6 replies to this topic

[quadsis]

Hello Everyone,

My younger sis has been quadriplegic for 14 years now. She is 42 years old and married.

Our family is in such a quandry about my sister's care. This is a complex saga so here goes...

Sister paralyzed on '84 when attacked by 2 guys she "knew" and went with willingly. Husband at-the-time divorced her. She married a double transplant patient 2 years later. The two of them were convicted of arson for the burning of their home a year later. Both received 5 years probation. Her husband committed a felony crime during probation and was imprisoned 5 years. He was released several weeks ago and living 900 miles away from sis.

During my BIL's incarceration, sis has been living with Mom (5 years now). Mom is 73, in great health, but is exhausted and at her breaking point trying to care for my sis. Sis is irresponsible, ungrateful and demanding with Mom.

Now sis is in ICU with serious pneumonia. Our other sister is a nurse and talked with the Case Manager about alternative housing for sis. Mom is feeling very guilty, even though she has gone above and beyond the call-of-duty caring for my sis. Dad passed away last Easter and Mom has sacrificed SO MUCH of herself for sis.

My question is...as a disabled person, how do you think finding new living arrangements should be handled given this kind of situation?


As a caregiver...Same question, but if you have been through this personally how did you go about dealing with EVERYTHING?

This probably seems quite vague, so ask any questions you might have and that I haven't covered.

Thank You So Much In Advance. We are at our wits end!

quadsis

[deb morel]

I am facing the same dilemna. My mom was taking care of my sister after she was left a quadraplegic after being attacked (2 years ago). She has been living in assisted living, but I think her care is even too much for them (high c4/c5 injury) so the insurance care worker wants her to go to a skilled nursing facility. I think they are just trying to control their costs and she can stay in the home even though she ends up in the hospital every couple of months with a health issue. NF are scary because of the issue with institutional infections and my sister's low immune system. She is also currently in the hospital with respitory issues as a result of catching a cold.

My sister is scared to death to go to a nursing facility... she is only 40 and wants a higher quality of life. Not sure what to do. There isn't ANYTHING on the internet that helps us find appropriate housing/service level for young disabled adults.

So frustrated. I have spent 4 hours online tonight looking for something in AZ.

[doublelibra]

This issue hits home for me, because I became quadriplegic at age 41 and spent 8-1/2 mos. in a nursing home. It was very traumatic to me. There was too little staff to provide adequate care, and some staff were abusive. The atmosphere was unsanitary and morbid. I made reports to the State twice, which were "investigated" and no deficiencies were found. I was evaluated by the State when I finally found an accessible apartment to live in with my two children, after 1-1/2 years in hospital, rehab, and nursing home. They told me that I needed 24-hour care, and they rejected the budget for it. They told me I would have to stay in the nursing home. I contacted an attorney to find out my rights. She said they couldn't make me stay in the nursing home unless I was mentally incompetent. I told the caseworker that I knew my rights, and said, "I'm going home. How much care will you give me?" They decided on 12 hrs./day, and I went home.

In my city, there is a place called Quality Living that is relatively nice. It prepares some individuals to live independently in the community, and others reside there permanently. Most residents are younger than those in nursing homes. There are nice facilities there for entertainment and recreation.

I think a majority of people the age of your sisters can live in the community with home health care and housekeeping services. Quadsis, if your sister is faced with losing her freedom maybe she will stop being so disagreeable. Otherwise it may be hard to find home health workers willing to put up with her. Maybe she could benefit from counseling. I suggest you both speak with an attorney who is familiar with Medicare/Medicaid and disability issues.

doublelibra

Edited by doublelibra, 18 June 2008 - 11:28 AM.

[allis53ca]

doublelibra went thru the same as i, at about same age and pretty much save me typing it...thanx dl....and this :" if your sister is faced with losing her freedom maybe she will stop being so disagreeable"....is almost verbatim what i was going to say...a few months in a nh will either kill ya or cure ure shittieness...

[Tired of hurting]

Sorry to hear about your sister...I feel sorry for your Mom, at 73 years old she needs to enjoy her life. It's not her responsibility. I have friends that are quads who live alone,with outside help. They are proud of their independence. Help her get placed with the help she needs. Social workers for the disabled. This is too much for young caregivers. The care becomes overwelming,and tiresome. I have a friend who has care for her daughter 14 years.She is exhausted and it's ruining there relationship, it's sad. Not to say what it has done to her back, from lifting her for so long.

[JaneNL]

Your situation does sound like a tough one. I care give for a woman who is a quadriplegic and I am constantly amazed at how well she does on her own. She hasn't always been as independent as she is now, but her mother who is also in her 70s decided that they both needed more space and bought a duplex. This has helped her greatly as now she "owns" her space yet is also able to access her mother's support when needed. This gives them both room to breath.. not sure if it's an option in your situation, but perhaps it will spark some ideas

[quadsis]

Thank you all for your replies. What a relief to hear from others who have been in the same boat.

We have had some developments on this front that just happened to come about unexpectedly. My sis is in the hospital w/pneumonia in all 5 lobes of her lungs. She was in ICU and intubated for a few days, but is now in a regular room and is to be discharged on Monday.

Here is where it gets interesting...sis' caseworker called my mom (who happens to be in Florida for a much needed vacation) and told her of the discharge date. Since my mom is out-of-town sis can't go back to the house! The caseworker told sis she will be going to a skilled nursing facility and sis AGREED! This makes a great segway for all of us. My youngest sister, mom and I are so relieved! We were fully expecting a scene of tears, screaming and foul words.

Medicare will pay 100% for 20 days and 80% for 80 more days. Medicaid will pick up the 20% for the last 80 days so we now have over 3 months to find permanent residence for sis.

I am so glad I found this website. You all have helped more than you could know.

Thank you so much!
Joan