Gathering Resources for
Long Term Care
by Sheryl Karas M.A.
Has your loved one received a recent diagnosis of a progressive dementing illness? If they are still able to think rationally and plan for the future NOW is the time to talk about and put into action strategies for long term care. This means: assume the best but plan for the worst. Yes, we all hope there will be a cure for Alzheimer's, Parkinson's, Multiple Sclerosis, Huntington's and ALS. We all hope the disease will be reversed before the patient needs daily care. But too many times caregivers put off asking for help or putting a care team into place or looking at assisted living facilities until it is too late to do so in a simple straight forward manner. In dementing illnesses a patient's ability to make rational choices for their own well-being and their ability to be flexible dramatically decreases over time. Putting off having other people involved until one "absolutely has to" makes things harder not easier because, in many cases, the patient fights the very assistance the caregiver needs to keep on going.
The time to call a family meeting and put a plan together for long term care is the day you get the diagnosis. If that date is long past and you still haven't gathered the troops, do it now! Let everyone in the family, your neighbors, colleagues, church members and friends know that your loved one has been diagnosed with a serious progressive illness that will require more care than a single person can provide over time. Ask them to help you plan for the future and put a long-term plan into place. The main purpose of this meeting is to detail what issues are likely to come up over time - in the worst case scenario - and get help gathering your resources.
Resources take many forms. Some people have enough money saved to hire all the help they might need. Others are cash poor but house rich. Some people are rich in family and friends who are able and willing to help. Some people are rich in friends or family who live elsewhere. Some people belong to a church or community group with a history of helping others in need. On first glance you might think your options are limited but if you concentrate less on holding tightly to how things "ought" to be and more on how you would handle an extreme situation you will find that you have more choices than you might expect. For example, I know many people who own a house in Santa Cruz but whose very loving family lives 4000 miles away. Those are the people I meet every day who tell me they have no money for in-home support and no family to help. Yet they own a small house in Santa Cruz whose value has inflated to more than half a million dollars - more than enough to live almost anywhere else in the country and provide for their in-home health care needs for the rest of their lives! It's a hard choice to even consider leaving a home that you love - believe me, I know! - but what an incredible resource! If moving is not an option, consider a reverse mortgage. The bank pays you a monthly sum you can use for health care or living expenses in exchange for equity in your home. You need to shop around for the best deals but it could be well worth your time.
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Side Note about the Family House
Nobody questions that the surviving spouse or dependent child of a patient with dementia should be able to keep the family house. However, many parents -- and their adult children -- also want to find ways to hold on to the house to pass on as an inheritance and will go to great lengths to do so including refusing to pay for their own respite care or finding a lawyer to transfer ownership in order to qualify for MediCal services. I've even helped people do that but times have changed. Now, those of us in Social Services are coping with a shortage of Medi-Cal eligible beds for people who have NO resources and inadequate funds for the number of caregivers we're trying to support. It's often legal and perfectly understandable why people would want to keep such a valuable asset as a house in this economy. I probably would, too. However, every time a family chooses to use public services as a way to preserve the family home as an inheritance for someone else it literally takes services away from someone who has no such resource. And, eventually, that's not going to be possible anymore because, until America changes how it feels about higher taxes to support adequate social services or a national healthcare policy that really works, we don't have enough public resources to go around.
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People are an essential part of this resource list. Find out who is willing to help and what they are willing to do before things get so bad that you can't imagine asking anyone to help. If you currently enjoy a favorite activity outside of the home, decide to keep it sacred and develop a list of people who say they could be called to take turns staying with your patient to help you get to that appointment before it's an absolute necessity. Try to make the list as long as possible and it will be easy to get people to say yes because the commitment will be shared. Then take advantage! The first time you feel nervous about leaving your loved one alone is the time you start making calls. As time goes by you could have a cadre of people who your loved one trusts. Not only that, they could be fully trained and able to be of assistance in the future because they will have seen the progression of the illness and learned the basic skills along with you over time.
Another essential piece is to nurture connections with other people. Things change over time. It can be difficult for people to figure out how to have a meaningful conversation with a dementia patient as the disease progresses. You may find yourselves getting fewer party invitations or being left out of activities that would be uncomfortable for those involved. That doesn't mean these people have stopped caring but if you have always interacted as a couple it can be challenging to bridge the gaps dementia creates. You may need to create new relationships with other caregivers or find ways to get together with old friends as an individual.
However you do it, find out how you can support each other with the challenges in your lives. Build a foundation of offering or exchanging service so it's not unusual or embarrassing to ask for help when you really need it. For example, lack of childcare is a significant stress for many people. Could you watch someone else's children once a week in exchange for them watching your patient? Is someone in your life too busy to cook? Would making an extra portion of food when you're cooking your own dinner be an easy thing to do for them? There are lots of ways to support one another and that's an important part of having a community of support you can count on. The biggest excuse caregivers give me when they say they can't ask anyone for assistance is "they have their own problems. . . I couldn't possibly burden them with mine." How true! We DO all have our own problems and how sad it is that we all think we have to go it alone! So break out of isolation and help each other break out of victim mentality. Too often we think, I'm too victimized to help anyone else -- people should be helping me -- never realizing that if everyone feels like a victim, everyone is waiting for help. The really sad thing is that if you would only be willing to help each other, help could be right next door. When you and your potential support team members start to think of yourselves as allies on separate but equal paths it becomes a lot easier to get what you need.
Resources also include community services and various living options. You can get a list of what's available from your local caregiver resource center or Area Agency on Aging (look in the phone book.) Locally, (Santa Cruz, San Benito and Monterey Counties) call us here at Del Mar Caregiver Resource Center. Then start checking these resources out or get members of your support team to help you do it. If you anticipate needing to hire care, find out what's available and how you will afford it NOW. Find out what in-home support services, day care programs, and assisted living or nursing home care costs and decide under what circumstances you would use each option. Be sure not to rule out residential care! Some are quite nice but, unless you plan ahead, the cost could be prohibitive. If things get so bad that you can't keep your patient at home any longer - say, you get sick or have an accident - it will mean a great deal to have checked out these places ahead of time, gotten on waiting lists or created a financial plan to handle it. Not only that, you might both want to live in some of these places not as a last resort but for the joy of it. There are beautiful assisted living communities which have wonderful activities and easy ways to make new friends. In addition to what we have locally, consider moving out of the area to find the most suitable and affordable options. A flexible retirement community near friends and family could be a godsend in the later part of your life. If you have enough equity in your house you might want to take advantage while you still can.
Educational materials can be important source of support. Do you know what the normal progression of the disease is? Do you know the full range of potential problems you might need to grapple with? Do you know where to get the help you will need should these changes come about? Call your local chapter of whatever disease-oriented organization that could help (i.e. the Alzheimer's Association, the Huntington's Society, etc.) and take advantage of whatever educational materials they provide. Family consultants at your local caregiver resource center will also have a wealth of information at their fingertips that they can make available at no charge.
Last but not least, resources include your emotional and physical health and abilities. Get help in realistically assessing your personal resources. You and your family might want to keep your patient at home as long as possible but is your health up to it? What physical problems do you struggle with and what is your own prognosis? What will you need to do to keep yourself physically and emotionally healthy? Is church a big source of support? How will you ensure that you can keep going? How will you get enough exercise, sleep, social contact and emotional support? Nobody benefits by you sacrificing yourself! If you are the weakest link in your loved one's chain of support you are both in trouble. Take a good honest look at how you are doing, make sure you get what you need and re-evaluate every month.
Caregiving Articles
© Copyright 2007 Sheryl Karas & Paul Hood
A new version of this article can be found in Sheryl’s latest book The Spiritual Journey of Family Caregiving.
Caregiving Articles