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One of my best friends cared for her younger sister with Downs. Her sister lived to be in her 50’s. She did develop dementia.
This woman was extremely high functioning when she was younger. She participated in Special Olympics and was a good swimmer. She attended St. Michael’s school for special needs kids and did well. She socialized well with others.
After she got diagnosed with dementia she stopped speaking and walking. She refused to walk and was in a wheelchair until she died. She no longer fed herself and became very thin. My friend would spoon feed her a few bites here and there. She never ate complete meals like she did before having dementia.
I suggested that my friend place her in a group home or a facility but she couldn’t bring herself to do that. She ended up quitting her job to care for her sister because her sister couldn’t be left alone. She was paid very little as a caregiver by the state.
Every once in a while her sister would become aggressive. She wouldn’t cooperate with normal activities such as bathing. They started giving her sponge baths in her bed.
My friend was burning out and I begged her to reach out for help. She contacted ARC and received helpers. Eventually her sister went on hospice and she had help from volunteers and the hospice staff. Occasionally, I would stay with her sister so my friend could get out of the house for a while.
The only thing that her sister seemed to enjoy was watching Family Feud. Sometimes, she would busy herself with her blanket that had gadgets attached to it. Sorry, I can’t remember what those blankets are called. I think my friend referred to it as her fidget blanket.
Sadly, my friend was having a difficult time with losing her sister and the hospice nurse had to tell her that she needed to prepare for her sister dying.
My friend never left her side. The night that her sister died she called me just to talk. We were speaking about different things and my friend asked me to hold on for a minute. She came back to the phone and said that her sister had died. I was sad for her and relieved for her at the same time.
My friend is back at work and misses her sister terribly. She is the first born. Her sister was the baby. She was always a mother hen to her sister in her large Italian Catholic household.
Do you have ARC or Easter Seals in your community? Do you have group homes in your area?
Wishing you peace during this difficult journey. I watched my friend take care of her sister after her parents died. It’s very challenging.
Get in contact with your state’s Dshs and dda programs (developmental disabilities). She should be or have been covered under these agencies for many years. You should have or will be assigned a caseworker who assesses the person’s needs and abilities and should be able to help you.
JamieM63: Source - NIH - "Alzheimer's Disease in People With Down Syndrome Many but not all people with Down syndrome develop Alzheimer’s disease when they get older.
People with Down syndrome are born with an extra copy of chromosome 21, which carries a gene that produces a specific protein called amyloid precursor protein (APP). Too much APP protein leads to a buildup of protein clumps called beta-amyloid plaques in the brain. The presence of beta-amyloid plaques is one of the hallmarks of Alzheimer's disease. By age 40, most people with Down syndrome have these plaques, along with other protein deposits, called tau tangles, which cause problems with how brain cells function and increase the risk of developing Alzheimer’s symptoms. Estimates suggest that 50% or more of people with Down syndrome will develop dementia due to Alzheimer’s disease as they age. This type of Alzheimer’s in people with Down syndrome is not passed down genetically from a parent to a child. Down Syndrome and Alzheimer's Research Scientists are working hard to understand why some people with Down syndrome develop dementia while others do not. They want to know how Alzheimer’s disease begins and progresses so they can develop drugs or other treatments that can stop, delay, or even prevent the disease process. They are also hopeful that research on Alzheimer's and Down syndrome will not only help those with both conditions, but also may lead to effective treatments for all people with Alzheimer's. Research in this area includes:
Basic studies to improve understanding of the genetic and biological causes of brain abnormalities that lead to Alzheimer’s Observational research to measure cognitive changes in people over time Studies of biomarkers (biological signs of disease), brain scans, and other tests that may help diagnose Alzheimer’s — even before symptoms appear — and show brain changes as people with Down syndrome age Clinical trials to test treatments for dementia in adults with Down syndrome."
Someone with a diagnosis of dementia should not be driving. Whether they were capable of driving before dementia, having a form of Downs syndrome mile enough that they were perfectly capable of driving and passing DMV testing isn't now relevant.
The problem with disabled children like this, there is no place for them. They need group homes and there just aren't any. So family ends up caring for them and not always using all the resourses needed. Parents just think the other children will care for them when they are gone. With any problem with the brain, Dementia sets in. She may not be lying, thats just what her brain is telling her.
I would start with your County Disabilities Dept. See what is available to her. Maybe an Adult Care. With DS there are so many levels of ability.
” I am the sister of the person with DS and she is declining mentally. We lost our mother 2 1/2 yrs ago. That seems to be what started her decline ( just an assumption). I am married and we live on 10 acres of beautiful hill country. My husband still works and so I am here full time with my sister. What I am trying to accomplish is to understand her more. She has big time issues with lying and therefore it's frustrating. Any info for both of us would help tremendously.”
I would be astonished if there is not a support site for information about Downs and for accommodation and care support options. That would clearly be the best place to start for information. Your sister should have been in touch with Downs support groups for her entire life. Have you tried these options? If not, why not?
It would be good to amend your profile to mention Downs.
You have a "double whammy" on your hands. Unfortunately this is becoming more common. DS babies 50 years ago were not expected to live to adulthood. People diagnosed with DS are more likely to be diagnosed with a dementia. Sobering statistic: 30% of people with DS who are in their 50's have Alzheimer's and about 50% of people with DS in their 60's have Alzheimer's
A few things that you may already know. 1) You need help 2.) If there are Adult Day Programs that would be appropriate look into them. It will give your sister a break and it will give you a break.
Contact the Alzheimer's Association 1-800-272-3900 Contact the National Down Syndrome Society 1-800-221-4602 See if there are programs in your area that will help.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
This woman was extremely high functioning when she was younger. She participated in Special Olympics and was a good swimmer. She attended St. Michael’s school for special needs kids and did well. She socialized well with others.
After she got diagnosed with dementia she stopped speaking and walking. She refused to walk and was in a wheelchair until she died. She no longer fed herself and became very thin. My friend would spoon feed her a few bites here and there. She never ate complete meals like she did before having dementia.
I suggested that my friend place her in a group home or a facility but she couldn’t bring herself to do that. She ended up quitting her job to care for her sister because her sister couldn’t be left alone. She was paid very little as a caregiver by the state.
Every once in a while her sister would become aggressive. She wouldn’t cooperate with normal activities such as bathing. They started giving her sponge baths in her bed.
My friend was burning out and I begged her to reach out for help. She contacted ARC and received helpers. Eventually her sister went on hospice and she had help from volunteers and the hospice staff. Occasionally, I would stay with her sister so my friend could get out of the house for a while.
The only thing that her sister seemed to enjoy was watching Family Feud. Sometimes, she would busy herself with her blanket that had gadgets attached to it. Sorry, I can’t remember what those blankets are called. I think my friend referred to it as her fidget blanket.
Sadly, my friend was having a difficult time with losing her sister and the hospice nurse had to tell her that she needed to prepare for her sister dying.
My friend never left her side. The night that her sister died she called me just to talk. We were speaking about different things and my friend asked me to hold on for a minute. She came back to the phone and said that her sister had died. I was sad for her and relieved for her at the same time.
My friend is back at work and misses her sister terribly. She is the first born. Her sister was the baby. She was always a mother hen to her sister in her large Italian Catholic household.
Do you have ARC or Easter Seals in your community? Do you have group homes in your area?
Wishing you peace during this difficult journey. I watched my friend take care of her sister after her parents died. It’s very challenging.
"Alzheimer's Disease in People With Down Syndrome
Many but not all people with Down syndrome develop Alzheimer’s disease when they get older.
People with Down syndrome are born with an extra copy of chromosome 21, which carries a gene that produces a specific protein called amyloid precursor protein (APP). Too much APP protein leads to a buildup of protein clumps called beta-amyloid plaques in the brain. The presence of beta-amyloid plaques is one of the hallmarks of Alzheimer's disease.
By age 40, most people with Down syndrome have these plaques, along with other protein deposits, called tau tangles, which cause problems with how brain cells function and increase the risk of developing Alzheimer’s symptoms. Estimates suggest that 50% or more of people with Down syndrome will develop dementia due to Alzheimer’s disease as they age.
This type of Alzheimer’s in people with Down syndrome is not passed down genetically from a parent to a child.
Down Syndrome and Alzheimer's Research
Scientists are working hard to understand why some people with Down syndrome develop dementia while others do not. They want to know how Alzheimer’s disease begins and progresses so they can develop drugs or other treatments that can stop, delay, or even prevent the disease process. They are also hopeful that research on Alzheimer's and Down syndrome will not only help those with both conditions, but also may lead to effective treatments for all people with Alzheimer's. Research in this area includes:
Basic studies to improve understanding of the genetic and biological causes of brain abnormalities that lead to Alzheimer’s
Observational research to measure cognitive changes in people over time
Studies of biomarkers (biological signs of disease), brain scans, and other tests that may help diagnose Alzheimer’s — even before symptoms appear — and show brain changes as people with Down syndrome age
Clinical trials to test treatments for dementia in adults with Down syndrome."
Whether they were capable of driving before dementia, having a form of Downs syndrome mile enough that they were perfectly capable of driving and passing DMV testing isn't now relevant.
I would start with your County Disabilities Dept. See what is available to her. Maybe an Adult Care. With DS there are so many levels of ability.
” I am the sister of the person with DS and she is declining mentally. We lost our mother 2 1/2 yrs ago. That seems to be what started her decline ( just an assumption).
I am married and we live on 10 acres of beautiful hill country. My husband still works and so I am here full time with my sister. What I am trying to accomplish is to understand her more. She has big time issues with lying and therefore it's frustrating. Any info for both of us would help tremendously.”
get her tested for a UTI first.
It would be good to amend your profile to mention Downs.
Unfortunately this is becoming more common.
DS babies 50 years ago were not expected to live to adulthood.
People diagnosed with DS are more likely to be diagnosed with a dementia.
Sobering statistic:
30% of people with DS who are in their 50's have Alzheimer's and about 50% of people with DS in their 60's have Alzheimer's
A few things that you may already know.
1) You need help
2.) If there are Adult Day Programs that would be appropriate look into them. It will give your sister a break and it will give you a break.
Contact the Alzheimer's Association 1-800-272-3900
Contact the National Down Syndrome Society 1-800-221-4602
See if there are programs in your area that will help.