My dad was recently diagnosed with dementia and I'm feeling overwhelmed about all the legal, financial and heathcare issues that my brother and I will need to deal with. Can anyone recommend a resource to help us create a plan or a check list?
Careguy, I've been there. I don't know of any resources other than the ones listed here, but, from experience, here are some highlights for you. Legal. Someone need to serves as POA (power of attorney). The POA will have the legal right to act on your dad's behalf in all matters except healthcare. POA will allow you to manage his accounts (financial and otherwise), pay his bills, make legal decisions, buy and sell property, etc. Healthcare. Someone needs to be named health care proxy. This person will have the legal right to make health care decisions for your dad if he is unable to. Financial. A will. If he doesn't already have one, you should work on one now. Legal again. A form called "Authority to Dispose of Remains." This will let the funeral home know who has the right to make decisions about your dad's "final disposition." Healthcare again. Living will. This is a form that details what your dad's wishes are regarding life support, artificial nutrition and hydration. All five of these forms can be done by a lawyer in 1 visit. I would recommend doing this as soon as possible. It removes the restrictions on your ability to advocate for your dad.
The best advice I ever received was "plan for two steps ahead." If it never comes to that, wonderful! If it does, you're ready. Start vetting in-home help now. Think about what that will look like. Do you know someone who does this? Do you have friends who know someone and who have used this service? Get referrals. Visit assisted living facilities and nursing homes. Pre-decide which ones would be acceptable to you. Look into what would be involved in getting your dad on Medicaid. If he ever goes into a NH, he will need that.
Most important, enjoy your life with dad as much as possible. Take time to talk, laugh, live. He may never get worse. Once you have the legal/medical prep out of the way, forget about it until and IF the need arises. I would advise you to do something I didn't do: focus on your dad's abilities rather than his deficiencies. When my mom was first diagnosed, I would loose sleep for days because in the grocery store she asked, "What's a walnut?" I agonized over "losing" my mother a little bit at a time. Meanwhile, she was living on her own, getting around, enjoying a basically normal life. Now, she's in a nursing home, in diapers, unable to speak coherently, and would never ask what anything is. If only I'd known the riches I had back then! What I wouldn't give to go back to those times. But I couldn't enjoy them. I only thought about my mother's eventual decline. Don't fall into the same trap I did. Good luck to you.
While I cared for my dad he didn't have dementia up until the last 6 months or so of his life but my brother and I were faced with the same issues you mentioned: legal, financial, healthcare. We didn't sit down and create a hard and fast plan but over time a plan evolved. I took care of anything medical related and my dad's day to day issues and my brother took care of anything business related. If a major decision had to be made we made it together regardless of whether it fell into medical or business. And we each knew what the other was doing and what was going on but for the sake of organization and to lessen stress we divided up the tasks.
The Alzheimers Society has a wealth of material and advice, including the kind of checklist that you mention - sometimes it can be very helpful to go through a tick box exercise, as though you were project-managing your father's care, I agree.
If your father has only recently been diagnosed, don't forget to keep him involved as far as you realistically can and as far as he seems comfortable with. There isn't an on-off switch - one minute he's capable, the next he isn't. As long as you're careful about what he feels up to discussing on a given day, it's important to take his preferences into account.
I'm glad that it sounds as if you and your brother are teaming up for this. Look after each other, too!
Try Alzheimers Association at alz.org, from the home page click on Life with ALZ, and scroll down to the Caregiver Center. Big section on the right about planning for the future.
My Dad took care of creating all of the vehicles I needed to take care of my Mother during her decline into Dementia. I managed all of the work for the last ten years: financial, physical care, medical decisions, managing the house, repairing it, selling it, moving Mom to a care facility when the time came. Everyday I wonder when dementia will start for me, suspecting that it has when I cannot immediately recall a rarely-used high-concept word or the name of someone who was famous in the 1950's. I now realize, from this forum question, that I must also make arrangements to make it easy for my daughter to manage my life if I am unable to do so in the future. I think this will relieve the concern I feel about growing older and perhaps, less capable.
Check out MemoryBanc: Your Workbook for Organizing Life - it's available on amazon and is used to help caregivers go from overwhelmed to ordered. You can also check out DealingwithDementia.org that is a blog written to help deal with all the stuff beyond the legal issues you will be feeling. Full disclosure: it's my work that was recognized by AARP Foundation and was a result of the system I created after stepping in to help my parents.
Talk with an Elder Lawyer. Get POA's in place for financial and medical. Get yourself to a good support group. If your father is a Veteran contact the VA and find out what services are available to you and to him. There are Day Care programs, there are respite days that they can provide. There is a program that will pay you or someone else to care for him. Depending on how much care he needs would determine how much money you would have available each month. They program can not pay a spouse but any other member of the family, a friend or you can hire a caregiver. If he has a disability that is related to his service he may qualify for residence at a VA facility. (eligibility based upon % of disability) Good luck it is a long rough road.
Look for a "live" caregivers support group. You may not become a long-term member but it's great to be in a room with other people who know EXACTLY what you are talking about.
First of all......Take a long breath. Sounds easy and simple I know but you have come to the right place as you have heard with all these great answers. I take care of both my parents. I took care of my in laws of which both have passed so I learned a lot from that but these are MY parents so it changes a bit. My dad is getting ready to turn 94 in Aug and doing "fairly" well living on his own in a retirement facility with an assisted living facility on the other side. My mom is in end stage dementia at another facility. I lived with my mom and dad for 6 mos. 6 1/2 years ago when my dad suffered a heart attack. My mom was fairly functional but having me live there turned her whole schedule upside down and she was really hard to handle so we put her in the facility for a respite so my dad could recover and she never came home. She got used to their schedule and that was her home. Here is what I have learned the hard way and my point......this is a journey. Take is one day at a time, one step at a time. Don't look ahead in fear or with anxiety. As posted above, get financials in order (trust me, it will be so much easier in the end) then work on medical needs. He's been diagnosed and that's the first huge step. I didn't read all the posts but if anyone hasn't mentioned this, you can also look into Aid and Assistance for Veterans if he saw any combat (the lawyer can also help you with this). I don't know your exact situation or age but if you can, try to take time for yourself. Don't give up your social life or things you love to do (if you can). Please, please don't over give. I did and still am and it took me down the rabbit hole of which I'm clawing my way up now. I'm not saying this to scare you it's just I've learned so much and come a long way (still have a way to go :) I have great Faith, Church and friends that have gone through this or are going through this now (one of which her mom just passed this morning) so hang on to that. A support group is also a great place to vent (of course this site is also) when you need to and they also have great ideas on how to cope. If needed down the line, there are adult daycare centers where YOU can drop off and just take a breath and relax. Wow.....I could go on and on but others don't want to me too :) Anyway, please come back to this site with any and all questions. Everyone's situation is a little different but we are all the same. Good Luck and God Bless your journey. P.S.......It really helps to keep your sense of humor too. Things are going to happen that make you say "seriously??" :))
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The best advice I ever received was "plan for two steps ahead." If it never comes to that, wonderful! If it does, you're ready. Start vetting in-home help now. Think about what that will look like. Do you know someone who does this? Do you have friends who know someone and who have used this service? Get referrals. Visit assisted living facilities and nursing homes. Pre-decide which ones would be acceptable to you. Look into what would be involved in getting your dad on Medicaid. If he ever goes into a NH, he will need that.
Most important, enjoy your life with dad as much as possible. Take time to talk, laugh, live. He may never get worse. Once you have the legal/medical prep out of the way, forget about it until and IF the need arises. I would advise you to do something I didn't do: focus on your dad's abilities rather than his deficiencies. When my mom was first diagnosed, I would loose sleep for days because in the grocery store she asked, "What's a walnut?" I agonized over "losing" my mother a little bit at a time. Meanwhile, she was living on her own, getting around, enjoying a basically normal life. Now, she's in a nursing home, in diapers, unable to speak coherently, and would never ask what anything is. If only I'd known the riches I had back then! What I wouldn't give to go back to those times. But I couldn't enjoy them. I only thought about my mother's eventual decline. Don't fall into the same trap I did. Good luck to you.
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If your father has only recently been diagnosed, don't forget to keep him involved as far as you realistically can and as far as he seems comfortable with. There isn't an on-off switch - one minute he's capable, the next he isn't. As long as you're careful about what he feels up to discussing on a given day, it's important to take his preferences into account.
I'm glad that it sounds as if you and your brother are teaming up for this. Look after each other, too!
Get yourself to a good support group.
If your father is a Veteran contact the VA and find out what services are available to you and to him.
There are Day Care programs, there are respite days that they can provide. There is a program that will pay you or someone else to care for him. Depending on how much care he needs would determine how much money you would have available each month. They program can not pay a spouse but any other member of the family, a friend or you can hire a caregiver.
If he has a disability that is related to his service he may qualify for residence at a VA facility. (eligibility based upon % of disability)
Good luck it is a long rough road.
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