Recent diagnosis of LBD

suzi783

I am new to this disease and have fears and questions of what my reality will look like and a sense of urgency to get all my end of life plans and make sure I have all things including legal affairs in order. And I have fears as well. I have found many things that describe situations from the caregiver side. I appreciate those as well but I am still in the „“acceptance“ period and I don’t know where I will find a caregiver or if I will even be able to afford one. When I can’t work any more, I will lose more than half my income. I would like to learn ways that people with this disease have been able to navigate all the decisions and planning for the inevitable and hopefully still have some fun before it gets worse. I am 71 with Early stage LBD. I live on my social security and work a 12 hour a day job 4 days a week.
Thank you!

JulietteBee

I am so sorry to hear of your diagnosis.

I hope and pray that you are not going through this alone, without family or lifetime friends.

I do applaud you for utilizing the time you now have to make future plans for when you won't be able to.

You need to select a Durable Power of Attorney (DPOA). It needs to be someone you trust to manage your estate, bills, finances, etc when you are no longer able to.

You should assign someone to be your Healthcare Proxy. They will speak on your behalf when you are no longer willing or able to express your wishes for healthcare & the continuation of life.

You want to have a Living Will drafted. Do you want heroics to maintain life via CPR, with its inherent ribs cracking, or should you enter a vegetative state/ noncoherent state?

You should probably see a Certified Elder Law Attorney or one who specializes in estate planning. If you own a house, you will want to protect it by putting it into a Revocable or Irrevocable Trust. Ask the lawyer which one will be best for your situation.

If you are a religious person, you may want to spend sometime planning your own funeral program.

If you do not currently have life insurance, while you are able to purchase a policy, you should seek to buy one. Funerals on average are now costing between $10-15,000. With a policy, you can have them assigned to the funeral home of choice upon your death.

Lastly, do not be like my DM. PLEASE make plans with your family from now as to your desired living arrangements when the time comes. Do you sell your current house to pay for your Independent Living/Assisted Living apartment? Do you want to age-in-place in your own home while hiring outside help to come in to provide care around the clock?

You have a lot to process but I see where you are seeking to maximize the times of lucidity you now have.

This is a vile, life sucking disease. I pray that you find that God is a ready source of help during this stage of your life. God bless!🙏🏽

Watson1

suzi783 welcome lbd i have alzheimers i have a couple of friends with lbd learn as much as you can, talk to other people that have dementia because they are the ones that really understand. yea get papers in order you will need help for all the thing that once were easy in the future. yes its a challenge , lots of changes. adaption is key, lots of good books by people with dementias. don't be shy share with other your change of situation.remember you are not alone we understand your situation the b0at maybe taking on water but the bilge pumps as still working………..

ladyzetta

Dear Suzi.

I suggest you talk to a attorney who specializes about the things you need to know. That's what I did, I learned what I needed to know about finances, and I had many questions answered. I agree with everything Juliette, posted. Hugs Zetta