Two weeks ago, this blog was about recognizing that more than normal fluctuations had happened and the stress that accompanies such a slide. This week is about things you can do ahead to prepare for that time. Remember, preparation is like insurance. You certainly don’t want whatever it is you are insuring against to happen, but you know it can. Experiencing such a slide is going to be stressful no matter what, but having a plan in place and information available will go a long ways towards limiting that stress.
Know where to get help. Develop a list of places and people that may provide the help you will need. Call them now, while you aren’t in crisis and find out about their services. Sort them out by groups and grade them so that you will have a first and second choice when the time comes.
Plan for respite care: Jim and I are fans of planning a respite routine well before it is actually needed. Start out with just a few hours a week. Then with a routine in place, it can be expanded when you actually do need to get away for a while, even overnight. This initial time is very stressful for both of you. Having a respite routine in place will reduce your stress because you will already have a plan. It will reduce your loved one’s stress by keeping change at a minimum.
You may already have friends or family coming to stay occasionally. This will not be enough. You will need more than a few hours of time that is often clouded by worry that your helper may not know what to do if something goes wrong. After a long downturn, regular respite care needs to start as soon as you can get it set up. You can choose between at home help or respite care in a long term care facility, or if your loved one can still function well enough, adult day care. The same issues that apply to choosing long term care apply to chosing any of these.
If you plan to use home care, start using it immediately for a few hours a week—enough to build a relationship with your helper. If you plan to use respite or day care, start visiting the facility. Go to lunch or dinner there, and use their day care services. Even “take a vacation” together and visit overnight.
Equipment: You may suddenly need a wheelchair, a bathroom commode, a hospital bed or even a lift. Know where you can get these supplies. Physicians can write prescriptions so that Medicare will cover much of the cost. Find out now what the process is for this to happen. For example, can you call in your request or does the doctor need to see your loved one and evaluate the need?
Hospice. This may sound extreme, but it is also practical. Hospice offers the services and equipment you need to make your loved one more comfortable and you less stressed.
Walter’s slide happened after a bout with a UTI. The doctor told us the end was likely near and suggested Hospice in our home. It helped physically but I became really depressed. I checked out funeral homes and looked at urns. It’s been three years now and Walter is still living. He never recovered from his downturn but he still has periods of awareness. That’s when he tells me he is going to live a lot longer than I think! Walter was on Hospice for a year before they decided he didn’t qualify. By then they had helped me over my depression and I was able to find a LTC facility for him close to home. --Joan
Hospice requires a doctor’s documentation that death is likely within 6 months. However, many people, including those with LBD, recover enough that they go off hospice and live for many months or even like Walter, for years longer. That’s because hospice is designed to decrease stress and we know what stress does to the Lewy team! Using hospice is not an admission of failure or even that the end is coming in less than a year. It is a practical use of available services in a time of severe need. Hospices vary in the services they provide. Read more about Hospice in the 6/15/13 blog.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.