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I AM NOT A LOVED ONE, and I'm not alone
I'd really like to see a change in the terminology. At 74 with a new diagnosis and dementia, without any family or friends left and still driving, I find it difficult to get information on how to manage on my own, make plans. But the hardest immediate barrier is that all the materials seem to be for caregivers and address patients as the loved one. I am not anyone's loved one and initially it's hurts to have to explain that to people, especially medical professionals.
I'd be interested in how others have addressed this. I don't have the energy to be educating people. I'm angry, sad, grieving at this devastating diagnosis. But these are not symptoms of dementia, these are human reactions to a horrible diagnosis.
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May I suggest that you contact the Dementia Action Alliance, an organization formed by and run by people living with Dementia. They are a wonderful group of supportive people. https://daanow.org/
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6 ReactionsMy post was about changing use of the term LOVED ONE.
I couldn’t get that reading the title.
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1 Reaction@jlam1950 I agreed with you. We are still “here” so they need to speak to us.
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2 ReactionsFirst sentence: Change terminology.
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Eventually you will need to have someone chosen to speak for your wishes and look afters your medical and financial factors to your benefit. This can be done in many ways but should be done so your wishes get documented and shared while you are of sound mind. A lawyer could help with this process. Even though you have this diagnosis of dementia, you can still be of found to be of sound mind and able to define specifics about your wishes concerning your health and finances for the time when you can no longer speak for yourself. There are ways already established on how to do this. Contacting The Dementia Action Alliance as suggested by another responder is an excellent way to start. https://daanow.org/ Don't wait.
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1 ReactionA brain injury organizer helped me quite a great deal as does technology. I am not in the same situation but also alone.
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1 ReactionI get you
First, contact the dementia organization recommended to you.
Second, get all your ducks in a row now. This means contacting a lawyer or your CPA if you have one.
You need a will, power of attorney and a living will to say the least.
Are you a home owner? Your lawyer can help you with this.
If you have assets where do you wish them to go when you no longer can make this decision.
I am guessing no close friends? No extended family? Any religious organization you are connected with? You must make plans for when you die...any spiritual confidant you can contact? I believe the dementia organization can help you with everything. You are right. Not everyone in this world has a "loved one"...you are most certainly not alone in your particular situation. The cards you have been dealt, unfortunately. But sadly, we all eventually get "cards" we do not want in anyway, shape or form. And we must deal. You are of sound mind now. Thankfully it is not too late to make all your personal wishes be known and documented.
The world can be a very unfair place. We all know this. We simply must do the best we can, we are all only human after all. I wish you courage and strength as you travel this road you are on now. Do you have any faith? If so, hold onto that. Blessings in your life journey.
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