I've been reading about that "sandwich generation" of people, usually women, who both have their own children and are taking care of their aging parents. My "baby" sister, who has a daughter who just turned 17 late last year, is in that situation vis a vis my mother. I've been down to help, my wife has, my other sister has twice in 2007, but I'm sure it's not the same as dealing with the every day stuff.. My mom's 81, and in reasonably good health, though she takes enough pills that, instead of using those containers that separate one's daily doses, it separates the morning pills from the afternoon from the evening on a weekly basis.
From the Census: "The 65 and older age group is projected to increase to 88.5 million in 2050, more than doubling the number in 2008 (38.7 million). The 85 and older population is expected to more than triple, from 5.4 million to 19 million between 2008 and 2050."
One of the things the younger sister came across is this from various sources, which I'm posting on Grandparents' Day:
Likely the best thing a caregiver can do for their loved one is to take care of themselves.
Caregivers tend to put their own needs on the back burner - - - but if you're not healthy, you can not provide assistance to another.
- When did you last have a medical check-up?
- When did you last engage in a fun, favorite activity?
- When did you last get together with friends or family for some fun?
- When did you last sleep all night?
It's okay and important to take care of yourself!
Research indicates that 46% - 59% of caregivers are clinically depressed. When did you last talk about your feelings with someone?
Pay attention to . . .eating right, getting enough sleep and exercising some!
Check out . . . the Caregiver Stress test.
Is There Some Equipment That Will Help?
"Having the right equipment can make caregiving tasks simpler, faster and more efficient. Discuss needs with your doctor. Ask for a physical or occupational therapy evaluation. Contact agencies from the phone book under Hospital Equipment and Supplies or under Medical Equipment and Supplies."
Where Can I Find Some Support?
"I'd just like to know I'm not in the boat by myself! Support groups, training and counseling may be the answer. Groups meet at various times in different locations all over the country. They are all different - - - one size does not fit all!"
Two quick hints:
1. Have a job jar and when the well-intentioned friend or family member says, "Let me know what I can do to help." Have the suggestions ready!
2. Tell the family - "The doctor wants Mom to have X,Y, and Z. I can do Y and Z. Who can do X?
Transportation, Food and Finances Are Real Problems
Being a caregiver can exhaust not only physical and mental resources but financial reserves as well.
Tips for getting the information you need:
- Be specific and to the point
- Be prepared with all the information you may need in front of you
- Leave a clear message if necessary
- Get the name of the person you speak with
- Be prepared for some delays - the system may work slowly
- Plan ahead when possible
- Try to call early in the morning; avoid Mondays and Fridays, if possible.
Just Need A Break!
Res-pite (rés·pit) a break, relief, breathing space.
Caregivers need time for themselves and breaks are a necessity to maintain good physical and emotional health.
Possible sources for respite - Experiment till you find the right fit!
- Family Members
- Faith community care-teams
- For a mini break, try this relaxation technique. . .
- Do some deep breathing:
Breathe in through your nose to the count of four,
Hold your breath for four counts,
Blow out slowly through your mouth. Repeat several times.
What Can I Do About Important Legal Issues?
One of the best things to do to avoid a crisis is to Plan Ahead!
- What is the plan if you get sick or are injured in an accident?
- What are your care-recipient's wishes for end of life care ? (examples: tube-feeding, ventilation, Do Not Resuscitate)
When you or your loved one can no longer make decisions - who can and who will make those decisions?
Issues to consider:
- Living Wills*
- Durable Powers of Attorney*
- Health Care Power of Attorney*
Consult with an Estate and Elder Law Attorney.
* Remember documents are not official until they have been notarized.
Keeping a caregiver notebook:
As tedious as this may sound to some people, it can be a blessing when needed. Good record keeping can document tax deductions for dependent care, explain financial costs to siblings, and be a guidebook for substitute caregivers. We suggest the following be kept in your caregiver notebook:
- A copy of the Durable Power of Attorney and any medical advance directives.
- Insurance information regarding Medicare, Medicaid, supplemental insurance and any long-term care insurance.
- Names, telephone numbers and addresses of friends and clergy of your loved one.
- Emergency contact information.
- Contact information for health care including doctor names, specialty, and telephone numbers: information (i.e. patient advisory handouts) and hospital preference or limitations. Include any home health agency you regularly work with or prefer.
- A schedule of a typical day. This will help any respite friend or worker follow and know what to expect. Include information on topics such as naps, mealtimes and TV or radio programs.
- Dietary information including favorite foods and dislikes as well as any allergies.
- Description of problem behaviors such as wandering, agitation, locking him or herself in the bathroom.
- If your loved one has some dementia and asks repeated questions, make a list of the correct answers for any homecare worker or friends to follow.
How Will I Know If It's Time for Long Term Care?
Long Term Care (LTC) describes residence in one of the following:
- Family Care Home
- Assisted Living Facility
- Nursing Home
Residents receive supervision/assistance 24 hours each day. You continue to be a caregiver and advocate, but the care is a shared responsibility.
There is a range of care from independent living to nursing home residency with many care possibilities in between. Caregivers need to be realistic about how much care their loved one needs. Talking honestly with the doctor is very important.
Note the tell-tale signs that indicate the need for a change. . . The loved one may need more care than you are able to provide.
- How often is care needed?
- What type of care is needed - non-medical, skilled nursing or Hospice?
- Are the financial needs a burden?
- - -The Caregiver may have reached her/his limits.
- Snapping at the loved one over little things
- Being constantly irritated
- Seldom laughing anymore
- Feeling constantly tired or pressured
- Losing sleep, sleeping too much, sleeping restlessly
- Yelling or screaming, having crying jags or rages
- Withholding affection
- Withholding assistance to the care recipient
- Blaming the care recipient for being in this situation
- Refusing to go out anymore
- Withholding expenditures for goods, services or loved one's needs because he/she is going to die soon and it is wasted money?
(Adapted from Senior.Mag.com, 2002)
Be honest with yourself!
Local Training Is Generally Available
Learning more about your job as a caregiver can give you more confidence in your role and more success.
There is wonderful information on the internet that you can use to educate yourself. We highly recommend the following sites:
National Family Caregiver's Association
National Alliance for Caregiving; alternate site.
Family Caregiver Alliance
Community-based training is also often available
What's Wrong With My Loved One?
The more you know about the care-recipient's illness the better prepared you'll be to deal with behaviors and needs. You'll have some idea about what to expect.
A good evaluation by the doctor is essential for making a care plan. The doctor will need input from the caregiver about their observations and concerns.
Basic Facts About Adult Day Programs
Adult Day Care and Adult Day and Health Care programs are services designed to provide group care and supervision in a place other than one's home on a less than 24-hour basis to adults who may be physically or mentally challenged. These programs consist of organized activities and services, during the day, that support an adult's personal independence and promote his/her social, physical and emotional well being. The Adult Day and Health Care program differs from Adult Day Care in that an on-duty nurse provides health care monitoring, immunizations, medicine administration and various other nursing related activities supporting each participant's health. Normally meals (breakfast, lunch and an evening snack) are served daily, transportation to and from the facility is provided or arranged and off campus trips are conducted several times a year. A typical Adult Day Program will begin as early as 6 a.m. and end as late as 6 p.m. Throughout the day the participants engage in various arts, crafts, aerobics, music programs, religious programs and recreation programs. Some programs offer gardening. Specialty services (physical, occupational, speech and respiratory therapy; manicures, pedicures, hair styling and dental screenings) are arranged on site by many programs. Ideally, the Adult Day Program helps care providers by meeting all of their loved ones needs during the day, so that the working care giver can work, the fulltime care giver can get a break and the participant can enjoy life to its fullest.
Adult Day Programs costs range from $35 to $60 per day depending on the degree of care and services a participant needs. Some programs cater to seniors while others serve people with a variety of challenges (Alzheimer's, Parkinson's, Downs Syndrome, ALS, Cerebral Palsy, Multiple Sclerosis, Stroke Victims, Mentally Retarded, Diabetics, Brain Injury Survivors, amputees, paralyzed, etc.). All programs require a medical examination with a doctor's recommendation for participant enrollment.
Advantages for Caregivers and Participants:
Caregivers are Able To:
- Return to fulltime employment.
- Continue their education.
- Gain valuable respite or breaks from fulltime care giving.
- Acquire much needed to time to raise their own children.
- Acquire valuable time to cultivate their marriage.
- Acquire much needed time to plan long term care events.
- Receive much needed financial relief.
- Acquire much needed time to grieve.
- Connect with a support system to help manage loved ones.
Adult Day Care Participants are Provided:
- A safe and stimulating environment daily.
- Medical monitoring daily rather than annually.
- Medicine administration daily.
- A well balanced nutritious meals daily.
- Life enhancing and educational programs daily.
- Physically and mentally challenging exercises daily.
- Personal care/hygiene services daily.
- Rehabilitative services daily.
- An environment that promotes self-esteem and self-worth daily.
- The ability to return to their own home and own beds each evening.
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