I Have This Terminal Disease,
It Moves So Slow It Is Killing Me!
One of 25 Best Alzheimer’s Blogs of 2012
Mike Donohue is a brave man. Courageous, direct, and bold, his blog energizes readers with a passion for action. Dementia Endured gives a hint in the title as to the nature of this talented writer: he will endure. And with a personality like Mike’s, it’s easy to believe that he shall overcome, as well!
His life experiences are opened to the reader, and his journey recovering from alcoholism to adjusting to Alzheimer’s holds its own fascination for visitors to his site. Mike’s strength and determination will remind readers that dementias are one area in which it’s best not to hold any punches.
Wednesday, August 31, 2011
Monday, August 29, 2011
Commitment to AD Affected
Saturday, August 27, 2011
Thursday, August 25, 2011
Tuesday, August 23, 2011
Monday, August 22, 2011
Saturday, August 20, 2011
Thursday, August 18, 2011
Monday, August 15, 2011
Alz.Org or some other program, more social as medical in nature, needs to direct itself to better providing for the unique needs of families afflicted by Alzheimer’s Disease. Provision of more positive programs will arm those with this family disease to more successfully cope with its effects and maintain more an atmosphere of normality such that the person with the disease is not relegated to expensive warehousing.
This New Service Is Needed.
There is an adjunct service crying out in need for Alz.Org or some other equivalent organization to act on. People need a place to go upon learning they have Alzheimer’s disease to learn the skills of what to do about it.
The person’s world and family are abruptly and irreparably altered by an Alzheimer’s diagnosis. It presents a collage of predicament that must be faced which needs a set of tools with guidance for facing them.
There is so much need for first stop places, gateways for folks suddenly confronted with the question: “What can I possibly do now? How do I handle this? How do those around me deal with it, deal with me?” We need a place to come, to sit down and learn how. Those of us who have it and are early stage are ideally equipped and more than happy to provide that service. We need help in organizing it, a place to provide it, entities to gather inquiries and refer folks to it.
The how to, what to and where to is incidental. It can be regular “get together for coffee” times and places, organized support groups, gatherings at Alt.Org, churches, public places where peer people able to help regularly attend.
Starts on First Diagnosis
It starts in the Doctor’s office. With a good system in place from the organization sponsoring it, Doctors and Staff could have available all of the places where a person might go and who they might call. This is simple. If they have the places and the places are up and running they can simply say: “Go there, they will tell you what you need to do, what you need to know.”
We all need to understand that quality of life continues for those of us with this difficult prognosis. We just have to know what to do with it. It is easy for some of us who have been knocked around a little and had to learn it the hard way. Some other of us for whom life has been smoother need more help. Those of us who have been there and done that will give it to others if we can find them and see them to do so.
The Families of The Disease Need Treatment Too!
Ours is not only a medical disease it is a disease with particularly difficult social, cultural and psychological ramifications.
It is a family disease suffered by the entire family. There is crying need for help coming from caregivers, children and grandchildren, who all need help in accepting the fact of the disease and coping with its results.
Care givers are drained; the unsung heroes are devastated by the loss not their own; suffered twice as much by them.
Family and Friends.
Children, friends, peers, have trouble grasping full understanding of the events that occur following the diagnosis, understanding the process and course of the disease.
Too often their reaction is couched in not knowing what to do. Therefore they do nothing. Delay of action leads to embarrassment. This results in benign neglect by them. This in turn isolates the afflicted one if not the caretaker too.
Children, particularly adult children, can get into denial. They do not want to think Mom or Dad has this horrible affliction. They don’t want it to be happening. This produces everything from downright denial to simply deferring it is a matter that they would rather not discuss or deal with right now.
This also isolates the person with the disease.
Roles change for the entire family dealing with the disease. This is particularly difficult for the afflicted one to accommodate. Vulnerability is an altogether new thing for many of us. Personal reaction can range from irritation to depression to inability to deal with or accept the new and often subservient role. It is hard enough for the caretaker to step in and do everything without having also to deal with identity crises by the partner.
These are all matters that can be the subject of support by their fellows who have been dealing with the problems before them.
Mid and late stage provide an altogether different challenge. For those stages the more costly care becomes needed.
Cost Of Care Economy Can Be Achieved!
We can achieve positive results and cost of care economy by concentrating more alternatives for dealing with those yet in early stage the purpose of which is to keep them right there as long as possible.
Sunday, August 14, 2011
Who Pays The Cost?
As these extra expenses escalate, who pays for them? You do. When can you ask for help? Anytime, anywhere, anyone can be asked. When are you entitled to help? Only when you have reached what the law calls the “Poverty Threshold.”
This threshold is when you own no more than in the area of $103,000 total value of everything the husband and wife have. It was this amount when I checked with the experts in 2007. I believe it remains the same 4 years later.
Everything you have is just that! This includes bank accounts, retirement accounts face value of insurance policies, pension plans of which you are the owner not employer provided.
There are exclusions, not many, nonetheless there. Your homestead up too $500,000 in some cases others up to 1,000,000 in value are excluded so long as the other spouse remains living in it. Certain annuities if they fit within a rigid definition of “purchase of flow of income only annuities” with no or restricted right of beneficiary appointment are excluded. If you have given it away more than five years before application for assistance is made it might qualify. By giving it away they mean it. That does not include revocable trusts.
What is needed is change.
Change in the style and cost of care.
Provision of more economical care.
Change of the existing infrastructure responding to the present needs produced by Alzheimer’s
Creative change of Public Assistance beyond the current compensation formulas.
These can run anywhere from qualification to supplemental provisions taking the form of more tax deduction and credit allowances, credits or incentives for public, private and non-profit ventures all directed to reducing the cost and increasing the availability of help for families faced with the overwhelming task of accommodating the alteration in their lives caused by Alzheimer’s.
IT IS IN THE PUBLIC’S INTEREST.
It is in the public’s interests this be done. Alzheimer’s disease presents our short term future with a financial crisis that will devastate our already exhausted private and public capacity to pay its cost.
Proposals for Change.
What are sorely needed are lower level care facilities and assistance programs. In whatever form we need to consider and seek out greater economy of care in a variety of methods as alternatives to the high cost of institutional nursing home and assisted living of the facilities now provided.
Kinds of Care.
These can be although not limited to boarding and care homes, co-ops, foster homes, mutual help homes of people buying or renting a group home or grouping in same location apartments to hire and manage their own needs. Programs to support this are needed to help organize, facilitate and maintain these kinds of alternative care approaches. These could be supplied by private enterprise, charitable institutions or some lower level function than the Federal Government. This is being done in some areas; so much more is needed.
Additionally tax breaks and public incentives are needed. There has been a concentration of effort on removing any opportunity of anyone avoiding their personal obligation to pay for institutional care by government. This may be as it ought. Nonetheless if private estates must first be drained of the funds needed by those depending on the person needing care, those dependants will continue to have the same economic need during and after the care is given the one in need of it.
The epidemic proportions of the issues associated with Alzheimer’s disease need attention. Tax deduction is needed for in home care, day care, respite care, any care in other forms. Deduction allowance is needed for the cost of care facilities. There needs to be a scheme to reward economy of costs in providing services. Other tax benefits are needed for programs to supplant the need of public funding for care. These need to be explored and the best of them provided.
Current Tax Treatment.
Although some deduction of cost of care facilities exists it is not clear, and too often predicated on qualification processes that escalate the cost prohibitively. For a person needing such care it is questionable who has the deduction that might exist. Is the patient needing the care qualified to deduct it or is it the deduction of the caregiver requiring the additional help. Who determines the qualification of the person in need before any deduction can be taken?
The tax breaks depend on the taxpayer entitled to the break having the income from which to take the break. Many on fixed income fall between the cracks. They have too little income from too much estate to qualify for public assistance. This is one of those open cracks. Some scheme of credits, rebates or something more direct needs to be considered for those who do not benefit from the deduction credit allowed against taxable income.
Change Will Save The System.
We need to find a more economical way of providing care and respite for the afflicted before those needs bankrupt the system and put everyone out on the street. The problems today with cost of living, health care and insurance costs, medical and hospital costs, the inability of our politicians to get it together in any meaningful way demonstrate what will come. The prospect of what we all will face is inversely magnified by the inability of our culture, institutions and governmental processes to care for the current insurmountable costs we have caring for ourselves without Dementia complicating it. How then are we to meet this coming crises bearing down on us at breakneck speed.
If we are unable to find a cure for this disease quickly there will be no funds left with which to seek economy of care. The coming increase of people needing care because of this disease is frightening.
Saturday, August 13, 2011
Alz.Org needs to concentrate on formulating and developing programs of care offering a greater economy than those as now exist.
When a family is faced with its diagnosis of Alzheimer’s disease it faces a variety of issues that need immediate resolution. One of these is the handling of their estate which may be irretrievably altered by reason of the current prognosis for care of the Alzheimer’s afflicted.
Financial Issues of First Facing This Disease.
Of the many things that need to be dealt with will be:
1. What will happen if the care needed has cost for which the family is not presently prepared to pay.
2. Is there long term health coverage to pay this?
4. Is the Alzheimer afflicted able to continue working, earning the same salary? Is the spouse working earning income, is that enough to currently support the family?
5. If income of one subsides or of all of them reduce will the family be able to make it?
6. Where does the family go to fill the gap?
The Answers To These Questions Are Not Pretty!
1. The family’s private funds are normally the first source for payment of any cost of care not immediately covered by the insurance of the family.
2. Long Term Health Care coverage, if sufficient, if it specifically makes provisions, and is designed to run a sufficiently long, will pay cost of care in the home and out of home care provided by agencies qualifying for reimbursement. This applies to most institutional Nursing Home and Assisted Living Facilities. It may apply to some day care and group home settings.
3. Health Care coverage and Medicare do not pay anything but immediate Hospital and Medically related expenses provided as part of treatment. This most often does not include Nursing Home, Assisted Living facilities or equivalent styles of In House or Away from Home kinds of help.
4. In the event of diminution in earnings in the household by reason of the disease the private funds of the families are the first if not only source to make up the difference. Charitable or public assistance is predicated on the inability to pay and in many cases is difficult to get unless there is no other way.
5. If the family cannot make it, Public Assistance is available as well as assistance from many giving groups.
6. The problem is for those in-between.
Long term health care seems worth every penny paid for it, if you have it. If you do not, with an Alzheimer’s diagnosis it is unlikely you can get it. But, remember, you get what you pay for, no more, no less. If you were smart enough and have it be sure it pays enough. Be sure it runs long enough. Be sure it covers Nursing Home and Assisted Living Care.
Some financial planning with an expert is recommended. This is most important when it comes to evaluating the availability of Public Assistance. A need for care does not automatically produce Public Assistance. The law is very specific in determining where and how you qualify for it before you can get it.
In most cases the funds of the husband and wife seeking assistance (their entire estate) cannot exceed a few thousand more than 100,000 between them. This may seem to be enough. It is not when you stop to consider this:
When the need for Assistance kicks in the current need of the family doesn’t kick out, it continues. As an example: The husband, no longer earning income, needs daily attendant care. If the wife is home, able to give it that is not a new cost. In this situation the couples living conditions do not change however, they continue as they were.
The cost incident to the disease only goes up and too often is yours alone. What this means is: Current cost of living does not go down, if anything it goes up. These costs continue during the lifetime of both the husband and the wife. Circumstances change what those costs might be. They can go up, they can go down. We of course know their usual direction.
They will go down if the husband needs to go into assisted living or nursing home or some other out of home care facility. Without regard to who pays the cost of this the expenses do go down for the wife to the extent she no longer has to pay the eating and living expenses of the husband. She need no longer pay those costs incidental to his living at home. These are the only costs that stop. Housing, clothing, medical care, health insurance for both, electricity, heat, rental or mortgage expense, insurance, car care, these all remain.
When the husband dies the wife’s financial needs do not change appreciably with respect to herself. They continue. They continue her life time.
Now we come to totaling all of this to see how long that $100,000 lasts. Pull out your budget. What do you pay a month, a year? What of it will change if at all when one of you enters out of home care? Of the fixed amounts multiply them by the number of years of life expectancy the survivor is likely to live. Will it last?
Friday, August 12, 2011
Organizing services and promoting programs designed for care to alleviate the insurmountable costs that will occur as the number of Alzheimer afflicted multiplies creates needs our attention. The “boomers” coming of that age where the incidence of onset escalates in number is coming quickly. It will overwhelm current capacity for care and exhaust private and public ability to pay for it.
Concentration of a different kind of care can provide solution.
Particular emphasis should be given services concentrating on early stage Alzheimer’s afflicted. They remain sufficiently cognitive and articulate, able to help themselves stay in place in early stage. Kept in place they will not contribute numerically to the deluge of need that will arise from the added people needing care for middle and late stage Alzheimer’s.
Public policy can reap the value from concentration of services and enhancement of programs for early stage. Doing this will provide cost of care economy and give time for continuing research to find the cure. Time is as important a need for finding the cure as is funding for it.
Need More Than Comforting Care.
Currently so much of the care is provided on a palliative basis. This is properly so. It is the kind equipped to benefit the middle and late stage afflicted who are unable to help themselves and whose condition is not able to improve from care.
This same approach for early stage afflicted defeats any benefit that might otherwise accrue for them. It doesn’t deal with them as they are; it invites them to become passive and unresponsive. This simply encourages them to slip into a more dependent and needy state.
In early stage the afflicted are best able to remain in place if provided for appropriately.
Positive creative activity contributes to the person in early stage staying in early stage longer. Any care approach that stimulates and activates is more appropriate for this group. In this group although the process can’t be reversed it can be prolonged.
A Definitive Positive Result Can Be Obtained.
Why is this so? Many reasons, the most prominent:
1. Early Stagers are more stimulated to exercise daily or often weekly. It is a given, exercise is the best treatment and the best means of staving off the debilitation inherent in our disease process.
2. Social activity stimulates continuing at an even cognitive plateau, inactivity and isolation accelerates progressive decline.
3. Creative activity enhances cognitive ability to find alternative pathways to compensate for mental loss. This prolongs the cognition and acuity.
4. One study suggests the activity of socializing, advocating and dealing in network with peers about AD boosts cognitive performance of those doing it. This is consistent with the personal anecdotal experience of those participating in such activity.
5. Current medications prolong the cognitive state and sometimes increase acuity in many of those in early stage.
The more the early stage can be prolonged for a person the greater economy of cost can be obtained in an otherwise foreboding deluge of epidemic-like escalation in cost.
Thursday, August 11, 2011
The purpose of this paper is threefold:
1. Recognition of the efficacy of increasing support and implementation of programs designed to keep Early Stage Alzheimer’s Afflicted in that self sufficient and constructive stage
2. Promoting alternative ways both by legislation and by support and implementation of programs to economize the cost of care for the individuals required to pay for it.
3. Support and Implementation of programs to provide service to those newly diagnosed, giving them a social service contact of a kind to inform them on what to do and how to handle their new and different circumstance and some kind of a support system of peers for those diagnosed in Early Stage to secure for them the greatest wherewithal to stay in Early Stage as long as possible.
This paper is in answer to a request from our local MN&ND Alz.Org policy group to provide input for their review of policy. It is also submitted to National Alz.Org for the same or any other purpose.
My assertions are predicated not only on the personal experience of the impact of first learning “I got it.” It looks at the economy of dealing with it in the framework of where we are now, where we as a nation and culture are going and the continuing impact that will be there because we “have it.”
The emphasis has been on funding and finding a cure. This is important, very important and needs to continue. There are other considerations that need priority of emphasis.
The direction of this paper in two of its parts addresses the economic efficacy of treatment to some of the Alzheimer’s afflicted, namely those in early stage, and the economy of cost for all of us in Early-Mid-Late Stage.
The third part of this paper addresses the need to get the person diagnosed into as good a direction as possible for the simple reason of their acute need that exists and too often is not met. It also serves the corollary reason of capturing Early Stage afflicted in order that their needs be served quickly. Early Stage as long as possible. This provides immediate economy to the huge cost of care faced by the country in the onslaught of escalating numbers of people reaching the age of high risk of incidence of this disease.
When it comes to funding and finding cures, a good argument exists: “There is only so much Alz.Org can do.” This is simply answered: “If this disease reaches the numbers afflicted that normal aging population increase suggests the cost of care, private and public will bust us leaving nothing with which to fund finding a cure.” A corollary to this is: “Time for research is as important as funding the cost. The more time given increases the chance of discovery. Delaying the process of large numbers of afflicted progressing from Early to Mid Stage would increase time and delay the financial impact of the cost of care.”
It is for these reasons I take this threefold approach.
They appear in the paper under the following titles:
2. We Need To Give Emphasis To Economy Of Cost Of Care
Should you want to read all ten pages posted as one document click on We Need to Expand our Concentration