Helping Those Who Care for Parkinson's Patients
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Okay, this is the hardest post for me since my first one. My dad had his very first dementia test today. It shows that he has "moderate" dementia. The test given was the Montreal Cognitive Assessment, which I'd never heard of before. They told me that this test will show underlying dementia, irrespective of medication side effects and things such as deafness and low vision. I had hoped that, at worst, they would tell me that he has "mild" dementia, or even that he was normal and it was just the side effects of the medication or the fact that he has hearing and vision problems, which he does. But no, he has moderate dementia, in addition to anything else. On the positive side, the neurologist and the nurse practitioner who performed the test were both very sympathetic and supportive. The doctor called me back to speak to me personally; I did not expect this. My keeping a diary of his actions proved to be very helpful. She looked at it and said, "This is very bad!" I'm in pretty much of a funk right now, which I did not expect. I mean, after all, I got what I wanted, right? I wanted proof that there is, indeed, something wrong with my father, and that I am not just being overly pessimistic and worrying about nothing. And I got it. I was right. So I'm supposed to be happy, right? NOT!!!! (Okay, I know this sounds obvious now, but like I said, I'm in a funk, and when you're in a funk, you don't think straight. That's why I try to avoid funks.) I was awake early this morning, partly because I was anxious about the test, so at the end of the day I was sleepy, so I took a 2-hour nap. I thought this would make me feel better, but it didn't; because now, in addition to having this depressing reality on my mind, I don't have the escape of sleep anymore. I always try to stay positive, and one of the ways I try to achieve this is to focus on solutions and getting as much control as possible over the situation. So on the way home, I broached the subject of Power of Attorney with Dad. He refused to give it to me. When I said that it would help "if it came to the point that [he] would be unable to manage things [himself]," he simply said, "It won't get to that point." I did not mention that the test he had taken was for dementia, and since he is completely oblivious to his mental state, he did not assume it. Or, that is, he didn't mention it. I don't know what he thinks the test was for. I don't want to ask, because I don't want him to think I think he's mentally unstable. Never mind that he IS; I just don't want him to think that I think of him that way. Does this make sense? When I think about asking him if he knows what kind of test it was, I keep asking myself, "What good would it do?" I can't come up with an answer. After all, I could just wait until he is so far gone I could get a court to grant me conservatorship and guardianship. But that doesn't sound too constructive, and sounds like bad caregiving. But it is possible. I'm in a quandary here. I know that the most important thing is for us to maintain goodwill toward each other. Bad blood only makes situations worse. His trust in me is the most important thing here. That will disappear if he finds out I think of him as mentally unstable. Should I really just let things deteriorate to the point where court action is necessary? Or should I risk alienating him by pushing the Power of Attorney issue? Any advice will be greatly appreciated. |
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Hi, Tara So sorry that you are in such a funk. I suspect that it is due to the fact that you now know definitely what you have suspected. Denial is no longer an option. You mention that you always want to fix everything and this is something you can't fix. It sounds to me like you are a wonderful caregiver and you need to know and remember that. The problem with the dementia is the pt usually is not aware of what is going on. If you read some of the posts on the subject you will see this is true. You are now faced with a situation that is not going to get better - only worse. Many of your father's actions are not going to be pleasant and you need to remember that it is not your father doing this but the disease. He may say mean things and do things that are strange. Remember it is the disease. The trust he has in you may well deteoriate even if you don't take charge. Dementia can, and usually does, make an individual paranoid and dellusional. You are so fortunate to have such a caring neurologist and his staff also seems compassionate. I believe that I would ask him to provide a statement saying that your father has dementia and that he is no longer able to handle his financial and medical affairs. Then speak to an attorney and see what is required to get POA. I do think that you need it now and not later. My personal opinion is to not tell him what the test was and to proceed as usual. You will find that telling him something only provokes him and he will forget it in a short time. The goal here is to make your life as managable as possible. Talking to him, explaining things andattempting to get his opinion are a waste of time and will only make both of you frustrated. It is very much like caring for a small child. Give him short answers and directions and keep him as safe as you can. Everytime I read a post such as yours I remember just how terrible the dementia can be and what it did to me at the time. There will be good days - take advantage of those time and assure him that you will be there and that you love him. At this stage the person seems to be so frightened of abandonment. We are here for you. |
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Thanks, Carol. By the way, just out of curiosity, how come you chose the user name of "annwood"? Anyway, I know that, with time, I'll just get used to it, just like I've gotten used to all the other stuff. It's just going to take time. Right now, I'm overwhelmed with all the technical details of having to assume responsibility for every aspect of his life, which is something I've never done with anyone before; I don't even have kids, let alone had to handle wresting total power over someone's life from them against their will. I just hope it won't be too difficult. To show just how much of a neophyte I am, I'll ask it now: Am I responsible for his debts after he's gone? I don't care if I don't see a dime in terms of an inheritance, but I don't want to be saddled with, for example, his credit card debts. Is that enough of a newbie for you? As for the personal aspects of it, I just liken it to being a single parent. In a lot of ways, it really does resemble that. Just having someone to talk to helps immensely. Thanks for your input. |
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Hi, Tara Annwood is the name of the street where I live. When I registered on this site (eons ago) I wasn't sure about it so I chose not to use my name. I know how overwhelming this must seem. I think the first thing I would do is cancel all of the credit cards. You will need POA probably to do this. I also think that you need to sit down with an attorney and see how to accomplish all of this. I don't think you are responsible for his debts but they will have to be paid out of his estate. Again this is what the attorney needs to do for you. Does your father have a will and directives? |
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Oh, the credit cards are already in non-use. He still has enough presence of mind to not use them at all. Besides, I do all the purchasing anyway. It's just that the amounts owed are huge. As for what he has already decreed, he has drawn up a will and made me executrix and he has a living will. He has drawn up a medical power of attorney, naming first his primary doctor, then my sister (because she's a nurse), then me, in order of consideration. But he will not allow me to take over his finances right now, even though he is trying to enact all manner of hare-brained schemes with what he's got. I'll be contacting an estate attorney next week. |
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Tara, I hope the funk you're in will subside a bit as you come to terms with the results of your dad's testing. I agree with annwood's statement that at least now you know for sure what you're dealing with. I think your first order of business needs to be speaking with an elder law attorney who can help with the POA, help figure out if your dad qualifies for Medicaid & advise you on any other legal issues you aren't sure about. Hopefully you will feel better once you get answers to some of those questions. A good attorney will look at your dad's situation - assets, debts, etc. - & be able to help you figure out what's best for your situation. Make sure you tell the attorney everything. I have a friend who's mom didn't specifically provide for payment of her debts in her will. She had no assets to speak of except real estate. She left the real estate to her sons & they wound up having to decide whether to sell the property to pay her debts or pay her debts themselves. They wouldn't agree & wound up with astronomical attorney fees to be paid on top of everything else. Once you have the legal questions answered & finances under control I hope you can pursue trying to find someone to help you with your dad. You need & deserve some time for yourself. I procrastinated about finding help, trying to hold on to what little cash my mom has, hoping she'd be okay alone during the day. I now wish I'd realized a year ago that we needed to talk to an attorney, line up help, etc. so we'd be prepared. Please keep us posted & take care of yourself. |
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| Posters: This thread, and in particular, the good advice given to see an attorney reminds me to insert caveats. I noticed the expression "talk to an attorney". As our forum participants have been advised in the past, prepare for any talks you are going to have by outlling or listing all the topics you want to include in your discusssion. Your medical people will average about 1/2 hour of office time for you and it will help if you can list symptoms, RX's prescribed including over the counter meds, and current behavior patterns from a caregiver's perspective. On the other hand, your attorney will likely charge based on an hourly rate. if he (she) has a legal size tablet visible, present a copy of a bullet point outline and avoid unnecessary story telling. If they are well versed in POA, Living Wills, Guardianships, Conservatorships, DNR documents etc etc. your legal bill should be a resonable one. If you see the legal tablet being used to record your every remark you might be entering stage 1 of bankruptcy. good luck! Bob C |
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Very good advice, Bob. I have urged people to make SHORT lists when they go to the doc. Time is very limited and they usually don't want to hear many details. They will ask for further clarification if needed. The same is true with an attorney. You are being charged for every word and remember that includes any telephone conversations. Making a list assures you that all you intended to say gets said. At length conversations about behavior, problems, etc should be reserved for us on this forum - we don't charge and we know what you are going through. |
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This is all very good advice. In fact, I'll print out your replies and refer to them when I'm writing a bulleted outline. Christy, the incident involving the sons and their mother's real estate made me think about the boundaries of responsibility. In all fairness, that lady was not responsible for preventing her sons from creating their own problems by squabbling and creating more attorney fees. If they would not agree, that's their own undoing. But am I to understand that they were held LEGALLY RESPONSIBLE FOR HER DEBTS? Now, THAT worries me! What I'm asking is, what if her debts are greater than her assets? Are the sons now responsible for them? Fortunately for me, there won't be a problem, because Dad only has one dilapidated house which is more fit for demolition than rehabilitation, and my sister (his only other heir) agrees with me. But even if she up and decides to change her mind, I'll just let her have it to do as she wishes. I've got my condominium, and that's all I want or need. Thanks again for the good advice. Like I said, I'm totally in the dark and could use all advice anyone can give. |
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Tara, I don't think the brothers would have been responsible for debt over the value of her real estate but she was what I call property poor. You are so right that the brothers created their own problems by both wanting things their own way. I wasn't sure what your situation was. I'm sorry your dad doesn't have much but I'm glad you & your sister agree. My mom & I own our property jointly & her intention has always been to leave whatever cash she had to my sister because the house will automatically go to me. Now she's not sure what to do since she has to use her cash to pay for the sitter. I owe a mortgage on the house but will gladly let my siblings have the place if that mortgage is paid off so I can start over somewhere else. My sister has a house but stays at mom's house. I'm in an addition I built on years ago. I've offered numerous times to sign my interest over to my sister if she would pay off my mortgage. Her response always is that she can't afford to keep it up. I think you'll feel much better once you speak with an attorney. If you sell your dad's place & use the funds to pay someone to help take care of him you shouldn't have to worry about whatever debt is left after he's gone. |
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Tara, The hardest thing for me with the Parkinsons has been the dementia. I think books and advice on grief has helped. Recognizing and accepting how you feel--the anger, the denial, sadness, depression, etc. is important. You don't just lose your loved one just when their body dies--you lose them when the spark that makes them who they are gets taken away by the dementia. Don't forget to save time for you and accept that you have needs and feelings too. |
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I am a lawyer in Texas and I'll share what I know...you are not responsible for his debts unless you co-sign for them, but they will be paid out of his estate at death, if there is anything in it. You might want to consider, and I am just throwing this out there, contacting his credit card companies and negotiating a payout to stop the excessive interest they charge. You can inform them of the situation and that his medical bills and care will essentially bankrupt his estate, and they can take ten cents (or whatever) on the dollar now and go away or take a chance on what they might get out of his estate. If you do this, be sure you get a written agreement from them stating that the payment is in full and final satisfaction of all debts he has with the company, blah, blah, blah. Just a thought. Another thing: a lot of the forms (POA for health care, POA, declaration of guardian, living will) are just that: forms, and many hospitals and other places (county law libraries, state law libraries, law school libraries) have them and you can copy and draft one up yourself. If you are not comfortable with that, many counties or cities have a legal aid and/or elder lawyer aid where you can meet with an attorney for a reduced fee. Take a SHORT list and DON'T GAB! Stick to what legal issues you need to discuss and leave the medical discussion for the docs and everything else for us here. We're free and no appointment needed! Good luck. |
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FYI the POA is important because most insurance companies, etc. won't even talk with you unless you have a POA. They claim they have to follow the HIPPA laws which are supposed to protect privacy. I had to give one pharmacy my credit card so dad's meds could be charged on it. At the end of the year when I asked them to send me a statement for the charges on my card they refused to do it and told me they couldn't do it because "I wasn't the patient." Also, Social Security and the VA refused to accept my POA. If you do things the right way (vs. just forging his signature) Social Security will require you to be named Payee for the checks to be directed to you so you can pay his bills. I had to have a social worker at the hospital during one of dad's hospital stays vouch that he couldn't handle his affairs before Social Security would name me as Payee. If you ask that of the VA, the VA will open a file and will stop benefits for months while they determine if someone else should receive the veteran's benefits for the vet's behalf. If you are relying on that money for the vet's care you could be out of luck for no telling how long so I was told so long as you can get some type of a signature out of him--do it. I know this sounds like its nuts--but it's the government for you. Also when I tried to sell dad's truck, Carmax wouldn't accept the POA unless it had the VIN on the POA itself. They said that was necessary since they would move the car across state lines. I told them if I could get that, I wouldn't need a POA because he could sign the car title. If you are in a position to get a POA...make sure you know what needs to be handled and if a POA will be accepted or if something else is needed and try and get whatever that something else is set up in advance if possible before you need it. I thought I had a POA so I was okay...but I was wrong. |
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| I was fortunate because everyone accepted the POA. I was also very good at forging my husband's signature. I didn't worry about going to jail because at the time it sounded like an option for rest. The other thing that worked was when they insisted upon talking to him I would put him on the telephone where he would talk jiberish. They then were more than happy to speak with me. It also worked for soliciters. Seriously this just points out the fact that you need to have all of this in order BEFORE the problems arise. So many people put their heads in the sand and pretend as if nothing is ever going to happen to them and then it is a real mess when it does. I have all of this ready for my oldest son if and when it is needed. I have talked to him about it and I feel better knowing I will not leave them with a mess. Get those POA and medical directives in order people! |
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That all sounds very discouraging. I'm sorry about your problems. Advice about Social Security -- You can get his check direct deposited into whatever account, and you can do it on line so there is no hassle about signatures or confidentiality. I used this to change my dad's direct deposit from his old checking account to his current one that has my name on it also. Obviously you would be doing this for his benefit. Here's the link. http://www.ssa.gov/deposit/howtosign.htm |
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Thanks again, everyone, for all the good advice, especially the bit about Social Security, susger8. Please, keep it coming!  But I have to tell you, WitsEnd, that my experience with the VA has been very different. I spoke with a lady for the Southeast Region, and she made it clear that the best thing to do is to establish a VA file record of having him monitored, because, as she put it, "you'll never know what will happen in 2 or 3 months." The purpose of establishing a file on him is precisely to assess his dementia at the outset (which is right now) and note his progression (or regression, actually). She gave absolutely no indication that at any time his benefits would be suspended for any reason. At what time did they stop benefits while they determined if someone else should receive the benefits? This sounds like something I should bring up with the VA when I finally turn in to them all the forms they sent me to fill out. |