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CARENOTES / Past Carenotes / Discussion Forum

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 - 03/28/08

My mother has a rare type of Alzheimer's (can't remember the name) that starts in the back of the brain first; effecting the senses rather than memory. Her condition is pretty severe with it now effecting her memory and her ability to get words out. She's nearly blind and can hardly feed herself. I give her showers, dress her, make her food, help her to the bathroom etc. etc. She has mild seizures daily (with them happening most often out in public for some reason) which she takes medicine for, she also has a thyroid problem which means a lot of things but mainly her appetite is nearly non-existent and she is always cold. (which she also takes medicine for).

Anyways, she has very little income which she gets from my father's retirement plan ($140 monthly) and he passed away nearly 10 years ago. Right now I am living with her and my two brothers. I have a that usually brings in anywhere from $800-$1200 monthly. My other makes barely enough to pay his car payment. My bigger brother is a drunk. He's been drinking for 10 years and has massive seizures if he doesn't get enough alcohol. He has no job and can't hold one either.

I am selling my current house and my mother and I are moving into a smaller one which we are renting. My brothers are not moving with us for a few reasons. 1)  They hardly help my mom now. They DO help, just not anything I couldn't do by myself if I didn't work.  2) They can hardly carry their own weight let alone my mom's financially speaking. 3) Not enough space in the new house. 4) They don't clean up after themselves and I'm sick of being house maid.

Rent will be $1095 monthly. She will be paying for rent (which is coming from investments she had piled up) and I will hopefully be paying for all other bills. She is at a point where she needs someone there whenever she is awake. Hospice care can be expensive. (and I will NEVER put her in a care home EVER) Now I've been thinking lately...

My question is, how much would hospice care cost me when I work 25 hour weeks? I live in Las Vegas Nevada and I am 19, if there is any programs you can recommend please tell me! Any advice or anything you can do to help me figure this out will be greatly appreciated.

 

(This carenote was taken from our discussion forum and has been scaled down for this newsletter.  To read the entire post, go to our forum at http://forum.caregiver.com.  Select the category "The Need to Share" and the post is "Need Some Serious Advice".) 

 

View Comments


name: Sharon
location: Little Rock, AR
Email: picventure@aol.com
Date: 28 Mar 2008

Comments

My goodness, what a burden you have at only 19! Your mother is so lucky to have you to take care of her. Have you checked into your state Human Services or Aging programs to see what your mother might be eligible to receive? She should be eligible for federal programs, including Medicaid (depending upon how much she has in savings from her investments) and Medicare. I don't know about all states, but Hospice generally does not charge, however, it is for patients who are not expected to recover from their medical conditions in the near future (different places define it different ways). I suggest you contact a social worker at a nearby hospital and explain your situation. Many of them know a lot about available programs and services, but I also learned when I cared for my aunt at home that the Internet and just calling all agencies in my area turned up things that they didn't know about. Bless you for taking such good care of your mother. Please feel free to email me anytime if you just want to vent or ask questions, etc. Many of us reading this newsletter have been there and understand what you are facing.


name: Maria Wilson
location: San Antonio, Texas
Email: mwilson@aacog.com
Date: 28 Mar 2008

Comments

Call your local Area Agency on Aging if your mom is at least 60. They can assist with several things, like a provider to help with your mom's care. They can also help with financial things like funds toward a utility bill or meds or possibly a Caregiver support group. They can also help you apply for the state Long Term Care services, which is an income based program. The National number will send you to your local AAA, 1-800-213-8471. Call your local Alzheimer's Association for help dealing with your mom's care. Give yourself permission to to be your mother's Caregiver and not your brothers' Caregiver. Your mom needs for you to make the best possible choices for yourself so that you can continue to be an effective Caregiver for her. I can't believe you're only 19. Best wishes, my prayers are with you.


name: beth
location: south carolina
Email:
Date: 28 Mar 2008

Comments

Hi, I feel your pain and decisions for your loved one can be hard to make. I have a mother whose Alzheimer's is not as severe as what you described. A good place to start with planning and getting some needed help is The Alzheimer Foundation. There should be a group near you and there are support groups that meet regularly. I know you love your mother and want the best for her. There are a lot of experts in the field, doctors, therapists etc... Please listen. I know I did and am grateful. This is a hard disease to care for. Eventually I put my mother in assisted living. She is the happiest I have ever seen her because she gets excellent care and feels safe. At home she became paranoid and fearful of any small thing out of the ordinary. No decision is easy in your situation but there are some wonderful people to help, I have found that to be so, also be careful of those who are just opportunist.


name: Juanita
location: Washington
Email: jrodboots@msn.com
Date: 28 Mar 2008

Comments

Oh my!! Sweetie you do have your hands and heart full!! I agree with the two ladies Sharon and Maria who sent you comments about going to agencies and the social worker at the nearest hospital. Also check with the nearest Senior Center they also have lists of agencies. Be sure you find support for you too. A support group can offer group and individual support. Check with those agencies for the nearest groups. I will keep you in my prayers and thoughts.


name:
location: Ohio
Email:
Date: 28 Mar 2008

Comments

Hospice care doesn't cost anything- its covered under part of the Medicare plan. they can provide aides to come in and Bathe her, toilet her, provide companionship, Volunteers can come in and sit with her while you are out of the house, cook meals and make sure she eats. and provide companionship. Help with her laundry etc. sounds like you need to see a lawyer to make sure you have Durable power of Attourney over her financial and medical decisions. and Guardianship. If she has that much money to pay rent with , You could have hired help to come in and help take care of her instead of you doing it 24/7.. Respite help which would allow you to have a day off now and again is available too. Other Comments have suggested contacting a Social Worker at a nursing home or council on Aging or The Alzheimers Association to get more information, HER DOCTOR should have offered this info to you long time ago as from your info above Your Mother is is need of MORE Hands on Care and supervison which is getting more than you can handle physically at this point. You can talk to the Doctor because there are programs available for Someone like your Mother- Plus check into Local Long Term Care facilities- Many are very good and have staff that can take care of your Mother 24/7- Wouldn't it be nicer /easier to visit with her for a couple of Quality Hours 1:1 just be to be with her...??? Don't feel Guilty if you are having second thoughts about placing her in a Long Term Care Home.... Plus you are NOT under any obligation to take care of your brothers. Bless you for trying...especially at age 19.. How old in your Mother...?


name: steve
location: rhode island
Email: hapfra@aol.com
Date: 28 Mar 2008

Comments

As far as I know--Hospice is paid for by medicare......You might want to check with your local area on aging as well, and the Alzheimer's Association. Good luck on your caregiver journey.


name: LKJ
location: Texas
Email: lkj336@hotmail.com
Date: 28 Mar 2008

Comments

Hospice is ordered by a doctor when a patient generally has less than 6 months to live. Hospice is a service that will go to the patient where ever they are. I have worked health insurance for 18 yrs (a couple of years paying Medicare claims). I have a cousin who is an administrator at a hospice. I just went thru caring for my 83 yr old aunt the last 2 weeks of her life. She passed away Sept 2007. My aunt had no children, so I was her Durable Power of Attorney and Medical Power of Attorney. She had a heart attack, was put on life support, but rallied when the life support was removed. The doctor ordered hospice. I moved her from the hospital to a nursing home. (I called the same hospice where my cousin works, but since I am in a different county, the hospice was out of a different office than the one my cousin works at. ) The hospice intake worker did all the paperwork and had my aunt sign a living will and other necessary papers for my aunt to be DNR. A hospice nurse visited my aunt twice a week and an aide came to help her bathe three times a week. They said as her condition progressed, they would end up visiting daily. When a patient goes to a nursing home, Medicare will not pay for both hospice and the nursing home. If on hospice, then the family pays for the nursing home. Best to get on Medicaid and they will pay for both the nursing home and Hospice. Hospice's goal is suppose to be to make a patient comfortable and let them die naturally without great efforts to extend their life. One day when my aunt was in great pain, it took 5 hours for the hospice nurse to arrive and order a pain medicine. Later I was told by the nursing home that they already had an order for pain medicine. My aunt had suffered for 5 hours for no reason. When my aunt went into respiratory failure, the nursing home called me at 5 am and asked me if I wanted her moved to the hospital. I said yes and the nursing home called 911. Within an hour a hospice social worked arrived at the hospital to let me know that by moving her back to the hospital that I had canceled their services. A few weeks after my aunt passed away, I received the explanation of benefits from Medicare. The EOB showed that the hospice had charged $175.00 every day that my aunt was in the nursing home, but they did not come every day. So they were paid even on the days that they did not work. I would like a job like that. I was at the nursing home at least twice a day during my aunt's two week stay. I do not feel that the hospice gave any better care than the nursing home and the nursing home doctor would have done. If the patient is in a nursing home, let the nurses there care for the patient (and forget hospice) and let Medicare pay the nursing home. There is no need for a hospice service if a nursing home is being used. If the patient is at home, yes, a hospice would be needed. Keep records of the hospice visits and don't allow them to bill Medicare for days they did not come to see the patient. Hospice provides a nurse and an aide, the prescriptions, diapers, oxygen, wheelchair, special bed and other supplies, but don't expect to ever have the hospice doctor visit the patient. The hospice nurse reports to the doctor and he will never see the patient. If the patient does survive longer than 6 months, a doctor has to renew the order for hospice. I had an uncle on hospice almost a year at his home. I also have my 88 year old mom who has been in a nursing home for the last 3 years. My mom is on Medicaid and has been taken better care of than my aunt, who was in a spend down facility on Medicare and hospice. Taking care of a parent who is sick is a very big job. It is not a job for one person. You have to be able to get some relief and have time to go shopping, go out with friends, etc. If you don't, you will become sick yourself. If you do need to find a good nursing home, go to Medicare dot gov scroll down to nursing homes and put in your zip code. It is a free site. Chose at least 3 nursing homes that have less that 8 marks against them. Also, look at what the marks are for. Sometimes it is a bad mark for not turning in paperwork, or it could be for patient abuse and not checking for criminal bad grounds. This site also has whether a facility has fire hazards. For a more detailed report, go to Healthgrades dot com. Put in the zip code again and for about $20 you can chose up to about 10 nursing homes to compare in your area. Before signing your mom into a nursing home, try to find someone to help you look at her finances. Senior Asset Protection is one in my area. They know how to protect assets and help people to qualify for Medicaid without losing everything. Or look for an Eldercare Attorney or Medicaid Attorney by using Google. They will meet with you for an hour for no cost and it would be very helpful. Good luck and email me if you need to discuss anything.


name: Alana
location: Detroit
Email: alanabrisson@yahoo.com
Date: 30 Mar 2008

Comments

The Alzheimer's Association in your area have a lot of resources that may help you and your Mother. Also, Hospice care is covered by insurance, depending on your Mother's age. I work for Odyssey Hospice in Detroit and we have an office in Las Vegas that you can contact for more information. Hospice provides medical equipment, supplies, and medication and we can provide services in your home. Best wishes to you and your Mom.


 







 

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