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CARENOTES | Past Carenotes | Let's Talk

Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 03/22/11

I am 18 years old and I take care of my 75-year-old grandma with Alzheimerís/dementia full time. I live with her and I am severely depressed and stressed. Nobody comes to help or give me time off.  I canít even go to the doctor for myself. She is angry most of the time because she doesnít think a "kid" should be telling her what to do. She thinks it should be the other way around. I have no idea what Iím up against.  Anyone have any ideas?
 
S

 

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Name: Cindy
Location: Florida
Date: 06/05/2012
Time: 04:28 PM

Comments

Dear S, I will include you in my prayers tonight. The task you faace is impossible. I to care for someone that rarely if ever cares. There are meds to assist in the agitation you frustrated Grandmother feels. It may take a few different attempts be straight forward with her doc and request a private visit with him/her while she is at the docs office. You must get sleep and you also must ask. If your family and friends are like mine they will not help unless you ask and give them specifics about your needs. Play upbeat music in the house. Your grandmother is equally frustrated and figuring out how to word things so it is her idea is an endless challenge. Find something she can do to help her feel like she is contributing to the world. Folding clothes even though she may not do it correctly. God bless you! Love Cindy from Florida


Name:
Location:
Date: 05/18/2012
Time: 05:29 AM

Comments

You came enroll her in and place that allow her to stay home and someone can come in and help her medical should pay for it a home health aid


Name: Margarita
Location: Gainesville, VA
Date: 04/26/2011
Time: 09:50 AM

Comments

Dear S: You need to get in touch with the Alzheimer Association, the Aging Dept. in your area and state, Medicare, caregiver.com, http://thiscaringhome.org (excellent site for tips to care a person with dementia or ALZ). If you have a computer you can contact these sites for assistance and help, or you can call them. I assisted My Mother to care for my Dad via long distance for five years. I found all my resources via the net and phone. Also, use your Grandmotherís doctor to help you find agencies, help and respite care. God bless you and give you all the strength and patience you will need in this journey.


Name: Julie M&M
Location: Charlotte, NC
Date: 03/31/2011
Time: 09:04 AM

Comments

Dear S, I cannot imagine facing/surmounting the obstacles Life is asking you handle; espacially at your age. So my hat is off to you doing what must be done as best you can. My idea for you is to google CAPS/DA aka Community Assistance Program for Disabled Adults. There are CAPS services available across the country to families who are caregivers to family members. I believe your grandmother qualifies for services as long as she is receiving Medicaid. Your grandmother should be available for care and you should be relieved of much of your burden. Also consider googling / contacting Dept of Social Services, The Alzheimer's Assn and your grandmother physician. Or your physician for that matter. I hope this helps and opens the door for much help, assistance and support. You are in my thoughts.


Name: Maria Wilson
Location: San Antonio, Texas
Date: 03/23/2011
Time: 05:50 AM

Comments

Please contact your local Area Agency on Aging for some Respite care or support groups. Someone can stay with your Grandma so you can take care of what you need to do or just catch up on your sleep. Call the local Alzheimer's Association for information or tips on how to get other family members to help. Be specific when you ask others for help. Can you come stay with Grandma from 2 pm to 4 pm while I go shop for groceries? Can Grandma spend Saturday night at your house? She needs to be with other family sometimes. Does she qualify for a provider from the state? Those hours assigned to her will give you some away time to yourself. Being a Family Caregiver changes your life, no matter how well prepared a family tries to be. It's so difficult but doing it without help and having a loved one with Alzheimer's makes it much more so. I wish you the best of luck and thank you for being there for your Grandma.


Name: Susan Balla
Location: Brookfield, Ct.
Date: 03/22/2011
Time: 06:34 PM

Comments

What you are feeling is burnout. I am a caregiver and a certified nurses aid. I specialize in geriactric nursing. You need to find a good home care agency to come in and take care of your grandmother then this allows you to go to work. It might be a good idea to search out a good adult day care so your grandmother can get out of her house for a while. Don't become guilty because you can't take care of your grandmother. Leave that to the professionals.


Name: Lou Henderson
Location: Maxton, N. C.
Date: 03/22/2011
Time: 03:50 PM

Comments

You must take care of yourself.Surly you can get some type of home health care and give yourself some time off. Please do this or it will destroy you. I get two hours of home health care and it has made my life much more pleasant. I would like to know the results. Good luck and may God bless.


Name: Dale L. Ofei-Ayisi, MA, LCSW
Location: New Jersey
Date: 03/22/2011
Time: 11:31 AM

Comments

First, I would like to commend you for taking on caregiving responsibilities at such a young age - it is an extremely difficult task at any age, but most of all at a time when you should have the time and opportunities to pursue your own dreams and prepare for adulthood. Secondly, if your biological family is not there for you, for whatever reason, begin building a "psychological" family of support persons - call your local County Office on Aging and Board of Social Services for information about outreach and "respite services" designed to help your grandmother and give you a break; contact the Alzheimer's Association in your area about their services (800-272-3900); find a local caregiver support group to attend when possible; let people close to you know how badly you are hurting and DON'T SAY NO to offers of help - caregiving is not meant to be done alone! Finally, call your local hospital emergency room for information about emergency counseling services or psychiatric screening services, especially if you ever feel like hurting yourself because of your depression - if you can get the right help and just hang in there, it does get better. The best of luck to you - your grandmother is lucky to have you!


Name: Thali
Location: Erope
Date: 03/22/2011
Time: 11:30 AM

Comments

Young Gentelman - My sincerest respect and love to you for taking up this challange and for what you are up to. To begin with, embrace yourself time and again. Seems the universe provides you with an excellent opportunity to be in service of something and someone greater than you. This by itself is something to be appreciated . People your age are up to other things at this time of their lives. To fulfill your mission you MUST be taking care of yourself as good as you do for your grandma. Be kind and grateful to yourself and begin from there appreciating wht you do. . As regards to the situation, no one wants to be told what to do whether young or old and certainly when the order is alternated. In as much as I respect your Grandma's attitude there's a situation that calls forth. And the dance is between the need and the respect and dignity this situation is calling you forth to. However - vital important is that you take very good care of yourself to be able to care for your grandma. And that includes a great deal of things amongst them visiting your doctor. If you cannot do it alone hopefully she can join you while you go visit your doctor. And all attemtpts. People her age and condition create anger. I found out the best remedy to be is to forgive and love them and be with rather than get into conflict. Under the circumstances no fight, or persistency is worth an unpleasant atmosphere it is not her it's the disease and therefore make whatever you can to get someone to replace you a few hours or make fun and fun tobe with things so you both have a better time to be able to cope for the long distant run. with deep admiration Thali


Name: Stephanie Yocum
Location: Royersford, PA
Date: 03/22/2011
Time: 11:11 AM

Comments

Dear S, You are an awesome granddaughter to become the primary caregiver for your grandmother and though she can not tell you now she loves you and all that you are doing for her. I would recommend that you find an Adult Day Health Services center in your area. They are open during the day and can help find transportation for your grandmother and funding if you need it. The is the NADSA website which is the National Adult Day Services Association or the PADSA website Pennsylvania Adult Day Services Association or you can contact me and I would be happy to help you. my email is syocum@montcopa.org


Name: Jon
Location: Marshfield
Date: 03/22/2011
Time: 10:23 AM

Comments

I empathize fully as I too was a full time caregiver for 15 years for my mother with Alzheimer's disease. I had 8 siblings but "no" help. It will only get worse! Demand your family help in legitimate ways. My life has been destroyed and I do not want the same thing to happen to you. As well, have a family member actively seek out any available assistance and resources in the area. Since you are "live in" (as did I), you need time away! I'm glad you have recognized this early on as I foolishly believed I could "handle it" and soon I was drowning and no one cared enough to save me. I will keep you in my prayers that things work out for you. Demand help, whatever it takes! Remember it will only get worse and you deserve to not lose your entire life to this! It is more than one person can do! Sadly few understand the toll that will be taken, but you are not alone! In the mean time, step out for fresh air when you can. Don't forget about youself. There are no quick and easy fixes, help is what you need. Demand it!


Name: Karen Harwood MSW
Location: Boca Raton FL
Date: 03/22/2011
Time: 09:18 AM

Comments

S, You are not alone. There are many youth caregivers in the U.S., just like you. There are many resources available in the community, and your granmother probably qualifies for some type of home respite which could give you a break. Alzheimers Association probably has a local chapter, start with them. They can tell you what is available in your community. Please take a look at our website aacy.org. Feel free to give us a call if you need additional support.


Name: GINNY
Location: DEPEW,NY
Date: 03/22/2011
Time: 08:47 AM

Comments

NO WONDER YOU ARE DEPRESSED. YOU HAVE WAY TOO MUCH RESPONSIBLITY FOR ANYONE, MUCH LESS FOR ONE SO YOUNG. MAKE AN APPOINTMENT WITH YOUR LOCAL SOCIAL SERVICE, EVEN IF YOU HAVE TO BRING YOUR GRANDMOTHER ALONG. THERE ARE CHURCHES OR OTHER ORGANIZATIONS THAT OFFER ADULT DAY CARE. IN OUR AREA THEY EVEN HAVE VANS THAT WILL PICK UP AND BRING HOME THE ADULTS. DON'T TRY TO GO ALONE. I'LL BE PRAYING FOR YOU.


Name: Judith RN
Location: NurseCore Fort Worth Texas
Date: 03/22/2011
Time: 08:47 AM

Comments

You are doing a lovely thing taking care of your grandma. Try making your directions to her seem like her idea. Say "Let's do it your way" then lead her through the task. Some other phases that might help are " you are right", "show me how to...", if she is being strong willed and angry, try to redirect her attention to an activity that will lessen her anxiety such as rolling (and rerolling) a ball of yarn or kneading bread dough. Some Alzheimer's patients will spend hours at repeative tasks that remind them of the jobs or hobbies they loved prior to the disease. The time a patient spends quietly busy at a task is a great time for the caregiver to have a few quiet moments as well. Good luck.


Name: Roxanna
Location: Champaign, IL
Date: 03/22/2011
Time: 08:38 AM

Comments

Right now..call your Area Office on Aging find out who your Caregiver Support Services Advisor is and ask for HELP. There is respite available to get you time off. There is many forms Adult Day care, Homecare. The purpose of Caregiver Support is to assist family caregivers. Please make that call.


Name: Elsa
Location: Los Angeles, CA
Date: 03/22/2011
Time: 08:19 AM

Comments

Dear 18 year old Caregiver, You are a young adult and the situation of being a caregiver has put you in a role that requires a huge capacity to serve and a big heart. The fact that you are seeking help says that you care enough to want to do a better job as a caregiver. Contact the local chapter of the Alzheimer's Association or call their family support help-line and the will refer you to services nearby 800-272-3900. Remember you are not alone and you don't have to suffer in solitude and be overwhelmed and depressed. Of course, if you don't do anything about it then it will get worse. But it sounds like you are aware of the situation and willing to accept guidance and help. THat is great. You are a great caregiver for standing by you Grandmother's side, remember that it's the disease talking and if things were different she might thank you for the sacrifices you are making. Keep in touch with other caregivers, and go to a support group at least once, then you can see what other people are going through in other families. All caregiver situations are unique but you can get good advice from others. Take heart in knowing you are doing many things right!


Name:
Location:
Date: 03/22/2011
Time: 07:57 AM

Comments

First of all I am so sorry you must go through this alone. There are people who can and will help you. Look in the phone book under the Alzheimer's Association and call that number. Look under your county offices and see if there is a listing for an office on Aging or and ADRC (Aging and Disability Resource Center). Did your grandma every go to church - call them. All of these different places have people who will stand by you as you work through these challenges. If you don't get help at one number go to the next and so on and so on. I am so proud of you that you have even gotten this far. You are the kind of granddaughter many of us would like to have.


Name:
Location:
Date: 03/22/2011
Time: 07:47 AM

Comments

GOD BLESS YOU FOR CARING FOR YOUR GRANDMOTHER. CALL YOUR LOCAL COUNTY OFFICE AND ASK ABOUT GETTING SOME HELP. EXPLAIN THE SITUATION AND ASK THAT THEY SEND A CASEWORKER OUT TO THE HOUSE FOR AN ASSESSMENT. YOUR GRANDMOTHER IS ENTITLED TO HELP THRU MEDICARE AS WELL. SPEAK TO HER DR.


Name: Chris Cremean
Location: Toledo, OH
Date: 03/22/2011
Time: 07:43 AM

Comments

Locate the nearest Alzheimer's Association and start working with them on respite care, benefit programs to pay for personal care in the home and education for you to deal with the situation. Build a care team that will give her more help and give you relief.


Name: Ellie Willaman
Location: Pennsylvania
Date: 03/22/2011
Time: 07:12 AM

Comments

Dear S. This is a big responsibility for such a young person. Please look in your phone book and look for Area Agency on Aging. Talk to someone there who will be able to send someone in to your home to help you out. Also, if you're active in a church, call them and see if someone could come in to sit with Grandma while you get out to do something for yourself. There are also organizations that can help you with the care of hyour Grandma. Look under Health Care in your phone book. Her doctor's office should be able to help you out also. Meanwhile, S, please know I'm praying for you to get help .Don't give up. Are there any other siblings in your family who could help you out? How about other family members? I know so often there is just one person who is willing to help out a disabled person. I went through that myself. Please look in your phone book for help. There are also support groups on the internet and in your area for Alkeimers people who should be able to help and advise you. Call your local hospital and ask the operator there if there are support groups you could call on. We have them here . I wish you the best, S, and hope this has been of some help for you. Ellie


Name:
Location:
Date: 03/22/2011
Time: 06:23 AM

Comments

It is really unfair that you have been left with full responsible of someone with that may problems with your lack of experience and at your age. I was 50 when I started caring for my dementia father and it doesn't matter what age you are they do not want to be told what to do period.I can only hope you have expressed your concerns and needs to your parents, siblings and other relatives to give you a break and share in the caring. It is not an easy job and God bless you for doing it.


Name: Connie Siskowski
Location: Boca Raton, FL
Date: 03/22/2011
Time: 06:18 AM

Comments

Hello... It sounds like you are in a tough situation...and what you describe raises many more questions! Are you still in school? Our organization, the American Association of Caregiving Youth, exists to support the many young people who are in various caregiving situations, some even similar to yours. Please feel free to email me (connie@aacy.org) or give us a call at 561-391-7401. Another option is to call our toll free number (800-725-2512)and we will call you back.


Name: Lisa
Location: Virginia
Date: 03/22/2011
Time: 06:15 AM

Comments

S, First let me say that you are an amazing young person to be tackling such an immense challenge like this!! I've found that the right doctors can make all the difference - both in the help of our loved one - and the ability for us caregivers to cope. Talk to your grandma's Primary Care Physician to see if there is anything they can suggest to make life more tolerable for you both. And if your area has an Agency on Aging (many states do), you may be surprised at the extent of assistance they can provide; from support groups to affordable help. Good luck.


Name: Barb
Location: Alpharetta
Date: 03/22/2011
Time: 05:40 AM

Comments

S- You are very brave to help your grandmother. Best idea is to read "36 hour day" explains alot and gives ideas for caregivers- you need to get some help and a break daily- reach out to church, alzheimer groups, and many will help- remember that your Grandmother is going thru a tough time, is fearful, and anger is just part of the disease- its not directed at you...hope this helps


 







 

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