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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 - 10/02/12

My husband has frontal temporal dementia. I am so thankful to have a support group. Recently, I placed my husband in a rehab facility, hoping to qualify for a program for assisted living through Medicaid. They discharged him on the fourth day because he didn't need enough help. I told them he needed help with everything, meaning eating, bathing, toileting, meds, dressing, etc.  How did they not know? They knew he had dementia and had a very recent form from the PCP that spelled it out. 

I am having a terrible time getting a partial refund for the remainder of the week and his medication, including three Viagra that should not even be on the list! They excluded the Plavix he takes so his cardiac stents won't get clogged.  That drug is so important, his cardiologist has him stay on it even through a tooth extraction.

You live and learn. Someone should write a "book" on the secrets to nursing home care. It seems anything can and does happen.  There must be good advice to share with all of us who are stuck in the situation of eventually needing nursing home placement.  Or maybe we need a book on how to keep the loved one at home without breaking the bank.  It is becoming very difficult.

Chris

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Name: karen
Location: florida
Date: 10/11/2012
Time: 09:19 AM

Comments

I totally understand. My husband also has frontal lobe dementia (semantic dementia) and I placed him in a rehab/nursing home facility last March through the VA. I told him it was for shoulder physical therapy , which he was going to get but it was also to give me a break and see how he reacted to the facility. In just over 48 hoursw they called me to the office to tell me they were discharging him because he acted out in a speech therapy class and the therapist felt threatened. First of all I could have told them not to attempt speech therapy, this is his hot button, the dementia has left him with little to no verbal skills and it is very upsetting and frustrating for him. After they told me he was being discharged and why I had quite a conversation with them about the fact that they knew ahead of time that he was a dementia patient. Do their staff not know how to deal with this. When a dementia patient starts to get aggravated, etc the best thing to do is to STOP the activity that is causing the agitation and redirect their attention to something else. So there I was 48 hours later after placing my husband with him back. They rele4ased him back to me. Funny - the speech therapist felt threatened and they discharged him because he may become combative but they felt it was ok to give him back to me. It was a nightmare. And yes nursing homes, alf's, etc. It is quite the job to sort through all the rules & regulations. I have found that calling the different agencies over & over and asking as many questions as possible and writing down the questions & the answers & who you spoke with is the best method. I would suggest you call the ombudsman (if your state has these). Good luck. Stay strong.


Name: Linda
Location: Virginia
Date: 10/08/2012
Time: 12:22 PM

Comments

Also check for Geriatric Case Managers. There are many good people out there to assist you. Good luck.


Name: LEONARD MARCUS
Location: GLENDALE, WISCONSIN
Date: 10/07/2012
Time: 01:47 PM

Comments

CHRIS.. YOU FAILED TO SAY WHERE YOU LIVE..IF YOU HAVE MEDICARE + A SUPPLEMENT INSURANCE. ARE ELIGIBLE FOR MEDICAID?.. YOUR AGE ..HUSBANDS AGE..IS HE A VETERAN? ALL OF THESE QUESTIONS ARE VERY IMPORTANT IN ORDER TO GIVE YOU SOME ASSISTANCE. THERE ARE MANY ORGANIZATIONS AVAILABLE TO HELP YOU AT NO OR VERY LITTLE COST TO YOU.. PLEASE SEND ANOTHER LETTER WITH AS MUCH INFORMATION AS POSSIBLE AND I'M SURE THERE WILL BE SOME POSITIVE SOLUTIONS FOR YOUR DILEMMA. SINCERELY, LEN MARCUS


Name: GC
Location: MIDWEST
Date: 10/07/2012
Time: 06:36 AM

Comments

THERE IS NO PLACE LIKE HOME. AND NO MORE FRUSTRATING EXPERIENCE THAN DEALING WITH THE MEDICAL COMMUNITY AND WHAT IS COVERED AND WHAT ISN'T. TRY TO MAKE IT HAPPEN AT HOME. IT CAN BE DONE.


Name: Kim
Location: Southeast Florida
Date: 10/07/2012
Time: 06:29 AM

Comments

Chris, I have been living your story for the last four weeks!! My husband, 64, has reached the point of wandering and cannot stay at home by himself. I am younger, and am trying desparately to keep my full-time job. Luckily, Florida has terrific programs.... the secret is finding the key to unlock the doors. My best advice to you is to become a websurfer!! I have hit every available site out there, and am working to put him on "waiting" lists. There should be an easier way, but there's not! Keep your faith, ask for support and know you are not alone.... although it may seem like it at times. Good luck!


Name: Margaret
Location: Asheville
Date: 10/07/2012
Time: 05:49 AM

Comments

Every state has an ombudsman program with a designated individual appointed to help consumers of long term care rectify such situations. Call your Area Agency on Aging and make an appointment. They should be able to help you and make the facility a better place for people who come after you. Good luck!


Name: JacLynn Herron
Location: St. Paul, MN
Date: 10/04/2012
Time: 07:27 AM

Comments

Chris, I am sorry for your experience, but I can certainly relate. I HAVE written a book about my mother's 3+ years of life in a nursing home. As I advocating for my mother's quality-of-life at the end of her life, I discovered systemic problems with nursing home care (understaffing, high staff turnover, burnout, lack of corporate response) that negatively impacted her, the other residents and the care staff. As I speak at book events, audience members relate similar disappointing and scary nursing home experiences. My book sounds an alarm. It cries out for advocacy for people silenced by dementia and honest discussion about how we value our elderly.


Name: Lisa
Location: Wilmington,Ohio
Date: 10/03/2012
Time: 05:17 AM

Comments

When i was taken aback by the medical system I had been flung into with my own health problems,a friend helped me by telling me I was in the healthcare system,and not to take it personally.That has helped me get some perspective and detachment needed to learn what I needed to learn and decide which hills to battle on. You have to learn from people who have done this already so you don't reinvent the wheel. At nursing homes,just paying attention and visiting helps make sure care is given,versus the people that noone visits I've heard. Ask for help continually and learn to turn it over to your higher powers' care."This too shall pass"...is a line to help you think of when things are difficult.


Name: Chandra
Location: California
Date: 10/03/2012
Time: 12:37 AM

Comments

Check into medicaid if you are in California its called medical there is a program for long term care and the qualifications are different its a way to get them into convalescent home your Dr. has to admit them for at least three days to the hospital first check with any secondary insurance they sometimes have a different amount of days that they need to be hospitalized. Hope this helps!


Name: Ruth
Location: NC
Date: 10/02/2012
Time: 12:47 PM

Comments

If your husband is a veteran, that may qualify him (and you) for some services to help. You would need to call the Veteran Affairs office close to you.


Name: tj
Location: wv
Date: 10/02/2012
Time: 06:51 AM

Comments

The facility should complete an assessment called the MDS, this assessment is a documentation of your husbands health, his physical abiities such as toileting, eating, bathing, mental health, walking ability, ability to make decisions, take medicaitons etc. I would look at another facility, make sure his physician is on board, when he is admitted to another facility speak to the MDS coordinator,let that person know what your husband requires assistance with, make sure they know what his dementia symptoms are and how it affects his life. You can apply for long term care medicaid and after a set amount of time you can apply for waiver services and your husband can move into an assisted living facility if that is your plan. Be up front with the nursing staff and the physician about the kind of care your husband requires. good luck.


   







 

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