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?
TigerDaughter: That's because most of us on this forum have heard it all, seen it all and done it all! I'm glad for your correct diagnosis of your mother.
So much good information here! I would suggest (from experience) that any dementia label be looked at in another way. My mom was diagnosed with dementia (forgetting, lack of interest, etc.) by the assisted living "experts" when in fact she was in a deep depression. A single anti-depressant Rx (providing a steady flow of "happy" chemicals past possibly compromised [mini-stroke] pathways has brought back her true nature and she has been lucid and Ok for the past 8 years. When in doubt (or hopeful), get to a gerontological psychiatrist for a full examination.
Primardie: May I add that caring for my mother and moving out of state was extremely difficult...especially since she had lost most of her senses. The olfactory loss was the worse because I would work every night to get the home cleaned up and the next day she would undo it ALL for 6 months! Wiping up a toilet seat before I could sit on it every morning was the worst!
careGuy: I think you are asking where your elderly parent is going to live. In my case, I tried YEARS before to get my mother to move closer to me than 400 miles away. She said no to all of it! That left me no choice but to leave my Maryland home and move in with her in her Massachusetts home, where she was living alone and in poor health.
SusanJMT...my mother had a huge decline in Seotember, 2015. Both Alzeimer's and dementia wreaked havoc and she has no memory of why she ended up in a nusing home. Recently. I heard of a product and I started giving it to her and from March until now, mom's memory is back. I say to you, protect your memory. I have that very clear now. Our memory is a precious thing. Yes, having a plan so when the time comes is important, but if you can add quality years to your life, that would be great. Best wishes.
I have been caring for my husband who has Alzheimer's since his diagnosis in 2007. Looking back on our journey there are a few things I wish I had known about or done when I was still able to. 1. Get your house and affairs in order. Just like everyone has said contact an attorney to make sure all the legal documents are in place. Also, get your own life organized - whether it be a cluttered house, garage or just getting your own legal affairs in order. God knows you will be hard pressed to find the time to do these things once the disease takes over your lives. Set up a notebook with all information that someone would need to know should something happen to you - Dad's meds, doctors, favorite tv shows, caregivers contact information, etc. Set up a notebook for his daily living for the caregivers and family to make notes in. This helps to track changes, problems with meds, eating, etc. 2. Don't panic! This is much easier said than done! When you stay calm the patient stays calm. My husband has done things that I would have never thought he would do - a kind, generous man who would never hurt a fly went to someone punching a caregiver. In the middle stages of the disease he seemed to be able to read my mind so be careful what you're thinking (he was probably reading the look of frustration and exhaustion on my face). Our last year and a half have been unbelievable and I'm not quite sure how we lived through them. Also, don't be shocked when you lose friends and family, they just seem to disappear. I think it scares them to think it could happen to them. Don't waste your time or energy on negative thoughts about this. And the most important thing to remember, this was not an answer to your prayers, but you are an answer to your Dad's prayers. Much luck to you and your family.
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??" :))
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.
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.
The resource that KayBransford gave was beneficial to me this morning, thank you! This stage of life is NOT EASY no matter what the circumstances. Try to find the good...based on your comment, YOU ACTUALLY have a diagnosis AND you have a sibling to work with (which may or may not develop as you go). Thankfully, our family saw this coming two years ago and we secured the POA (both medically and financially) and the living will with an ELDER CARE Attorney. She has been a great resource over the past two years as Daddy's symptoms worsen. Unfortunately for us, the primary care is a back country physician who will not diagnosis our father, will not refer him to a neurological physician or a Geriatric physician that specializes in these circumstances. (I believe this treatment is described as Iatrogenic). My best advice, ask, ask, ask lots of questions...both attorney's, pharmacist, physicians etc. Also, make sure that if you are talking to a office worker that you know if they are qualified to answer your questions...are they a nurse, (RN or LPN), or if they are just a medical assistant or not even that. The internet is full of information spend time researching!
All of the above advice is excellent. Get an Attorney to set it all up in advance. But the nicest advice is to just enjoy him/her now. Sit down (maybe for an hour or 2 at a time) with them for a talk, even if you're only listening. I just went through this with my husband and as I look back, these last months/year were the best in our 66 yrs of marriage. We actually spent uninterrupted time with each other, growing in love.
Find a good Elder Care Attorney. It can be overwhelming trying to do it all yourself, and it's good to have legal backing in so many instances. Best wishes!
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.
In GA I contacted the Agency on Aging to look for help for my mother with early Alz and they transferred me to the Atl Regional Commision. it is a free service and the consultant assigned to you will guide you through all the questions and concerns you might have and give all referrals to other agencies that can help you. Is an excellent service. Even though my mother doesn't qualify yet for some services I already know what to do when the time arrives. You can check in your state for the Agency on Aging and they will help you prepare ahead of time so you can feel less stressed with so many things you will have to deal with in the future. Good luck!
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.
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.
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.
@churchmouse. Thanks for the suggestion. Is this the checklist you're thinking of? http://www.alzfdn.org/EducationandCare/checklist.html
This is helpful at a micro level, but I was looking for something broader, covering all the financial, legal and healthcare stuff we need to start prepping.
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!
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.
I would suggest (from experience) that any dementia label be looked at in another way. My mom was diagnosed with dementia (forgetting, lack of interest, etc.) by the assisted living "experts" when in fact she was in a deep depression. A single anti-depressant Rx (providing a steady flow of "happy" chemicals past possibly compromised [mini-stroke] pathways has brought back her true nature and she has been lucid and Ok for the past 8 years.
When in doubt (or hopeful), get to a gerontological psychiatrist for a full examination.
Also, don't be shocked when you lose friends and family, they just seem to disappear. I think it scares them to think it could happen to them. Don't waste your time or energy on negative thoughts about this. And the most important thing to remember, this was not an answer to your prayers, but you are an answer to your Dad's prayers. Much luck to you and your family.
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.
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.
http://www.alzfdn.org/EducationandCare/checklist.html
This is helpful at a micro level, but I was looking for something broader, covering all the financial, legal and healthcare stuff we need to start prepping.
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!