next to impossible. I am my husbands only caregiver. His family is not willing to come over and take him out for a day or stay with him for a day while I get much needed relief. My husband is in the severe stage of Alzheimer's and we are together 24/7. We live off of Social Security and a small pension. Therefore I make thing stretch as much as possible. What am I to do???
Only problem with this advice is that it assumes we aren't already doing BOTH of those strategies. It is when the problem solving doesn't work (which often it does not), that is when we are left with only the emotion-focused coping to deal with the unresolved issues. It should go without saying that anyone who is dealing with situations where problem solving actually solved the problem, will be having a much better outcome than where it cannot. If you go looking for situations where people are used the emotion-focused coping techniques, what you inevitably find are the failures of the problems solving approach, because the emotion focused techniques is the only resort they had left. It's makes little sense to praise the success of one approach by comparing to the aftermath of the failure of that same approach.
Thank you for the wonderful article. I would also add, to try not to take things personally, that the person with dementia is trying to cope the best they care. My sweet Mom prior to her passing last year said, when asked how she copes: "Just bluff them ", with an Irish twinkle in her eye.
I agree that the calmer I am my husband is also. When I put too much on my plate I get anxious and it reflects on him (dementia) I read these comments daily & it supports me. Like reading your bible daily amazing support.
This article is really validating for me because it supports what I've been doing with my mom and also gives me the extra incentive to allow more time for myself. Thanks!
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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The Stress-Management Strategy Dementia Caregivers Should Adopt
I am still skeptical of the 37% slower progression claim. I'd like to see the study itself. But even if the sample was was small and the results less than reliable, it compares favorably with any drug on the market.
True, not every problem can be solved. But taking a problem-solving approach matters. Learning about the disease matters. Getting support matters. (I can't imagine what I'd done if I hadn't had a good caregivers' support group to attend.)
And it is often VERY difficult to get the personal time one needs. But believing we are entitled to it and are worthy of it is an important step in the right direction.
This article describes a very high-level general approach. It does not claim yoga will keep you sane, or eating certain foods will calm you, or your loved one will benefit if you lose weight. It is about a frame of mind and attitude rather than specific activities. I would add, along with Kitty, to learn not to take the situation personally as a critical part of the overall strategy. That is part of the solution rather than emotion approach that is worthy of being called out separately.
*We have a program at our church called-Interfaith Caregivers-these are parishioners that volunteer their time to help other parishioners with things like...transportation to the doctor...the grocery store...or bringing meals to shut ins. My husband volunteered when the economy was down and it was rewarding for him and for the people he helped.
*There is also a senior center in my Mom's city that is supported through the United Way. They have a driver that comes in the morning and picks up the elderly throughout the city. My mother has Alzheimer's dementia and so I go to her house every morning and get her ready for the bus. She grumbles sometimes...but she goes. It's good for her to get out. She's gone from 9 am to 1 pm.
*You can also check the local schools...high school and colleges...place an ad on their bulletin board. There may be a student in need of this experience to use for a paper...a class...a badge...or a resume. Always be sure to consult with their teacher or professor so you both understand the ground rules and you have an idea of the person coming to your home.
*Check with the Alzheimer's and dementia support groups in your area or call the 1-800 number...maybe there are other people in your situation that can give you additional resources...as well as them.
GayleV...you sound very angry. I can tell you from experience that the suggestions in this article are very good ones and that it is ultimately our responsibility as the caregivers to be creative in finding solutions. Dementia is a chess game...the moves are endless...we as caregivers have to counter those moves. I've found that being proactive and organized in my Mom's care has worked out the best. Also...going with the flow. I can't change what is in my Mom's head or take away the voices...the hallucinations...or the behaviors. But I can make the situations as pleasant as I can for us both. And so far...it just keeps getting easier to do this. Having a routine helps...and since implementing my routine...my Mom has begun to expect certain things to happen at a certain time. I arrive at her home the same time every morning...give or take 10 minutes...I allow her to chose things like what she wants to wear...when she doesn't want to take a shower...I don't fight with her. I simply redirect her to something else...wait a few minutes...and then tell her "Oh look...your water is ready for your shower" She thens asks what she should do...remove her clothes? or get new ones? And we're off to the shower...no muss no fuss.
I've already removed the controls to the stove...the microwave and toaster are unplugged...the oven is electronic and to confusing for her. My brother buys milk...cookies and bananas every week and my Mom 'fixes' imaginary meals for 'the imaginary children'. Big deal...sometimes the bowls are in the microwave...sometimes in the refrigerator...who cares...eventually she throws them out or I do.
My Mom has her behaviors and they constantly change. And with each change comes a new move on our part. She was doing the poop wrapped in a tidy toilet paper package for a while...I found them every where...in her purse...in the refrigerator...in a drawer. So...knowing that she obviously isn't wiping after the toilet...I got big cans of Lysol spray and part of my morning routine is spraying all the door handles...light switches...and faucets and such.
Mom was peeing in the bed...so I bought 3 mattress protectors and every time she pees...off go the linens and on goes a new protector and sheets. I save on electricity and time by draping the washed protector over a chair and vacuum in another room to air dry.
The biggest thing is to not remove their dignity...not engage in a 'tug of war'...not tell them what they did wrong...be pleasant...be kind...and remember...each behavior has a stage...and once that behavior comes and goes...a new one takes it's place.
I also bought my Mom 2 pairs of Easy Spirit slip on shoes...they toss in the wash and air dry...so this is good when she pees in her clothes and it runs into her shoes.
I also learned that by telling my Mom 'no' or telling her the real reason I'm changing the bed...caused confusion and anger from denial on her part. So...I don't use the 'no' word and everything I do is because I'm the 'dumb or forgetful one'. When I do this...my Mom comes to my rescue to tell me it's ok...and that I shouldn't call myself dumb.