Grant Help Needed To Buy Safe Home For Disabled Terminally Ill Mother
by Catherine Robert
(Shrewsbury, MA, USA)
My name is Catherine Robert. I live in Shrewsbury, MA. I am a 46-year-old mother of three children.
I have a daughter who is 23 years old, a daughter who is 13 years old and a son who is 4 years old.
I've been married to my husband, Andrew, for 14 years.
My mother, Connie, came to live with us in February 2010, after finding it almost impossible to get a diagnosis for her difficulty walking, talking and falling down several times from doctors down in North Carolina.
I stay at home to care for our children and now my mother, as well as my husband, who just had a stem cell transplant this past July 2011, to hopefully cure myelodysplastic syndrome, a blood disorder where the bone marrow slowly stops making healthy blood cells.
My mother, when she came to visit prior to moving in with us, had a very difficult time sitting down. It seemed like it would take minutes for her brain to tell her knees to bend so that she could sit.
She had trouble talking in that it seemed that what she wanted to say was on the tip of her tongue but she couldn't get it out. Her voice also became softer, her writing smaller and slightly messier. She's become forgetful and has a tendency to fall down, thankfully without any serious injury.
I arranged for her to see my primary doctor in December 2009. Through blood tests and observation, she felt it was neurological and referred her to a neurologist at UMass Memorial in the neurology clinic.
Because she had to go back to North Carolina to arrange to move in with my family, we were able to get her in to be evaluated in early January 2010.
That doctor believed that she had early stages of Parkinson's disease. She was prescribed carbidopa/levodopa.
She went home and by the time she came up with her things at the end of February 2010, she seemed so much better… moving and talking with a lot more ease.
However, as time went on, it seemed that the medicine would slowly stop working.
She'd see her doctor at the clinic and he'd increase her dosage. She'd feel better for a few months and then start to feel the stiffness/slowness again.
We started losing faith in this doctor because he didn't communicate very well. My mother chose not to see him again after that summer. That seems to be when things just started happening.
Our landlord of the house we were renting at that time needed the house back for family. On Sept 1, 2010, we moved to another rental house.
The week before moving day we came to this house that we live in now to move smaller things here. It's a two-level house with three bedrooms on the second floor.
My mother was climbing the stairs, tripped and fell into the corner of the bedroom door.
She had a two-inch gash on her forehead and she wrenched her left arm because when she fell she was holding onto the railing and held onto it as she fell.
A trip to the emergency room showed it was minor, thankfully. A few weeks later, she fell again, getting up out of the chair in her bedroom. Again, she escaped serious injury.
Around Thanksgiving she started having pain around her upper right side. The Tuesday evening before the holiday, we called the ambulance to take her to the closest emergency room.
At first we thought the pain was a heart attack. She was later sent home with medication for a bladder infection. By the following Monday, she was still in pain and glowingly jaundiced.
We went to her primary doctor who sent her to a different ER; later that night she was admitted to the hospital for severe infection of the liver and gallbladder due to a marble sized gallstone that was lodged in the bile duct.
She was hospitalized for just over two weeks to fight the infection and to remove the stone. After her release, she had to go and get I.V. antibiotics, on a daily basis, to continue to fight off the infection.
Two or three weeks later, she was able to go to oral antibiotics. She was scheduled to have her gallbladder removed at the end of March 2011.
In February, as we were leaving a restaurant, she tripped over uneven pavement on the sidewalk, falling into a brick planter. An ambulance was called.
She had a split lip, abrasions on her knees and her hands. Later on, it was found that she broke her left wrist bone.
At one point, visiting her primary doctor we'd asked to be referred to a new neurologist.
This doctor, whom she saw in March of 2011, also said she had Parkinson's, not really changing anything except to address my mother's issue of not being able to sleep.
We were not impressed with this doctor so we went back to the UMass clinic, this time seeing a resident.
(By the way, she did have her gallbladder out in March, and she also fell a couple of times more, once in the playground by our house and a couple of times climbing up the stairs while I was at the hospital visiting my husband in July.)
Her visit to the new doctor was in August 2011. This time we were told that she in fact has progressive supranuclear palsy. A brain scan shows deterioration of the deep mid-brain.
There is no cure and even though Parkinson type drugs can help, eventually they stop all together.
Right now my mother is in Florida with her sister who lives there. The cold here makes her body ache.
She was originally going to fly down to Florida on December 14, but the evening before her flight she fell out of her chair again, this time, falling into the heat register, gashing the scalp on the top right side of her head, three inches long and deep enough to need 6 or 7 staples.
She was able to fly down to Florida two weeks later after having her staples taken out. When she travels by plane she needs someone to take her in a wheelchair to get from one end to the other end of an airport as well as to use the gantry on and off the plane.
She is scheduled to fly home at the end of March, days shy of our second opinion appointment with a neurologist from Mass General in Boston. From what she and her sister have told me, her symptoms are getting worse and more difficult to deal with.
Our need for help is related to her safety and to our ability to buy a house. The safety issue is the stairs. My biggest fear is of her losing her balance and falling down them as well as pulling someone down the stairs with her should they be assisting her.
We can put her bed in our dining room, but she'd still need to go upstairs to bathe in a tub where she could easily slip out of or into. It would be safer if we had a walk-in shower.
The other issue we have is that our landlord, who currently resides in India, is planning on returning to the U.S. but at this time he doesn't know when.
As of March 1, 2012 our lease goes month to month. We will need to move within 60 days of notice.
We could rent but again our biggest issue is safety for my mother. We'd need to find a rent within our budget and a big enough home within that budget.
Right now we pay $1300 a month. Homes available for rent are either too small, don't have the room downstairs we need/safe bathroom or are too expensive.
As a side note my husband and I had no choice but to file 100% Chapter 13 bankruptcy. Our filing was January 2008. We plan on paying off the judgment by the end of April 2012.
The biggest issue will be getting approved for a mortgage with the bankruptcy on our credit and finding the money to put for a down payment and making modifications for the bathroom at the very least.
There are plenty of homes on the market that have downstairs rooms that are or can be used as a bedroom or are one level.
Once the judgment is paid and the bankruptcy is discharged, we will be able afford as much as $2000 a month on a mortgage.
As another note, my mother cannot drive. Her vision, coordination and reflexes are too poor to allow this. I am her ride wherever she needs to go.
As a stay-at-home mother, I don't earn a wage. My husband nets about $127,000 a year. Sounds like a lot, but we are a household of six.
My mother has a small pension that I'm not sure if it's run out and she also gets social security. She has Medicaid and supplemental insurance to cover medications I believe.
Most of her income goes to paying for our vehicle. She took out the auto loan because we couldn't with our bad credit. The money she pays toward the auto loan is in place of room and board.
She also has a credit card and she is now paying for the many medical bills that Medicaid didn't pay.
My oldest daughter is unemployed at this time.
My working is not feasible; even so, my work skills are severely outdated anyway.
We need money to help us quickly buy a house that'll be safe for my mother and that's big enough for all of us.
We would appreciate any information and/or advice on how to obtain a grant to make a down payment, cover closing costs and make the home safer, etc. Thank you.