On the 21st of December, PI celebrated Christmas with a fun filled day of music, great food and of course a visit from Santa. Christine Litchfield led everyone in caroling, followed by Santa who presented each participant with a XMAS gift from PI (large bath sheet with PI’s logo and a PI tote bag). Santa was assisted by PI’s two elf volunteers from the Work Based Learning Program at the Central VT Career Center. A special luncheon of prime rib, prepared by Chef Ed from Gifford Medical Center, was enjoyed by all. The afternoon activities included BINGO, quiet reflections with Shelly and music from one of our favorite folk singers, Paula Gills.
As an illness progresses, care needs will change. As the needs change, so will caregiver responsibilities and concerns. I cannot stress enough the importance of a caregiver enlisting support and assistance from others. We are not super humans who can do it all alone! At the end of this column, there will be a listing of local agencies and websites that can assist you through this journey.
One thing about caring for a loved one, with an illness affecting the memory, is that no two individuals are alike. They all have similarities, however what may work for one person may not work for another. As the disease progresses and your loved one becomes more confused and forgetful, there’s a strong likelihood that he/she will also become restless, anxious, irritable and struggle with paranoia. Don’t just accept that this must be the new norm; there are some very helpful medicines out there to relieve these symptoms. Discuss this with your primary care physician and/or neurologist and be patient as it may take a few tries to settle on the medicine that works best for your loved one. Added to the above issues will be physical changes as well that you will need to adjust to. Some changes may include, loss of depth perception (which means unsteadiness and poor balance), poor oral hygiene, incontinence, tremors, etc.
If/when it becomes too difficult to balance all these changes successfully; you may need to consider getting round the clock care assistance in your home or admitting your loved one to a nursing facility that can provide that. Remember, you are not super human and it’s okay to take the steps necessary to provide the best care for your loved one. Once you reach this stage, you will still be the loving caregiver but in a new capacity. You will now have time to spend with your loved one where you can just enjoy being together, without having to handle all the day to day physical care.
Signs that it may be time for nursing facility care…
- Your loved one’s illness has progressed to the point where he/she tries to hurt you or himself/herself or exhibits anger, agitation or paranoia that medication hasn’t helped
- Your loved one has care needs that you can’t handle well, despite your best efforts
- Your relationships are suffering
- Family members and/or friends have expressed concern for you and encouraged you to explore nursing home options
- Your doctor has suggested nursing facility placement
- Your own health is declining
One important thing; don’t wait until you’re at the point discussed above to make plans for this! Start planning now by researching care facilities in your area and/or how to obtain in home care, if that is your choice. Many of these facilities and service providers have a waiting list so planning ahead can be crucial to having care available when you need it.
Resources for Information and Assistance:
- Central Vermont Council on Aging: www.cvcoa.org or 1-800-642-5119 (Senior Helpline)
- Medicare has a site to compare nursing homes: www.medicare.gov/nursinghomecompare
- Central Vermont Home Health & Hospice: www.CVHHH.org or 802-223-1878
- To begin with, focus on establishing any services needed for daily care. If you or your loved one is hospitalized, a social worker will be assigned to help you prepare for next steps whether it’s being released to go home or to another facility for further care. The social worker will assist with connecting you with the services you need for this transition. Central Vermont Home Health & Hospice may be utilized for assistance with daily care, physical therapy, etc. They will also help arrange for any needed supports at home (hospital bed, walker, etc.) and visit regularly.
- Once the initial crisis is over, one of the first and most important steps is to make sure all legal documents are in place for medical and financial decision making. This may include a Will, Advanced Directives for Healthcare, Power of Attorney for financial decisions, etc. Elder care lawyers, your local Council on Aging and Vermont Legal Aid can be very helpful in this area. If/when you are unable to speak for yourself, having these documents in place allows the person you chose to act on your behalf and carry out your wishes. These are crucial documents a caregiver will need.
- Assess your financial situation and seek advice from a financial planner, if needed. Depending on your financial situation, it may be wise to establish a trust to protect your assets or to spend funds to make improvements to your home to make it easier to care for your loved one.
- For the caregiver, arranging a support system is crucial. Family, friends and neighbors will offer to help you; don’t be shy or afraid to bother anyone. Make good use of these offers; have a list of areas/things they can help with. Write in on the calendar so you’ll know when to make appointments or arrange meetings. No one is Superman or Superwoman and we all need help sometimes!
- Another resource to consider is utilizing an Adult Day Center. Adult day can offer to support the person who is ill and also the caregiver. The earlier in the illness a person begins attending an adult day, the more beneficial it is for the person attending and also for the caregiver. Adult days offer an opportunity for social engagement, physical therapy supports, medical oversight and assistance with daily care while there. For the caregiver, adult day offers a break to care for your needs, run errands, socialize with friends, read a book, take a nap, etc.
- Next month we’ll talk about when a loved one needs a greater level of care than can be handled at home.