Why Not Me?

My mom likes to tell me the story about when my aunt was diagnosed with Brain Cancer in 1993. She said that my aunt started to ask “Why me?” and then after some thought, said “Why not me?” I have been thinking about that a lot lately. My father has always said that if we don’t learn from our mistakes, then the experience was a waste. I wonder what I am supposed to learn. I don’t want to miss the lessons, because I don’t want this to be a waste.

Maybe I need to be the voice of those experiencing Dementia in their 40″s. Even within my Support Group, my husband is the youngest. The first thing I needed was a “To-Do” list. The support group was very helpful with creating it and maybe I am not the only one who would find that comforting. I don’t mind sharing. This is the list that I have been working on since June and what I would recommend to anyone who needs a place to start. It is not in any specific order.

1. Contact Social Security/Disability and begin the application process. This is lengthy and required 2 separate  appointments and a significant amount of paperwork for us. It was very time consuming to gather the information. We hired a company to represent us (The cut is 25% of our final settlement up to $6000) but we needed the help. We hoped the company might be able to help us with the wording needed from our Primary Care Physician, but they weren’t much help. To date, we have been denied twice and are awaiting a Hearing in February (21 months after the initial paperwork was filed). This has been by far the most frustrating part of the Dementia diagnosis.

2. Meet with a Dementia Specialist and bring the Neurological Report. (Don’t assume that they have a copy even if you asked to have it sent to the doctor.) Bring a second set of ears. Both you and your loved one are too emotionally charged.

3. Contact an Eldercare Lawyer. We use Nale Associates in Waterville, Maine. They give you direction with your unique situation and they will give you a list of what they need in order to start the paperwork. Bring a support system. We created a Supplemental Needs Trust in my husband’s name and changed all beneficiaries to that Trust, appointed Financial Power of Attorney & Medical Power of Attorney for him, and updated my Will after removing his name off the Deed to the house. The goal is to be sure that your loved one has no more than $10,000 in assets so that he will some day qualify for Medicaid while protecting the retirement of the caregiver. This process cost us about $2000 but we could not wait. It has to be done while your loved one is still of sound mind. Borrow the money if you have to.

4. Download the Maine Advanced Healthcare Directive and notarize it. (This covers End of Life Directives.) We are still working on this.

5. Begin to move all major assets to the caregiver’s name only. I had my loved one sign the title of his vehicle at the bank. Banks will allow you to do that and will hold the title until the vehicle is paid for.

6. Call the Retirement Company and Life Insurance Company and have the beneficiary changed to the Trust.

7. Have the beneficiary of your Stocks changed to the Trust .

8. Be sure that future inheritance is protected in a Trust and that it cannot be accessed. This can be terminated in the case of the loved one’s death if written properly.

9. Attend conferences and support groups for training.

10. Contact agencies such as A PLACE TO START (in Southern Maine) with Sally Tarte. She helps to match future Residential Care Facilities to the unique needs of the loved one and the family.

11. Order Alzheimer bracelets through the Alzheimer’s Association, one for the caregiver and one for the loved one. This is about $100 and has a purple emblem which is unique to Alzheimer’s/Dementia . I had better luck calling in the order than doing this on-line. I wear one too. If something happens to me, authorities will know that my loved one is home alone.

12. Contact the local Sheriff’s Office and record your loved one as a “potential wanderer” and include a recent picture.  If authorities respond to your home, they will know that your loved one is memory impaired.

13. Create a core group of friends/family willing to be your loved one’s “wheels” or keep him company during long days or times of respite for the caregiver.

14. Push for a medical evaluation and the wording needed for SSDI paperwork. One suggestion is to ask for a spinal tap to verify Alzheimer’s.

15. Have your loved one write letters to friends and family for the future.

16. Have your loved one fill out future cards for holidays and major life events, especially for the children.

17. Make memory books for your loved one with labels.

18. Inform your car insurance company of the diagnosis and supply them with a letter from the doctor regarding your loved one’s permission to drive. In some cases, the DVLA (Driver and Vehicle Licensing Authority) will ask for medical records, a driving assessment, and may only provide a limited license that will be regularly reviewed.

19. Pick out a gravestone and have your loved one write funeral and burial wishes. The life expectancy of your loved one averages 7-10 years from the time of diagnosis.

20. Consider a service dog.

21. Contact the local VA if your loved one was in the Service.

22. Contact Federal Congresspeople for help in speeding up SSDI. They are a very good resource and often make headway when you or the company representing you, can’t.

23. Buy a bunch of readable books and have your loved one read into them for future grandchildren.

24. Be diligent about collecting and holding on to all related paperwork. Collect specific letters from medical personnel and past employers that specifically outline what your loved one can and can’t do, with data that supports it. This will help with SSDI.

25. The caregiver must be the manager of the household finances.

This is also what I know, or what I think I know:

*Our income bracket will qualify us for many programs through the Department of Health once my husband has received SSDI for 2 years.

*The 5 year rule after moving assets around isn’t always hard and fast. See your lawyer about your individual case.

*We have local programs within our county, which also include Day Care Programs.

*If my husband is placed in Residential Care, it is 1/2 the price of a Nursing Home. An assessment called a Gould Assessment is used to determine care, and assets are looked at but not hard.

*If placed in a Nursing Home, the average cost is $10,000 a month. In order to qualify for assistance, the spouse must make below the cost of the care and is limited to $117,000 cash value including everything. This includes Life Insurance and Inheritance if it can be cashed in. That is why we had to put those in an protected Trust.

*The Government cannot take our home and 1 vehicle.

That’s it. That’s all I know. It has been a lot to take in, in just 4 months. However, it is my sincere prayer that we can offer hope, encouragement, and a little direction to others who are found in a similar situation. May our experience and our “To-Do” list bring comfort, if only for a short time. The best advise I can provide is to take one day at a time and plan for the future while living for the moment.


  1. After having the Gould Assessment, you should be eligible for homecare. As time goes by and he gets worse, he would be eligible for more time. You would pay a monthly fee usually based on your income. A personal support specialist would come to your home for a predetermined amount a time. Ex: 3 days a week for 2 hrs a day. it would involve personal care. light housekeeping, meals, companionship and other things. I have been doing this work for 15 years and see that it really is a break for the primary caregiver. I live less than a mile from you, so if there is anything I can help you with , give me a call. Maybe I can help. 382-6613. Maybe you would like an evening out or info or ???????


  2. Pingback: Early Onset: A Challenge to Diagnose | crlives

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