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I'm not sure I'm in the right place. I'm no longer a caregiver. I took care of my parents then my in-laws. Then just the 2 who didn't talk or write. My Mom & my husband's Dad. Then my husband. And last my cousin.I'm now seeking help for myself. I'm not used to asking for help. Nor do I really know what I need. You see my Mom had dementia & now I have it. It's very frustrating sometimes I can talk as clear as a bell & now I'm noticing I'm becoming almost incoherent as I speak. I forget what I'm trying to say. It comes out all mombo jumbo. Making no sense of it. Mom didn't speak so I never knew what she wanted. I can,so I'm trying to explain how it feels to have this disease. It's getting harder & harder to explain. FRUSTRATING IS THE BEST WORD!! The problem is I have no one to tell it too. Yes I have kids. 2 1 in state & 1 out of state. My son is here. And he semi tries to help. Maybe run to the store for me.In & out again. I think he's afraid of what I might say? Not here long enough to find out.I want to sleep alot. Sometimes I can't keep my eyes open. EX, wake up 7am looking for a nap by 10am. It used to be in 6 hrs 7am 1,2pm.

Dear Laurie.... Everyone here has given you great advice. Just want to send love and hugs your way.
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Reply to Hrmgrandcna
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Alva and Geaton have about covered it for now. As for your son, realize that he is afraid. Most likely you have been an in charge person. I say that because you have cared for so many people and are noticing changes in your own behavior. To see you needing help is pretty scary for him. If he is not familiar with dementia, perhaps get some information to him to read, so he understands what is going on. Also, if he goes with you to the neurologist, as Alva suggests, he will find out a lot, can deal with it all better, can decide for himself what sort and how much of involvement he is able to have, and help you arrange for other help when needed. Please take the advice given, but relax, take little steps to get all things in order, and take care. I do think being around other people is helpful for dementia, so consider a move to independent living or assisted living if it is affordable. Good to do while you still can manage much of the move and understand what is happening.
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Reply to ArtistDaughter
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I'm so sorry you are going through this experience. What a long, tough road you have traveled.
I'm sure your son would rather avoid seeing you like this, but at least he is available to help out a little.
There is a man who has posted on this forum, I can't remember his name, who has been sharing his experiences with onset of dementia.
I would advise you, while you can, to make plans for your care, starting with a visit to a neurologist for a proper diagnosis, if you haven't already.
Perhaps you have a condition which can be treated. If not, then you could gain an understanding of what to expect. And don't count on your children to be the ones to take care of you. If you continue to deteriorate, you could find yourself not safe living at home on your own.
Talk with your kids, make a plan together. Complete POA documents, a living will, and choose someone to help you with paying bills if you can no longer manage that on your own.
And, by all means, Go ahead and get some rest! It doesn't matter how often you nap! I am 63, don't have a medical condition (that I know of), and have been caring for my husband for 10 years. I also get very sleepy around late morning, can't keep my eyes open, and have to take a short nap. Sometimes again in the afternoon! It is just physically and mentally exhausting, as you know, caring for someone who needs you 24/7.
Please, continue to share your experience, your concerns, and questions here. We are interested in how you are doing.
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Reply to CaringWifeAZ
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Alvadeer gave you solid advice. I will emphasize that you need to know the lay of your financial landscape in order to best navigate the coming years. If you have a financial planner, you need to let them know about your situation. Or, meet with an estate planner who is familiar with Medicaid. You need to fold in your PoA (assuming you have one) and maybe even make it a Durable PoA (so that your PoA won't have to jump through any hoops to activate their authority).

If you live in your own home, you might now want to consider a continuum care community: IL, AL, MC, LTC, hospice, so that as your care needs change, it will be as seamless as possible to ramp up your help.

Look for resources and programs through your local Area Agency on Aging, or calling 2-1-1.

Sounds like your language challenge may be aphasia? Have you talked to your primary doctor about this? You need to keep following up with it, as early on there may be some physical or occupational therapy you can do for it.

Consider hiring a companion aid to come in a few days a week to drive you on errands and keep you company. It will take some time to find the right person or agency.

Looking into local churches to see if they have Elder Care/Visitation ministries. Our church has one (I'm on the team) and people don't need to be believers or members for us to get them on the rotation.

Regarding sleeping more: there could be many reasons for this, and one of them is depression -- which is very common with cognitive impairment. Please have this conversation with your primary doctor. My Mom was becoming weepy in the morning and she knew it wasn't normal for her. Her primary put her on the lowest dose of Lexapro and it made a big difference.

I wish you lots of support and peace in your heart on this journey. May you receive as much help as you've given over the years. Blessings to you!
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Reply to Geaton777
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Have you talked to son about this disease and progression. Have you finished, with an attorney, all documents for POA if he will accept it, and been to your bank with your son? Have to and your doctor gone through all tests available and have you had a consult with neuro-psyc.

You must work fast now to get things in place and to get safe placement plans to the best of your ability.
You are at present very well "spoken" in terms of being able to write. Start at once with your son and your medical team and take son with you to all appointments regarding diagnosis and prognosis.

I am so very sorry. That is something that in your case seems to inadequate, as always it does. But you are ahead of the game in knowing this is coming, as was my own brother who, after a car accident was "incidentally" diagnosed with Probable Early Lewy's Dementia by Symptoms. He and I worked hard and fast to get his home sold, get him in ALF. get me on as his POA and Trustee. Once he was freed of worrying about any bills and etc. his condition actually only IMPROVED until a year later when he died at 85 of another condition. I was told by his wonderful facility that they often saw that happen when someone was safe, not worried, and was having things handled.
If son feels incapable of setting up and handling this then there are Fiduciaries who can be hired. Once setup is over it is an hourly fee monthly to handle your affairs.

I am wishing you the best.
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