Dealing with Progressive
and Chronic Illness
By Esther Goldstein, B.Sc, B.S.W., RSW
As we age there are a whole host of progressive and chronic illnesses that may impact our independence significantly. Some of these illnesses are devastating for the person and caregivers/family alike as they come to terms with the diagnosis and type of care required. Cognitive illnesses, such as different kinds of dementias and physically degenerative ones, can be equally devastating for all involved as everyone impacted must come to terms with the person they knew disappearing or declining into someone else. In many instances, caregivers are forced to look at the issue of providing care or moving their loved one to a facility that can provide such care. If the illness is sudden or progression is quick, it becomes an even more difficult a process.
Coping with a new diagnosis takes time – even for those who
suspect it in advance of it being confirmed.
Both the person impacted and their loved ones need to allow themselves time to accept and deal with the implications of what is to come. Undoubtedly, there will be a range of emotions involved for everyone. For some, sharing the diagnosis and what you are going through with others becomes a helpful way of coping and understanding so you can begin working towards dealing with the adjustments that will need to be made. It is important that you take the time to educate yourself about the illness and options for treatment that are available. Don’t feel shy to ask for help when you need it and accept offers of help from others. Try to be as realistic as possible about the disease including your expectations of the person affected and of yourself and what you can do. Caregivers need to look after themselves and be aware of signs of burnout and stress. Keep in mind that diseases progress differently in everyone and at different rates. When you are planning ahead you need to consider and accommodate for the possibility of changes in the person’s needs as time passes.
It might be helpful to join a support group of others
going through what you are.
Often those going through the same thing can provide valuable information and can be an incredible asset as they can understand and as such, support you through the ups and downs of an illness. Also, there is comfort in knowing you are not alone. Remember that you cannot control the disease process but you can control how you deal with it. Take each day as it comes and recognize there will be good and bad days – make the most of the good days and support each other on the bad ones.
It’s important to ensure that legal issues are taken care of
before the person declines and cannot manage their affairs.
With a diagnosis of a chronic, progressive or life-threatening disease – ensure the person’s Will is up-to-date and properly witnessed (and know the location of the original document). Additionally, make sure that there are proper powers of attorney for both property and health and that you can access the original copies of them. If these documents do not exist, begin a discussion on what the person’s wishes are and gain an understanding of what they would feel comfortable with you authorizing in the event that they become incapable. Then arrange that a proper document be completed. A Power of Attorney can be completed with a lawyer or can be downloaded for Ontario residents from the website for the Ministry of the Attorney General at http://www.attorneygeneral.jus.gov.on.ca/english/family/pgt/poakit.asp. If the person becomes incapable, ensure the necessary people are aware i.e. the bank, investment advisors, etc. While the person is well and capable, create an “Emergency File” containing all important documents (banking, health etc.) and ensure it’s accessible in the event the information is required in the future.
If more care is required, begin with encouraging support in the home. It’s best if the home environment can be made safe and care comes in, rather than quickly jumping to the idea of institutional care. Often it’s easier to accept a need for relocation if all efforts have been made to keep someone in their home with supports. Start by contacting your local Community Care Access Centre (CCAC) and from there you can be directed to additional supports if required.
If you reach a point where relocation is the only option, ensure you investigate alternatives carefully and keep in mind what your loved one needs and wants in a new setting. Ask many questions about the place and ensure that their care needs can be met now and in the future if their condition declines.
Esther Goldstein, B.Sc., B.S.W., RSW is a former acute care hospital social worker and the author of the “Comprehensive Guide to Retirement Living®” now in its 13th edition. She also administers the affiliated national website www.senioropolis.com and lectures on Eldercare issues in various venues. For further information on this and other topics related to seniors and relocation, visit senioropolis.com.
2600 John Street, Unit 207, Markham, ON L3R 3W3 T: 905.475.5222 F: 905.475.6369
