Will & Mom

I was going through some things when considering writing on nursing homes and came across this picture. Willie was able to walk the stage with his peers last June - he'll get his diploma when he leaves in December. Mom was not able to go (this was about a month before she died); my in-laws were there. So we decided to get this picture so Will could have his graduation pictures with his grandparents. She was Ok this day and was so proud to see Will in his cap & gown.

Transition - Filing for SSI Part 2

Why can't things be easy....
Make sure you keep copies of everything....
Have personal information handy.....
Get a cup of coffee....

I had my next phone call with someone from the local Social Security Administration the other day to hopefully finish the SSI (Supplemental Security Income) filing. (See first SSI writing under the 'Transition' tab) Our original call was supposed to be on the day we had our blizzard (our office was closed) - I was able to get through to a regional office and a very nice woman gave me another appointment. When I had set the first appointment, the person I spoke to said she had my old information in the system but needed to send me paperwork to fill out and Will to sign (even if it was just an 'X') so they could get medical information from Will's doctors and needed a copy of his bank statement with copies of any receipts of money spent. I sent it back right away so they could have it in time for the call.

The call comes pretty much on time!! The woman starts talking and going over information that was originally there -- I told her that was all done online and the last woman said she saw it. This one tells me the information is only held for 6 months so there is no way it was there and we have to do it all over again!! OKAY!!! Also, I tell her about the paperwork and financials that are there. She can't find it - OKAY....... But finally decides it was probably in a folder for the original day of the call. YEA!!! There is was.

So we go over the banking information and income. Then on to the medical - doctor names and phone numbers, hospital stays, medicines. At least when I filed online last year, I printed out a copy of what I filed. So we were able to go through things fairly quickly. I needed to give some of my and my husband's personal information - social security number, birthdate, since we are guardians.

When all was said and done, the call lasted about 45 minutes. The woman said she would send me a copy of what we had done over the phone (she did - it arrived within a couple of days). She also mentioned it could take between 4-6 months before we had an answer - whether he was approved or not.

So now we wait. Just be ready for an extended process. You can also go to a SSA office - don't know if that would take the same amount of time or less. Maybe call an office first and ask which is better for you.

Adult Day Care Facilities.

(picture from 'eldercare' website)

There have been several new adult day care centers in the area. I know a few people who have had their parents attend the programs and they have been pleased and mom and/or dad loved it. I had mentioned it to my mom, figuring once she started feeling better, she could attend one a couple of times a week (we never got to that point). These centers can provide attendees therapies, socialization, activities, exercise, prepared meals. From what I understand, there are social workers there who can assess the adults to see what may be needed and come up with the best plan for them. Many of these centers now will also have programs for those elderly parents who have dementia or Alzheimer's.

You should always go to the facility to visit first; observe the staff, the cleanliness of the rooms, check the bathrooms, ask about their programs. Sometimes there is transportation provided. Ask about nursing care - are there nurses there during the day.

AARP's book "Staying at Home", mentions that you should check with your local agency on aging to check on a facility's licensing. I checked with our local Department of Elderly Affairs and they listed a variety of locations and there were numerous factors to look at. The same site referred to 'Eldercare Locator'. The link will lead you to locator where you put in some information and you find places in your area, hopefully matching your needs. Our local Elderly Affairs website cautions -- while the initial access is free, there may be a charge helping to find a place in your area, so please talk to someone.

Also, check with the facility about fees -- some may be free, some may be based on a sliding scale or full fee. Check to see if Medicaid will help. You have to qualify for Medicaid.

Adult day care services also provide respite for those family caregivers who need a break or let them continue to work.

A Couple of Good Websites For People With Disabilities.

I was checking around for sites to help disabled citizens with employment and found 2 organizations that help, not only with employment but one even with basic life issues. They deserve looking at if you need any information -- good places to start.

THE AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES: the areas they cover are employment, housing, health, interfaith, technology, international concerns, veterans, to name a few. "The American Association of People with Disabilities is the nation's largest disability rights organization. We promote equal opportunity, economic power, independent living, and political participation for people with disabilities. Our members, including people with disabilities and our family, friends, and supporters, represent a powerful force for change" is their mission. They even offer a discount healthcare benefits program. It has 3 levels covering pharmacy mail-order, durable supplies, dental, hearing aids, etc. This is called Medivest; click on the name and you can see what they cover.

The National Organization on Disability (NOD) is a private, non-profit organization that promotes the full participation of America’s 56 million people with disabilities in all aspects of life. Today, NOD focuses on increasing employment opportunities for the 79 percent of working-age Americans with disabilities who are not employed" is what they do. Their mission is 'to expand the participation and contribution of America’s 56 million men, women, and children with disabilities in all aspects of life. Our current focus is on improving employment prospects for America’s 33 million working-aged Americans with disabilities'. The organization 'researches, develops and demonstrates creative approaches to employment issues'. They work with the Wounded Warriors as well.

There is a lot of information on both these sites -- too much for me to try and dissect. I would suggest you take the time to look at them both to see if they can offer any help. The site mentions 2 program design projects to help disabled people get into the workplace: Bridges to Business is an ongoing collaboration with corporations across the nation to design effective approaches to recruiting, training, and retaining career-seekers with disabilities and Start on Success (SOS) is an innovative transition from school-to-work program, which gives high school students with disabilities workplace experience while educating employers about the benefits of hiring people with disabilities.

Practical Hints from "Aging Parents & Common Sense".

From the book 'Aging Parents & Common Sense' sponsored by The Equitable Foundation and Children of Aging Parents come practical hints in several areas that children will sometimes find themselves involved in as their parents age. Some may pertain to you, others may not; some are common sense, others may be 'why didn't I think of that?'. I am just offering a few to get you thinking.


*Give your elderly parents a gift of your time. Rather than 'things'. consider giving Dad an afternoon of golf (or whatever HE enjoys) for the 2 of you. Mom and you can have a spa weekend (or whatever SHE would like). Spend time working on projects of any type, for example - helping with financial paperwork, or painting the back fence. No agenda, just enjoy your time together. Mom used to like to go out for lunch -- wish I had done it more!!!
*The illness or death of a friend or relative may be the catalyst for a conversation with your parents about whether their personal affairs are in order. Many people find it useful to collect all personal and financial information in one master binder or file/folder. This can be divided into categories with copies of important papers that are kept elsewhere (possibly a safe deposit box) or any other materials that are useful to have on hand.
*Many newspapers, magazines, and books are published in large print - consider giving these as a gift.
*If you are in the position to help your parents financially, there are a variety of ways to do so. For example - take over some of their ongoing expenses, purchase a home where they can live rent free, give them an annuity, buy a long-term healthcare policy. I would suggest you speak with a financial planner, or accountant, or attorney familiar with these plans to see which may be the best way to go.
*If your parents decide to execute a durable power of attorney, one individual should be named with a second person as successor in case the first person is unable to serve. (Mom had 2 more after me. As we spoke to our attorney, he helped us to do this and we spoke to those involved as well.) It is generally useful to execute more than one copy of the Power of Attorney and provide certified copies to key people, such as the other individuals having the Power of Attorney and your parents doctors, bankers and anyone else you may need to contact. (The other 2 people named for mom had their own copies and I had about 5 copies to keep in case I needed them to hand out.) All the times I took mom to the ER, they asked for healthcare POAs. We had to bring them in each time, they could not keep and oblige by the old ones. Even the pharmacy had a copy so I could talk to the pharmacist.

Getting Ready for Transition.

Will's teacher and I were talking about being organized for the process we are now going through. With Will leaving school in December, I need to make sure I am considering all possibilities. There is so much information that comes out of seminars, it is hard to know what the next step is. So his teacher came out with a checklist, if you will, for those of us getting close. I asked her if I could share it and she said 'yes'.

Please understand this is nothing formal, just a checklist put together quick, things to consider. It does cover what steps come next. So for those families getting ready to enter the final stage of school, take a look at this and see if it helps.


Getting ready for Transition


1. How many hours a week will your child need services?


2. Where do you want your child during the week?
* One agency for 5 days
* 2 agencies (2 days at one, 3 days at another)
* Create your own services
* 1 agency and your own services

3. Where do you want them to be during the week?
* One location
* Out in the community
* Mix of being in the community and in the building

4. What do you want them doing during their week?
* What does your child want to do?
Work, Exercise, Recreation, Shopping,
Hobbies, Cooking, Take classes (read/ write/cook)
Music, Arts, Other: ____________

5. Transportation… Driving, Bus?
* Driver’s Ed… ORS* has a driver’s education assessment program
They will determine if they can be a safe driver.
* Riding public transportation… ORS* can provide travel training
* Separate bus for those with disabilities - Did you complete an application?
You can ask the agency to put the funding for this bus in the support agreement
* Family can transport

6. Go visit 3 or 4 agencies with your child, when they turn 20 - contact your local Support and Service agencies
(check with your ORS* office for names)

7. SSI: students can apply to SSI at age 18. Toll Free Number 1-866-964-2038

8. Call your local Developmental Disability office and ask for Intake (to make sure they have
all of the documents that they need to process the application).

9. ORS*:
* Your child can apply to see if they are eligible for a vocational evaluation.
* They can help you navigate paid employment & benefits.

10. Community Support & Parent: ask your child's teacher for name and number


*Office of Rehabilitative Services

Possible Options for Making a Safer Home: Part 1.

I AM OFFERING SOME OPTIONS THAT I FOUND IN A BOOK FROM 'AARP' (AMERICAN ASSOCIATION OF RETIRED PERSONS). THERE IS NO DATE ON IT, I COULD NOT FIND IT ON THEIR WEBSITE. THOUGH I FIND THE SUGGESTIONS WORTHWHILE (AND A CARPENTER DID DO SOME FOR MY MOM), I WILL ASK THAT, BEFORE DOING ANY OF THESE, YOU CHECK WITH YOUR LOCAL CARPENTER, HOME IMPROVEMENT BUSINESS, BUILDING INSPECTOR, OR ANYONE FAMILIAR WITH CURRENT REMODELING/BUILDING THAT WHATEVER YOU DO IS TO CODE. I WILL NOT GIVE DIMENSIONS OR HEIGHTS OR ANY SPECS -- I AM JUST PASSING ON SUGGESTIONS.

Another book I came across from AARP is called 'THE DO-ABLE RENEWABLE HOME - MAKING YOUR HOME FIT YOUR NEEDS'. They start out by stating that 'according to most gerontologists, personal happiness in later life is the direct result of an individual's continued physical activity and involvement in everyday life'. I think we can all find someone we know, an elderly person, who wants to stay in his/her home for as long as possible, being independent. There may be things we can do in our home or parent's home to make things easier. If you or your parent lives in an apartment, there MAY (check with the landlord or your local housing agency) be a way to make changes, as long as you change them BACK to the way they were when moving out. I also think that many of these options also work with any disabled person, regardless of age.

Some people have mobility issues, some experience vision loss, others hearing loss. This first part will just go over some basic ideas to make things easier at home. I will get into detail at another time (have to read the book more!!). Most of these are pretty self-explanatory and evident.

* for those with mobility issues - relocate bedrooms or living spaces onto the same level; establish convenient storage areas; remove hazards on paths between commonly used rooms; store frequently used household items where they can be retrieved with a minimum of bending, reaching, lifting, & carrying; limit times going up & down the stairs.
* for those with vision issues - clearly mark (with white or reflecting tape) hazardous changes in floor levels; position furniture away from areas where you walk or move around most often; adjust illumination throughout the house by using higher wattage bulbs & distribute light evenly, avoid shiny surfaces to minimize glare; check the home's color scheme - yellows, oranges & reds are more easily distinguished; avoid using closely related colors together - use contrast colors between doorways & walls, dishes & tablecloths, the risers & flat surfaces of steps; keep a consistent light level in bedrooms & bathrooms, & use nightlights.
* for those with hearing issues - for easier communication be in a quiet corner of a room or in a side room away from a group; position yourself so you can hear easier; carpet the floors and put curtains in the windows to reduce noise & echoes; purchase devices such as hearing aids, vibrating alarm clocks, amplified TV sets, flashing lights to announce information & warnings; ask your local telephone company for amplified headsets, signal devices, TTYs, & extension bells.

Sometimes with all the above comes frailty, disorientation, & dizziness;
*use furnishings that are stable & without sharp corners to minimize the effects of a fall; remove scatter rugs, sharp objects & clutter BUT keep the layout of the familiar furniture & pathways the same; place barriers at dangerous locations to prevent unstable or disoriented people from falling down stairs or entering unfamiliar rooms where hazards may be present.

Just remember: places have to be ACCESSIBLE & to make them so, they must be made ADAPTABLE. Since 1992, the Americans with Disabilities Act has made many public places accessible, most important being an accessible route to travel (this would include home corridors too connecting important areas). This as well as other parts of the home can be ADAPTED to fit the person's needs by making adjustments. Adjustments to sinks, baths, doors, etc.

The book goes into these adjustments -- will be discussed in another post.

Areas of Concern for Elderly Parents or Any Senior.

I found a book that my mother had for awhile. Apparently, I didn't know she had it or else I would have had it out as a resource. I cannot find a printing date on it, though the information seems applicable. It is "AGING PARENTS AND COMMON SENSE - A PRACTICAL GUIDE FOR YOU AND YOUR PARENT". It was put together through the Equitable Foundation Inc (the philanthropic part of The Equitable Life Assurance Society of the United States) and Children of Aging Parents or CAPS. I could not really find much information from The Equitable website & the CAPS website had some info, the last newsletter was from 2008 so I called the phone number to see if they were still around -- they are. The book covers a variety of issues - talking to your parents, where will they live, legal issues, taking care of yourself as a caregiver, etc.

(picture from CAPS website)

One thing that the book covers, reminded me of my visits to the ER with mom. During the initial in-take of information, the nurses and doctors always asked her if anyone was abusing her either physically or emotionally. If she went home the same day, would she be scared to be with someone at home? Which brings us to the problem of elder abuse, which is as it sounds - mistreating an elderly person. This book defines it as: 'assault, threats of assault, verbal abuse, financial exploitation, physical and/or emotional neglect, or sexual abuse' and says usually the abuse from the caretaker rises as the older person's condition worsens. Usually it is unreported due to the elderly parent/person being ashamed, unable to say anything, or fearful that the abuse may get worse if it is reported.

The book reports that The National Center on Elder Abuse lists some indications of abuse as (the website has a some of these):
* burns, bruises or cuts
* dehydration, or malnourished appearance
* anxiety, confusion, withdrawal
* expression of shame, embarrassment or fear
* poor personal hygiene
* over-medication or over-sedation
* sudden bank account withdrawals or closing

If you see anything like this with someone, please contact your local social service agency.

___________________

From caretaker abuse to self-abuse:

Alcohol abuse is seen sometimes as old-age complaints -- it can show itself as tremors, gastritis, confusion, hypertension, depression. The book goes on to describe other indicators as:

* burns on hands and extremities from cooking
* evidence of repeated falls
* other unexplained accidents
* fear or avoidance of doctors and dentists
* paranoid behavior
* mood swings
* malnutrition
* preference for isolation, secretiveness
* inability to remember particular periods of time (blackouts)

(picture from TCSAP website)

The book identifies The Center for Substance Abuse Prevention as mentioning the following 'cautions': (I tried to find these on the website but there were so many different reports that this may be a compilation of them)

* age-related stress such as bereavement, unemployment, a move to a new place; keep in mind with aging comes a change in metabolism so they are more susceptible to alcohol's affects
* there can be an interaction between alcohol and both prescription and over-the-counter medication; have a frank talk with the doctor and/or pharmacist.
* try to lesson the loneliness, isolation and depression - keep them involved in family, spiritual, and community affairs; it may be possible for them to volunteer in some programs to increase their self-worth and self-esteem. My mom belonged to a senior group that met every week and had day trips; she was still pretty good in speaking Portuguese so a pre-school teacher I know had her come in her class to work with a student new to the area who spoke no English, to help translate and learn English. They formed a great bond and 'Miss Lucy' always looked forward to going to be with the kids.

Alcoholism can be beat but you probably need outside help. Talk to his/her doctor for the best treatment.

______________________________________

Depression is big among the elderly. Aging is usually not the cause but ailments of the elderly can be. These could be:

*chronic pain, disability, dependence, isolation, fear
* some medications like steroids and meds for the treatment of hypertension, heart disease, diabetes
* loss of peers or loved ones which may cause a long mourning time
* keeping any fear and /or negative feelings inside.

This too can be treated with their doctor's help. There may be a good counselling service nearby or maybe your parent can speak with their spiritual leader. Sometimes just time helps. Either way - best to get to the bottom of things before conditions worsen.

Tech Items for Seniors to Help Independent Living.

I caught some of the 'Today Show' this morning and they had a gentleman on who writes for 'Senior Savvy', a site which provides a variety of information for older adults. He was showing some items that may help us children feel better about having our elderly parents stay independent longer. You can watch the video on the above 'Today Show' link or go to the 'Senior Savvy' link to read the article.

Either way:

* there are a couple of in-home alert devices - pendant/telephone systems (great system - mom had one and worked wonderfully),
* a mobile system that works anywhere (has a GPS in the mechanism so when someone wearing it has an issue, after pushing the button the operator can track the person's position to send help),
* a system which monitors the everyday lifestyle pattern of the person (no cameras) and sends reminders if that person forgets to do something one day, like take medication or eat - the system can notify a caretaker,

* a senior-friendly touch-screen computer to help the older person set up reminders, receive messages and photos, etc,
* medication management pill dispenser which lights up the section of the pills that are to be taken and sends reminders and beeps if forgotten (wish I knew about this one for mom),
* a basic pair of walking shoes with a GPS locator in them - you set up a parameter and when the person walks outside of it, it notifies the caretaker via email or text with the exact location of the person,
* a lightweight walking cane that pivots on a 3 point base for better stability (again - wish I knew about this one).

(all pictures from 'senior savyy' website)



Definitely a site to check out - there are plenty of items and a variety of links to explore.

Looking for Ways to be Healthier and Reduce Dementia Risk?

(picture from 'A Place for Mom' website)

As we all know, dementia & Alzheimer's are diseases that we cannot control. The medical community has been pushing for ALL of us to eat better and smarter to try and avoid MANY types of diseases. So following their recommendations, which I grant changes often sometimes, we could all live healthier lives. So doctors, of course, suggest that our elderly parents eat better (look at any specific diet based on a medical condition - that too can be made better tasting) which will not only help them in general but could help reduce getting a memory loss condition.

Six ways to reduce your dementia risk:
*Live a heart healthy lifestyle - basically it means to exercise regularly, no smoking, eat a heart healthy diet (low fat, low sugar, lots of veggies).
*Use your brain - some researchers feel those with higher educational levels are less apt to get dementia or Alzheimer's. Their 'cognitive reserves' help to beat these diseases. I think a lot of studies have shown that those who stay mentally active can help keep their minds fresh.
*Protect your head - serious head trauma and loss of consciousness can aid in the future risk of Alzheimer's. Wear your seat belt, a bike helmet, and make sure homes are safe for those who may have eye or mobility problems.
*Moderate your alcohol use - the study says it found that in 2008, many dementia cases stem from alcohol abuse. It also reports that if you drink red wine for cardiovascular reasons, now it seems non-alcoholic red wine is the better way to go.
*Reduce stress and spend more time with friends - the Alzheimer's Association says it is not quite sure why an active social life and mental stimulation seems to protect the brain but it does. The active social life also helps longevity, happiness and good health.
*Get enough sleep - 'A September 2012 study found strong evidence indicating that the sleep-wake cycle helps to clear the brain of the amyloid plaques that are thought to cause Alzheimer’s, and another study from October 2012 found that healthy adults who report trouble sleeping have an increased risk of developing Alzheimer’s in the future. Research on sleep and memory that was published only a few days ago in the journal Nature Neuroscience seems to further affirm that when older people sleep poorly it can prevent them from “storing” memories and lead to dementia symptoms.' Strong words - something to think about. Just remember - you have to remember to think about it!!! Which is why we should all be doing the above.

Testing for Alzheimer's.

'A Place for Mom' had an article reviewing information on Alzheimer's testing. This disease is similar to other mental diseases and in the past, it was only through posthumous examination. Now when seeing the signs of Alzheimer's, there may be some testing available to help diagnose.

Standard testing is: 1) physical and neurological - check blood & urine; see how the patient walks; check vision, hearing, reflexes, and balance. 2) cognitive - solving simple problems & also looking at short and long term memory testing. 3) neuropsychological - time intensive testing of memory and thinking done by a psychiatrist or psychologist.

(picture from 'A Place for Mom' website)



There are new tests, identifying biomarkers, that maybe coming out which could help detect the disease early on. So scientists are working on: 1) brain imaging to look for changes - MRI, CT, PET; 2) cerebralspinal fluid protein levels - this is still being researched but it would only require a spinal tap; 3) check for proteins in the blood - looking for biomarkers in blood, urine, & the eye lens; 4) genetic markers - even though many markers have been identified, this is still mostly for research yet.

As much as everyone wants to run out and get mom/dad tested, many of these tests are NOT covered by insurance and are costly. The article mentions that genetic testing has its own risks and then the findings may affect insurance eligibility.

My mom went to a local Memory & Aging Clinic at a hospital that deals with many mental diseases. She went through a battery of mental testing while I filled out a large questionnaire. The findings at the time were good - she was 80 and her 'forgetfulness' was normal. But she did return a few times for check-ups. In my opinion, it is great to sit down with a doctor who is specialized with this type of mental disease, best to know 'yes' or 'no' rather than be guessing. Feel free to check previous post - "Delirium or Something Else".