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Posts Tagged ‘Alzheimers’
Welcome to My World – A Caregiver’s Frustration
Since we’ve been receiving hospice care, a nurse visits our home twice a week and we really appreciate those visits. Because of her declining mental and physical abilities, Gladys’ care is becoming increasingly frustrating. For the past few days, it has been very difficult for Gladys to stand up and walk. In fact, we don’t even take her to the bathroom anymore, we just try to get her to take the few steps to the bedside commode.
This past Monday our home health aid and the nurse arrived about the same time. They were surprised that it took both of them to get Gladys out of her chair and stand her up to her walker. Of course Gladys told the nurse that she felt fine and everything was going well. They looked at me, surprised at the effort that it took for both of them to help her up. I just looked at them and said “Welcome to My World.”
More change is in store because my husband, Fred, starts working next week. It will be an adjustment because he helps me a lot with Gladys. I have added another day for our sitter, so that will be some relief and allow me to run errands and do other things I need to do.
All we can do is take it one day at a time and do the best we can. It gets a little frustrating but so far we’re managing.
The Car, The Key, The Brain and Dementia
About two weeks ago, my husband and I were leaving church but his car key wouldn’t unlock the door. Thinking his key battery was dead, I tried my key and it wouldn’t unlock the door either. After a few minutes, it finally worked. Thinking it was a fluke, we forgot about it until a few days later, the car wouldn’t start. I called my mechanic who told me that after about six years, the car can begin to forget the key. My car is 10 years old, so supposedly it is overdue.
I put an update on my Facebook page that said:
My car and key have become estranged. The car doesn’t recognize the key – gotta order new ones so I’ll be out of commission for a while until new key arrives. Almost got stranded at Walgreens yesterday when the car would not start.
What I wanted to say is – my car has Alzheimer’s; but Facebook isn’t the place to put a politically incorrect statement without an appropriate explanation.
I looked at the key to my car and thought about how it reminded me of the brain and dementia. They key has two batteries in it that power locking and unlocking the doors and the trunk. But it also has a little computer chip in it that is kind of the brains of the car that tells the key which doors and trunks to unlock. In addition to starting the car, the key aids in programing driver preferences. For instance, when I start the car with my key after my husband has used the car; it also adjusts the seat, lumbar support, side view mirror and steering wheel position to my preferences. My husbands key does the same.
To rectify this problem, we had to take the keys back to the dealership. They ordered the keys from Houston to be programmed based on the VIN number for the car. Of course, I’ll have to reset my preferences, but when I get my keys back, they should recognize my car so it will do what it is supposed to do. Right now I am waiting for the dealership to send me new keys.
Wouldn’t it be wonderful if our brains could be re-programmed like car keys. What if someplace there was a blueprint of our brains that could be reprogrammed when parts of our brains forget what they are supposed to do? Wouldn’t it be great if it was just that simple?
Note: My new key came in after I finished this post. We had to let it sit in the ignition for about an hour to download information from the car. Amazing!
Don’t you think it would be great if we could do this with people?
Proposed Changes to Georgia Personal Care Home Rules and Regulations
This information was forwarded from the Georgia Advocacy Team (part of Alzheimer’s Association – www.alz.org). If you love in Georgia, please respond.
Proposed Changes to Personal Care Home Administrative Rules and Regulations–In July, a person with Alzheimer’s disease wandered away from the personal care home where she lived in Augusta, and after two days of searching, was found deceased. The Association Vice President for Programs, Services and Public Policy Ginny Helms notified the State that this death reflects the fact that the Personal Care Home regulations do not have provisions ensuring the safety of persons with dementia.
Ginny was invited to discuss the regulations with the Healthcare Facility Regulations Division Chief, Doug Colburn. He and his staff made changes to the administrative rules and regulations that will better protect persons with dementia. The Board of Community Health is holding a public hearing on the proposed regulations on Wednesday, October 21st. We are asking that you write a letter in support of these new regulations and mail or e-mail it to the Board of Health. The deadline for the postmark on the letter, or for their receipt of your e-mail is 5:00 p.m., Thursday, October 22.
To e-mail comments: wmcgaha@dch.ga.gov
To mail comments:
Members of the Board of Community Health
c/o General Counsel Division
2 Peachtree St, NW
Atlanta, GA 30303-3159
Key talking points include
- I am concerned that current administrative rules and regulations for personal care homes do not have provisions to ensure the safety of persons with dementia.
- Nearly 70% of persons with Alzheimer’s disease wander.
- Of those who wander, if they are not found within 24 hours, up to 50% risk serious injury or death.
- Existing regulations do not adequately address the risk of wandering and leave residents with cognitive impairment at risk for harm or death.
- I believe that Requirements for Memory Care Services set forth in Section 111-8-62-19 of the Ga. Admin. Comp. Ch. 111-8-62, Personal Care Homes (new) proposed rules and regulations address the concern about lack of safety provisions in personal care homes and the risk of residents wandering from personal care homes.
- I appreciate the Healthcare Facility Regulation Division’s response to the concern expressed by the Alzheimer’s Association, GA Chapter, in developing these rules to help ensure the safety and well-being of persons with Alzheimer’s disease and other forms of cognitive impairment. I appreciate the Board of Health’s supporting these changes to the administrative rules and regulations.
If you do send an e-mail or letter, please e-mail us and let us know!
Coordinating Council for Human Services Transportation (SB22)—Please contact the Georgia Department of Transportation (GDOT) Board Members in your area and ask them to approve the inclusion of Coordinating Council for Human Services Transportation (SB22) as part of their 2010 GDOT Agenda for action this upcoming Session. Please visit the GDOT website for a complete list of Board Members, district maps, meeting agendas, etc. Their website is: http://www.dot.state.ga.us/Board/Pages/BoardAgenda.aspx.
This would benefit individuals with Alzheimer’s, especially those newly diagnosed who may be beginning to have difficulty with driving and are worried about loss of independence when they lose their ability to drive—especially if their caregiver is a spouse or other individual who does not drive—this will provide another transportation option for them. This will also help to minimize costly duplication of routes and beginning and ending points as various human services agencies pass each other picking up passengers and transporting them often to some of the same facilities—doctor’s offices, banks, grocery stores, dialysis, etc.
If you do send an e-mail, please e-mail us and let us know!
Thank you for taking the action—one voice can make a difference—your VOICE does make a difference to individuals with Alzheimer’s disease and their families!
