feeling so alone(2)
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Kathy,
I am so sorry you have to be here, but welcome to this wonderful group of people who are going through different versions of this - it sounds absolutely overwhelming. First of all, please take care of you. Try to get your sleep. Find answers here on the forum, so many wise people who can share advice. One thing I hope might be possible is for someone to (eventually if not now) come in and spend time with your DH so you can get some respite.
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Kathy, welcome to the forum, but sorry you have a need for it. People here will give you excellent advice, they will understand whatever is bothering you, and they will offer support.
It sounds like he might have anosognosia, although it might come and go. Here is a good article on it. https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm
I'm sorry you were hit so hard by Ian. I have relatives in Cape Coral who are dealing with it too.
And I'm sorry to hear about the loss of your job. But if it's a very high stress job, that might work to your benefit, as long as you can make it financially. Caring for someone with dementia can be very stress related too, and you need to keep other stresses at bay as much as possible.
It would help you if you read all the posts you can. There is a lot of information here.
Finally, here is one more link for you that really explains dementia. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf
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Hi Kathy,
Thanks for sharing and welcome to this group. I'm relatively new as well and have found great comfort and information on this site. You are not alone, as we all are in some phase of the journey. Please continue to focus on your own care. You are important.
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Hi Kathy. Like Ed mentioned, spend time reading on this site. If you're like me you'll probably scare the hell out of yourself by what so many of us are dealing with or have already dealt with. But the knowledge you'll gain will be so helpful in the long-run. Keep in mind that everyone's dementia experience is different and you and your husband probably won't experience all the possibilities.
If you haven't done it yet, find a certified elder law attorney and get your legal stuff in order, things like durable Power of Attorney, Healthcare Power of Attorney, wills, etc. In my opinion these things things need to be done asap. Taking care of that was one of the first things my wife and I did. It's important in so many ways and eventually your husband won't be able to sign his name.
In those early days my wife also said many times that she wished she had never gone through all the testing and that she didn't know that she had EOAD. I suspect she was not happy with me for pushing her to get it done. But, it had to be done to rule out other possible causes for her problems.
This forum was a huge help to me. Very few topics are off limits here. If you guys are having particular problems or if you have certain questions, other folks here have had the same issues and questions. They'll likely be able to give practical advice. This is a long hard road to be on. At least here on this forum, we all understand and can relate to each other.
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Falcon mentioned seeing a CELA. That really is something you don't want to wait for. It is really THAT important.0
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Kathy, am so sorry you need to be here, and the hurricane…I’m also in bullseye area, we’re probably almost neighbors. My DH was diagnosed with Alzheimer’s 3-4 years ago, all you write sounds so familiar from those early days.
The biggest, quickest thing I can say: The resources from the local Alzheimer’s Association (all free) are invaluable. They also have support groups all over the county, although I’m not sure of details since Ian. But the main office is running. It’s called the Dubin Center, near Cleveland Ave and College Parkway. Many support groups meet met there. You can Google Dubin Center Fort Myers for more info.
They’re also doing more Zoom now, since Ian.
Maybe bigger for you now: Their professional staff can meet with you privately, and talk about things to expect, what you should plan for or think about, and tell you Local experts, such as lawyers, doctors, CPA, home help, etc.. They don’t recommend any one, but do give you a list of knowledgeable people.
You really do need a CELA asap.
The support groups are great, everybody’s been through this, and shares tips, plus socializing.
This board has more useful, helpful tips than anywhere. Then the Dubin Center can help with local resources and more personal tips.
By all reports, the hurricane has caused widespread mental/emotional damage, especially for PWDs and caregivers, as you say, now handling recovery, too. Take all the help you can get.
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If I were to recommend one thing it would be to have him seen by a geriatric psychiatrist. It sounds like some mood meds might be in order....it might delay or halt other more troublesome behaviors later. You are not obligated to be his punching bag. Sounds like from your post he is still driving.....in my opinion this should be brought up to his medical team and let them provide their opinions on this. It is possibly a ticking time bomb in many ways.0
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Welcome, Kathy, although I'm sorry you have a need to be here. You've gotten some great advice so far. Getting affairs in order is a priority. Learn as much as you can, but remember every PWD is different. This is by far the best place to be to learn, ask questions, get support, or just vent. In person or zoom support groups are good, too. It's hard, but try to take care of you. Your DH needs you and you love him and want to do your best, but you have to be able to do that. Get help as needed, even if it's just a friend taking him out to lunch so you can nap, run errands, whatever.
I remember the time right after diagnosis all too well. It's devastating news. I knew nothing about dementia. My emotions were all over the place. I was still working and worrying about DH when I wasn't home with him. I was tired. You get the picture. Be easy on yourself.
Blessings to you and DH!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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