Show Don’t Tell – A Writer’s Advice For Caregivers

For writers, show don’t tell is the difference between: “John was being aggressive. Jane was frightened.”

And: “Stop! It’s me, Jane. I’m your daughter.” Jane ducked as the antique lamp whizzed through the air, missing her head by less than inch.

In the first example family members are left to fill in the details of what is going on. In the second one we see that John is out of control and Jane is in real danger. We feel for her and we want to help her in some way.

Showing your distant family members what you are dealing with on a daily basis may elicit a very different response than your telling them about the vile language your mother spews at you when you try to get her to eat. Or how she refuses to bathe or change clothes and hits when you try to calm her. They insist that the sweet woman they know would never act like that. You must be making it up.

You could provide example after example of the chaos dementia causes. How exhausting it is to be sleep deprived for months. How mean someone who raised you can be. How desperate you  are for a bit of understanding, a moment of peace and still they don’t get it.

So often I hear caregivers say, “Only someone who has done this can really understand what it is like.”

It’s true. What dementia does to a person cannot be expressed in mere words. So what can you do?

Show them.

Use the video camera on your cell phone as a way to communicate with your family. Brief clips of every day behavior can be emailed in moments. Show the anger and aggression, the refusal to eat and bathe. Let your family see what happens when their loved one is hallucinating and how dangerous things can get. Show your family how hopeless you become. How much you need help and understanding.

Nothing I suggest works for everyone  but at least your family will have seen for themselves what it’s really like to be a caregiver. It can’t hurt. Might help.

 

 

 

4 Reasons People with Dementia Hate to Shower & How to Fix It

shower-head

1. You asked: When asked a yes or no question a person with dementia may not understand the question and automatically answer with a resounding NO to avoid agreeing to anything they may not want.

Why? Because it’s one of the first words we learn when beginning to speak. It’s short and powerful and it works if we repeat it often enough. Instead of asking, get everything ready and then gently say, “Your shower is ready,” and lead him or her into the room.

2. Room Temperature: When preparing the room make sure it is very warm. It may feel like a sauna to you but to someone who is frail it could still feel chilly. Make sure the water is warm also but make sure it isn’t hot. Test it as you would before bathing an infant. Have plenty of soft, warm towels at hand. Warming them in the dryer just before shower time is a good idea.

3. Modesty: Most of us have some body issues and are reluctant to have others see us naked and this could be especially true of an elderly parent being bathed by one of their children.  It’s perfectly okay to wrap a towel around their chest and one over their lap and bathe them through the towel. They maintain their dignity, stay warm, and get clean all at the same time.

4. It’s Scary: Imagine sitting naked on an uncomfortable seat in a little room with sounds echoing around you. You’re not sure why you are, how you got there, or what’s going to happen. Then all of a sudden something starts falling out of the sky and hitting you on your head, chest or back.

Dementia affects vision as well as memory and other functions. The person in your care cannot see the water falling from the shower head. It’s confusing and frightening and they want nothing to do with it. (Note:  The next time you shower pay attention to the water flowing from the shower head. How well can you see it?)

To help alleviate the fear and confusion use a hand- held shower head and start at their feet, moving very slowly up the legs, talking softly as you go along, have their favorite music playing if you can. Let them wash themselves as much as possible.

When bathing is complete wrap them in warm towels even before leaving the shower and remain in the warm room until they are complete dry and clothed.

Will this work all the time for everyone? Probably not. There will come a time when showers and baths are no longer possible and bed baths are the best you can do. Until then,  try some of these suggestions they may make things just a little bit easier for both of you.

Thanksgiving with Dysphagia (Difficulty Swallowing)

Thanksgiving is the holiday most focused on gathering around the table with family and friends to share a sumptuous feast. My father-in-law, Rodger, was never one to miss a meal. He ate breakfast, lunch, and supper at precisely the same time every day. He grew up on a farm in Italy. Like most Italians he had a very healthy appetite.

When advancing Parkinson’s disease and dementia triggered severe swallowing problems I knew I had to be creative. Everything he ate had to be pureed and any liquids had to be thickened to the consistency of honey. I bought a food processor and experimented with ways prepare tasty versions of the things he loved to eat. I showed him that the mushy stuff he insisted wasn’t food was the same thing he used to eat. I had him watch me mash the potatoes, prepare the vegetables, and put them in the food processor.

“This is real food,” he finally admitted. “But it’s not as good. I need the real, real food.”

I wanted to serve him roast chicken, a baked potato and fresh green beans with a slice of apple pie with ice cream for dessert. He should have been able to eat anything he wanted. But the danger was too great.

I made a lot of thick soups and stews full of vegetables and beans. Flavor and nutrition were my main focus and when the peas turned the pureed chicken stew green I told him it was one of my Irish specialties. He ate it all.

When Thanksgiving came and the house filled with wonderful of aroma of roasting turkey and baking pies I made sure he was able to enjoy as many of his favorite dishes as possible.

Here is my recipe for A Dysphagia Thanksgiving:

Turkey – I tried pureeing both dark and white meat turkey and found it too grainy so I used a well-known brand of junior baby food and pureed it further to remove all lumps.

1 cup homemade stuffing – Place in food processor with 2 tablespoons of homemade gravy. Puree until smooth, making sure all lumps are removed. (Add gravy one teaspoon at time as needed.)

½ cup mashed potatoes – mash or puree to remove all lumps. Add gravy to the potatoes for flavor.

½ cup creamed spinach – puree until very smooth

For desert – remove crust from one slice of pumpkin pie, top with whipped cream.

At the end of the meal he said, “This is just like my wife used to make.” I knew it wasn’t true but as long as he enjoyed it there was reason to be truly thankful.

An estimated 15 million people in the United States have the current diagnosis of     Dysphagia. Patients with Dysphagia are at high risk for aspiration pneumonia which weakens them and can lead to death.  Nearly 60,000 people die each year from complications associated with swallowing disorders.  For more information on Dysphagia go to: http://dysphagia514.tripod.com/vitalstimtherapy/id1.html

Please Don’t Do This

I read a recent post on another social media site from a woman who said her mother was repeatedly asking why her parents never came to see her. The woman in care is elderly and her parents have been gone for many years. The advice she received from a paid caregiver made me cringe and shout out NO!!!!!!! despite the fact that I was alone in my home and no one would hear me.

I am writing today to let my voice be heard loud and clear. Don’t Do It! 

So, here’s what the caregiver told her to do.

“Take your mother to cemetery to see their graves.”

Please DO NOT DO IT.  Imagine you have dementia and in your mind you are somewhere back in time, longing to see your parents, and someone puts you in a car and takes you to a cemetery to show you their headstones. Imagine the shock and pain you would feel. The grief would be as overwhelming as it was the day they passed and even if she accepts it in the moment she will forget and start asking again.

I suggest telling her something like this, “They are away right now and will visit when they can.”

What do you think of the caregivers advice and what would you say in that situation?

Mesothelioma Caregiver: You Are Bold, Strong, And Not Alone

Welcome Guest Blogger, Nicole Godfrey, writer and community outreach associate for Mesothelioma Guide.

In the words of Brett H. Lewis, “Health is by chance – Caregiving is by choice.” Caregiving is a huge responsibility, but you must remember that you are only human. You must also remember that the person that you’re caring for is still the same person. Don’t let a diagnosis change your point of view about them.

Mesothelioma Guide is dedicated to helping mesothelioma patients thrive, which includes providing information and support to their caregivers.

What to Expect

There are several factors to take into consideration when it comes to assuming the role of caregiver. As a caregiver to a mesothelioma patient, your role is going to change as the patient’s disease develops. The patient’s state of health may improve or it may decline.

Here are a few responsibilities you may have

  •  Feeding, dressing, bathing
  • Managing medication
  •   Providing transportation

Your duties as a caregiver are to assist in the day-to-day activities of the patient. You will not only monitor their health and provide them companionship, but you will find yourself being a part of a big decision making process. You will help them make decisions about their treatments, their financial and legal issues, their insurance, and their end-of-life treatment.

Don’t Forget About Yourself

As a caregiver you are going to find yourself being a huge part of someone else’s life, but you must remember that you are an important factor to making your role successful.

It is completely ok to take a timeout and to assess the new responsibilities that you are having to adapt to.

Here are a few tips to any caregiver

  • Rest
  • Take care of yourself physically
  • Accept help from others
  • Seek the aid of respite help

Read Mesothelioma Guide’s blog for more information on how to take care of yourself as a mesothelioma caretaker.

Talk About It

You are going to find yourself being a whirlwind of emotions. You are going to be scared. You are going to be angry. And that is ok. However, don’t bottle up your emotions. Talking about the circumstances can be your best dose of medicine.

You can always talk directly to the person who you are caring for. By doing this, you can address any questions you may have. Also, this allows you and the patient to express how you are both feeling. However, if the person you are caring for doesn’t want to talk, or you find it difficult to talk to them, you can always explore the option of support groups.

Support groups aren’t just for the patient. Some of these groups are designed specifically to help caregivers. Support groups help a person to stay both positive and hopeful. A person can attend a support group meeting in person, by a phone conference, or online.

It has also been proven that support groups can

  • Reduce stress
  • Provide inspiration
  • Offer comfort

You must remember that you are not alone. Support groups are designed to create a community where people can talk about their disease or it gives caregivers a chance to express their concerns about caring for someone with a disease.

Sources:

Quote: https://www.goodreads.com/author/quotes/6546527.Brett_H_Lewis

https://www.mesotheliomaguide.com/community/caregivers/

https://www.mesotheliomaguide.com/community/the-nurses-corner-9-ways-mesothelioma-caregivers-can-care-for-themselves-too/

https://www.mesotheliomaguide.com/community/support/

Four of the Saddest Words Ever Spoken

She doesn’t remember me.

I hope my children never have a reason to say them. But it could happen. If it does I hope they understand that even in my confused mind they are still a part of me.

By the time I reach that point I will have lost much already.

My short term memory.

My rich vocabulary.

My love of long, hot showers.

My ability to cook.

My driver’s license or even how to find my way home if I did still have that privilege.

 

I pray I’ll still have the ability to read and understand the words my favorite authors have so painstakingly crafted. A world without books would be barren indeed for someone who loves to read as much as I do.

Alzheimer’s or some other form of dementia will have taken me somewhere back in time.

Perhaps I am reliving my days as a busy young mother and you, my darling daughter or son, are still in elementary school. You have not yet grown into the wonderful adult you will become.  I see you pink cheeked and out of breath after running up the steps, opening the screen door, and calling out, “Mom, I’m home. Guess what I got on my spelling test today!”

It may not seem like it in the moment but the memory of you is deeply implanted in my heart. The heart that beat so close to yours during the time I carried you. The heart that cried with you when you were hurt and rejoiced with you when you achieved a goal.

If the day comes when I look at you and ask, “Who are you?” I hope you will smile, give me your name, and tell me about your mother.

I love you. I pray you never forget that.

Dr. Phil: Please help support caregivers via the Dr. Phil Foundation. Caregivers are in desperate need of respite and you can help make it happen.

Caregiver Support Coming to Purcellville, VA

I’ve been away from the blog far longer than I planned. However, being a caregiver and all that entails is never far from my heart and mind.  One of the most important and meaningful things I’ve been doing while away from the keyboard is training to be a Caregiver Support Group Facilitator through Alz.org.

Here are the details of where and when this group will meet.

Caregiver Support Group, Purcellville, VA, 20132

When: Thu, April 28, 3pm – 4pm
Where: The Carver Center, 200 Willie Palmer Drive, Purcellville, VA, 20132 (map)
Description: Alzheimer’s Association Support Groups Alzheimer’s Association support groups provide a place for people with Alzheimer’s, their caregivers, family members, and/or friends to share valuable information, caregiving tips and concerns throughout the Alzheimer’s journey. Groups are facilitated by trained leaders and are ongoing, free and open to the community. Please call our 24/7 Helpline (800-272-3900) or contact the facilitator directly for more information and to confirm date and time. The Carver Center | 200 Willie Palmer Drive, Purcellville, VA, 20132 | Bobbi Carducci, bcarducci@comcast.net

For information on where to fond a support group near you go to: http://www.alz.org/nca/in_my_community_support.asp

If you are a support group facilitator I’d like to hear from you. Perhaps you’d be willing to share resources or tips on what your group finds useful. If you attend a support group I’d love to hear about how your group has helped you.

I Prefer to Take Life One Panic Attack at a Time

panic attackPanic attacks, migraine headaches, clumps of my hair clogging the shower drain. These are all things I experienced as a caregiver.  Stress was sapping my mental and physical reserves as his conditions worsened. I needed help.  People said, “Take care of yourself. Eat right. Exercise. Get enough rest.”

Sure, I thought.  I’ll get right on that.

Are you kidding me?  If I were to be true to my instincts right now this page would be filled with some very strong, unbecoming language describing how useless advice is when it isn’t followed up with the resources to make a difference.

I’ve issued a challenge to Dr. Phil but it is also for family and friends of caregivers everywhere. The people caring for others now will be the ones needing care next. How dire their health issues will be are being greatly influenced by the degree of stress they are experiencing during the weeks, months, and years they are giving so much of themselves. You can make a difference.

If you can give much help, give much. If you can give only a little, give a little. A warm meal, short nap, a visit now and then will be appreciated more than you know. A full night’s rest is a blessing. Time to go to the grocery store and take in the aroma of fresh fruit could be like a vacation for someone who hadn’t been able to do it in months.

Please help!

More Comments for Dr. Phil in response to the Dr. Phil challenge:

Ann  – Comment: I agree. I am a cancer patient and my energy level is very low.

My husband is the caregiver for me and his mom who has dementia. I would love to see some real programs that would help caregivers cope. My husband is a loving caring person but I know at times it seems very overbearing to him.

Tammie Marett – Comment: I take care of my bedridden husband. He has no other family and we live over. 8 hours from mine who couldn’t help much anyway.  I would love to take your advice bit its all the same mumbo jumbo. There is no money for caregivers. My husband is a vet.  They offer me 2 respite days a month of only 6 hours each time.  You offered no solutions just the same tired advice.  This problem is going to get larger as the baby boomer generation ages.

Kristi Simmons – Comment: I am living the Oreo life. My husband and I are caregivers for my mother for the last 5 years.  I also have a 21 year old a 10 year old and a 6 year old.  My husband and I both work 40 hours a week. I have 3 siblings. My oldest brother takes care of my mom’s finances, which creates its own tension sometimes.  My other two siblings do nothing to help and often feel like it’s our responsibility to care for mom since we live with her rent free.  They don’t understand the mental and physical drain this can be.  We’re lucky, my mom is good natured and fairly easy to care for the majority of the time, but it’s hard to be caregiver, mother, teacher and wife 24/7 365.   We’ve been lucky enough to have friends that mom is comfortable enough with to stay with her so we caN take short trips with our kids occasionally.  Unless you’ve done this you have no clue how exhausting it is

Kathleen Tingler – Comment: I agree with your take on offering advice and not an alternative.  I am a full time care taker and have no one that wants to step up and help me find a way to catch a break even for an hour or so a week.

Rhonda Partin-Sharp – Comment: Oh, I agree with this article – gives us caregivers a way to take care of ourselves – when you are going on two hours of sleep a night because that is the ONLY way to get just the priorities done because you are taking care of two elderly parents – don’t tell me to get sufficient sleep.  That’s insane.  We need to stop telling the caregivers what to do better and need to start telling the lazy family members (every caregiver support group will tell you that it usually ends up being one person doing it all with not only no help from the family but judgment and pressure from the family) what they need to to do help.

Shannon Watstler – Comment: Yes please, caregivers do not always need unsolicited advise, just real quality help ! Many friends & family abandoned, compare their normal every day situations & give excuses “why they can’t help” or “they just want to know how the patient is & then have to go”. It’s a exhausting & never ending job, non-paying & sometimes you truly feel hopeless. If I ever have to go thru this again, I will def do things a little different & ask for more help. many people don’t handle situations of thinking about their own mortality-that’s sad ! How would they like to be in the same situation & hear excuses of why someone can’t help or just abandonment. It’s a lonely journey that no one understands except those that go thru it & are forced to deal with it head on every day even when they’d enjoy a few minutes of time for themselves.

Dawn D. Ames – Comment: This comment was right on.  My husband needs 24/7 care.  Getting out to get my owe scripts and groceries is extremely  difficult.  My children and a few friends try to help, but with his needs, the it is not always possible.  It has been three years.  It would be nice to have a couple of hours for church or to go out with friends in those times when I feel safe enough to leave him. Thanks Bobbi.

To Contact Dr.Phil and add your voice to mine click on the links below.

http://drphilfoundation.org/

http://www.drphil.com/

@DrPhil

https://www.facebook.com/drphilshow?fref=ts

Not Everyone Agrees With the Dr. Phil Challenge … Many More Do

Yesterday, in response to my post titled Caregivers Are Joining the Dr. Phil Challenge  I received the following comments from  a man taking exception to my efforts to get Dr. Phil to help.  Presented here are his views and my responses. I respect his right to express his opinions just as I respect the comments of the caregivers that I will post as they come in. Including some at the end of this very long post.

Note: I wonder if David  realizes how many of his statements  highlight exactly why I am pleading with Dr. Phil to respond. Read on and see for yourself.

David Blair – You never were clear on what you thought Dr. Phil should have done for this woman? He obviously has a huge network of resources, but mostly for people with drug & psychological problem. After all that’s his profession. When he offers his support during the show it’s largely an effort to showcase, well advertise for these centers. And the guest gets free help as a result.  He doesn’t work with any day spas? How can you be certain the show didn’t help her financially, probably not something they would have aired.

The Imperfect Caregiver (Bobbi Carducci) – I am asking the Dr. Phil Foundation to establish grants to offset the costs of respite care. Even a few hours a week would be an enormous help for so many.

David Blair – Well, as some of your commenters pointed out – there are currently millions of people in that situation. You don’t think Dr. Phil has THAT kinda money. This goes on in nearly every family in this country.  My mom spent and amazing amount of time caring for my grandparents. I think it’s a situation many find themselves in. Families have to step up. Dr. Phil can fix a lot, but he can’t make family members compassionate if they don’t choose to be? Just asking you consider the scale of what you are expecting.

The Imperfect Caregiver – Bobbi Carducci – I hear you. I don’t expect him to fund it all. I’m asking for an opportunity to use his resources to get the message out about what it’s really like and offer SOME funding via the Dr. Phil Foundation for some in desperate need. He dropped the ball when he asked that young woman what was the hardest part of caring for her father and she said, “lifting him several times a day,” and his response was to tell her not to feel guilty about wanting time for herself. Do I think Dr. Phil has THAT kind of money? No. Do I think he can inspire others to help? Yes, I do. Just as I don’t expect him to end domestic violence himself or fix every drug addict alone. He does assist some and that is what I am hoping for and asking from him. Get the dialog and the support moving.

David Blair – I think he did use his resources to get the message out. I admit, probably the only show I watch regularly. THAT”S RIGHT! (don’t care what anyone think either.)

He’s a smart guy. Every time I’m wondering what the fu@k’s he gonna say about that? But he always says the right thing – and always a 180 from what I’d say)

Not meaning to sound unsympathetic to your cause but trying to set up a fund then try to decide (based on I don’t know what) who should get the money the logistics of which are unimaginable! Not his job or responsibility. His only responsibility is to entertain me at 3 o’clock.)

The Imperfect Caregiver – Bobbi Carducci – Thank you for your thoughts on this. Enjoy the show.

 Read More Comments by Caregiver’s Joining the Dr. Phil Challenge:

Donna Thomson – Comment: Great idea, Bobbi!  Have you written to the foundation?  Where are they based – perhaps a personal meeting or skype meeting would be appropriate.  Well done for identifying this opportunity!

doggonedmysteries Margaret Hauser –  Comment: It’s easy to give advice when you aren’t the caregiver. I consider myself lucky when The Curmudgeon, my husband who has secondary progressive Multiple Sclerosis, is having a good enough day where I can leave him alone for a couple of hours.I can’t afford to have someone come in and give me a break. We live on his meager disability income because I can’t leave him alone for more than a couple of hours at a time. Some days not at all, depending on how bad his day is.

I haven’t had a real break in over a year. How about if Dr. Phil comes over and takes care of The Curmudgeon for a week and finds out what it is really like?I bet he wouldn’t be quite so free with his ‘advice to caregivers on taking care of themselves’ when he finds out that is not an easy thing to do when you have to take care of a home and a patient. I am not now nor have I ever been a nurse, so this is truly difficult.

Lisa Land – Comment: I am a caregiver for my 89 yr old father and saw the show as well. I wondered the same thing, why did he NOT help this girl? So many of us including myself are caregiving without an income and living off of the income of our carees, which is Social Security and is keeping us just above the poverty level. I am forwarding this to everyone I can to sign and get recognition.

Cathy Kelly – Comment: I am a caregiver for my friend and also was for his parents because there wasnt anyone else.  I am stuck here trying to get him help so I can get out. 8 years worth of ongoing stress is far too much. Help! Please! I dont want to go down with the ship.

Laura Walsh – Comment: amen to that , my husband can not be left alone, after massive stroke , bed ridden , hoyer lift to wheel chair  , canot speak or do anything for hmself  … we know what to do , but never get a chance to do it , all my energy is put into care giving and cooking and cleaning and ordering meds and doing every single need for my husband , all day long , every day , and in the middle of the night , every night … going on 4 years now !!! wearing pretty thin !!! It is almost an insult for someone to say remember to take care of yourself first , so you can take care of him , I know they mean well , but >>>>>

Jennien Seymour – Comment: well Dr Phil..unless you have given up your independence, place to live, and your job…to care for someone 24/7….you have no idea what it is like…there for you can not give advice on something you have no idea about.

Janet Ogaick – Comment: as a caregiver to my father until he passed away your advice truly means nothing what I needed was someone to help so I could have time for me time to be a mother to my 4 children time to unwind I don’t regret being my fathers caregiver he did for me and it was my turn to do for him but an hour or two a week it would have been wonderful

Carlene Reaves  – Comment: Thank you Dr. Phil for recognizing caregivers and how awesome they are. It would have been nice if you would have helped her do what you advised her to do. Much love!

Theresa Loder – Comment: as a caregiver for the past 20 years .. Parents, mother in law , and now for my husband who has many health issues, I often hear( at least once a day) for me to take care of myself..

I do my best to do that .. But it’s very hard for people not caregiving to understand the moment to moment challenges we all face.. Yes , it would be nice it someone who has a platform , to offer actual help to caregivers..

It is very hard to find any kind of respite out there..

Currently I am trying to get well from Bronchitis I picked up either in the hospital or nursing home where my husband had been recently.. He ended up with pneumonia..

This is the first time I had to go to the ER for myself .. We caregivers would appreciate any and all actual help we can receive by way of letting people know the challenges we face on a minute to minute basis. Most all of us are going to be faced with this someday… There needs to be lots of discussion about all things caregiving… Sooner rather than .  positive thoughts to all caregivers out there.. Theresa Loder

Contact Dr. Phil and add your voice to the Imperfect Caregiver challenge: http://drphilfoundation.org/  http://www.drphil.com/   @DrPhil   https://www.facebook.com/drphilshow?fref=ts

 

More caregiver comments tomorrow.

Caregivers Are Joining the Dr. Phil Challenge – Add Your Voice

Dr. Phil, I challenge you to use your huge resources and the Dr. Phil Foundation to develop a program of grants to help caregivers follow your advice to accept help, rest, and take care of themselves so they can continue to care for those they love so much that they are willing to sacrifice their health to for them. Respite care is vital for caregivers and you can help provide it.

On May 30, 2015 I issued the challenge above to Dr. Phil to provide real help for caregivers instead of the same old advice to rest, eat right, exercise, take time to herself and not feel guilty that he told a young caregiver on the Dr. Phil Show on May 26th.

While only two responses appear in the message box on that initial post, I received many more via email and I will be posting them a few at a time so their voices are heard.

Please share these blog posts with as many people as possible and encourage them to do the same. There is strength in numbers and ours are growing every day.

Dr. Phil, Caregivers need help!

Jennifer Bailey – Comment: This woman is under as much stress as the people dealing with abuse- the abused never knows when he or she may be hit next, and on guard when the abuser is near, but the caretaker has to care for someone, worry at the things they see going wrong in front of their eyes… and when we are gone we have to wonder if those things are happening. Even when we have respite care you worry because the person does not know your loved one as well, and because they are alone with a person and often either helpless or have the potential to become violent when confused. We sleep when the loved one is safe, and often wake up to any small sound, like a parent of a small child. We eat when we can in our tasks, and for many of us it’s what we can afford after limiting our work hours to care for the person. Platitudes and the advice on every caregiver’s website do not help us.

Susan house – Comment: We need help usually only one person steps up to care for their loved one but boy everyone else has a lot of advice..there is no help there is no relief unless you have lots of money to spend..my husband and I would love to go in a vacation and know my mom was safe and cared for but can’t afford $15per hour x 24hrs x however many days I’m 59 yrs old my husband is 60 if mom lives 10 more years what if those are the best ten my husband and I have left..because with the stress of taking care of my mom whom I love and will care for until I can’t..May be that stress will kill me..sometimes you just need a break you just need to breathe you just need to…..and there’s no affordable help and how do u know if you hire someone that they will treat your loved one they way they should.there are no regulations to assure this its hire at your own risk and pay crazy money to a person who may not care..yes Dr Phil the number of people caring for dementia people is enough to blow your mind and more everyday and younger everyday there’s no cure no help no relief. You have to look at a shell of your loved one everyday. I pray my mom has a heart attack. Or gets cancer..something that will take her fast and soon..it’s quality of life not quantity..I don’t want her to not know me..my dad died from Parkinson’s and if I get sick I’d rather have dad’s disease any day to this…please help up we are everywhere nationwide. Crying everyday for the loss of our loved ones and all we have is a Alzheimer’s dementia page where we all go to share and vent and look for support..from each other..no one care about the millions of loved ones and the caregivers..no one wants to see what we struggle with everyday..just pray it never happens to you or someone you love because you will end up just like us with no one to turn to…am I a horrible daughter because I tuck my mom in bed every night and tell her I love her and then go and pray please God take her tonight!! And if he does I will find her in the morning and beg him to bring her back cause life without her seems unbearable..and then I realize she’s almost already gone

Vixen Brumback Comment: Please show more consern for caregivers.

Basia Comment: Please provide additional support for caregivers.

Jean Ostrom -Comment: I would love to be able to exercise regularly.  I haven’t had a full-night sleep in over a year.  I haven’t gone to a movie, a concert or gone shopping with my friends.  People keep telling me I have to take care of myself, but that is impossible when I am ALWAYS taking care of my husband.

Debbie DunlapComment: I am a caregiver as well. We need help. Have the best insurance but so many rules it does us no good. However if my Dad was in Welfare we would have had help yesterday. Not a fair system

Audrey Besser – Comment: I care for my mother-in-law.  I would be willing to brain storm a way to start a support group to help each other’s household to let caregivers have there needed rest and relax time, including sharing adult care .  Yes disappointed about the lack of support by family & society.

Joanne GerrardComment: Caregivers need the help and support and respite that gives them the help they need to give the care their loved one needs.

Margaret SmithComment: Caring for others is a challenge. We could use help at times.

Sherie Lynn AndersonComment: I support the challenge.

 R F – Comment: As the mother of a 15 year old son with autism I wholeheartedly identify with this article.  Being a caregiver is mentally and physically demanding.  The caregiver is often isolated with little to no support from family and friends. Cheap advice is easy to shell out.  People don’t know and they don’t want to know.

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**** Read a Related Post : Stop Telling Caregivers to Take A Break

 

 

 

 

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