Overwhelmed and scared

Discussion in 'I care for a person with dementia' started by Bear44, Oct 7, 2015.

  1. Bear44

    Bear44 Registered User

    Sep 28, 2015
    126
    USA
    Hello everyone,
    So glad to have found this forum.
    I'm 38 years old with 3 boys 4,8,and 10. I live in the USA. I have been "taking care " of my dad since my mom passed away 8 yrs ago. Ie, showing him how to handle finances, etc.

    Recently I finally was able to get him into the dr. They gave me a somewhat generic diagnosis of dementia. We had a scan done that didn't show anything significant. I take my dad Monday to a neurologist for some more definitive answers.

    My father is only 73 but seems to be declining fast. He can't finish a complete sentence or thought. And he gets really angry about it. I try to help with suggesting different things I think he may be talking about, if that fails I try to change the subject.
     
  2. Aragorn

    Aragorn Registered User

    Jul 23, 2015
    18
    Hi Bear - welcome. There's a lot of experience on this site and folks will help to the best of their ability. Stay in contact.
     
  3. Bear44

    Bear44 Registered User

    Sep 28, 2015
    126
    USA
    Thank you aragon.

    I'm trying to come to terms with everything. And trying to balance two households
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Hi Bear, welcome to TP
    I don't know what the rules are in the USA (despite my mum having been born there) but I have picked up a few things and that's that it's very different to the UK in terms of what the government will do to help you.
    There are quite a few posters on here in the USA so they may be able to give you some specific advise (advice in the UA I think) about what may be available.
    In the meantime (meanwhile to you) then just keep doing what you're doing, when you hit a problem just deflect it and move on, hopefully his frustration at losing track of what he's saying will pass but angry isn't good so helping him stop getting that way is all for the best.
    The early days with AZ are often the hardest, after a while life just slots back into a different groove and carries on, not as before just a new and different reality.
    We're all here to listen and say things, I hope you find what I've said a little help.
    K
     
  5. MothersCarer

    MothersCarer Registered User

    Nov 13, 2014
    72
    This is a wonderful place to come Bear44. I sometimes just read the posts feeling calmer when I find others have the same problems and the same reaction. It is scary so feeling scared is fine but, once you find out more about your dad's problems, you can ask what other do and just "talking" about it helps.
     
  6. Bear44

    Bear44 Registered User

    Sep 28, 2015
    126
    USA
    Ty, I'm here more for support of this awful disease. My father is financially secure so at least that's not a worry.

    I am trying to come to grips with it. My dad is one of those guys that did everything himself and now that he can't, it's been hard on him.
     
  7. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Well, we're all here to offer any help we can.
    K
     
  8. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Hi, Bear, and welcome to TP. I am sorry to hear about the situation with your dad. It's late here, but I couldn't just read and run.

    I am also in the States but aside from some legal and medical system differences, the support and advice here are super and it's been a huge help. None of the kind people here seem to mind the occasional Yank on the boards, so no worries about that!

    The first thing I suggest is go online to the American Alzheimer's Association at http://www.alz.org. There is information there, and also contact information for your local chapter, whether that's at the state, county, or city level. You can also call them 24 hours a day for the same information, or just to talk. 1-800-272-3900. Don't hesitate to call.

    Get the information about support groups in your area, as well as any local agencies that may be able to help you. This includes, but is not limited to, the VA (if your dad was ever in the US military), your local Area Council on Aging, Senior Centers, Senior Services organizations, dementia groups, Alzheimer's groups, support groups for caregivers (generally and/or specific to dementia in general or even specific types of dementia), social services agencies such as Jewish Family Services or Catholic Charities or Lutheran Family Services (who serve people regardless of faith), and I know there's more but it's all I can think of right now. There is help and information out there but you may have to dig at the beginning, to find it.

    Rule number one with dementia is that whenever help is offered, accept it immediately. Don't hesitate, don't say maybe, say YES.

    You have an appointment with the neurologist coming up, and that's great. Make sure to ask lots and lots of questions, and find out how to contact the doctor for all the questions you will have later on. As far as privacy and talking to the doctor goes, well, a neurologist who sees patients with dementia SHOULD understand the difficulties, but you never know. Remember that, no matter what HIPPA and all that other legal stuff says, YOU can always tell the doctor anything you want. They may or may not able to talk to you, but you can always talk to them. Many people here send, in advance of an appointment, a letter to the doctor stating all their concerns, observed symptoms, and questions. I'd take a second copy along with you and unobtrusively ask for it to be given to the doctor/put on your dad's chart.

    A sympathetic doctor may also obtain oral permission from your family member, and then talk freely to you privately. Or not, it depends, but you can always ask.

    Whether or not you get a clear diagnosis on paper may or may not matter. But if nothing else, you will want to get clear information from the neurologist about what is going on, and what that means both in medical and practical terms. Again, do not be afraid to get the information you need.

    On the legal front, if you do not already have Power of Attorney, run and do not walk until you obtain this. A good attorney will help you with this process. (It seems impossible to many people but it can happen! I've been there!)

    There's a lot more I could say but I am afraid I will have already overwhelmed you. This is a horrible disease and a scary situation for everyone. I'm so sorry. Please let us know how we can help you.
     
  9. Bear44

    Bear44 Registered User

    Sep 28, 2015
    126
    USA
    Thank you, I've been reading tons on here. It's nice to talk to people who understand what you are going thru.
     
  10. Bear44

    Bear44 Registered User

    Sep 28, 2015
    126
    USA
    Thankfully his gp is also my Dr and was my mom's too, ( i had poa for my mom) so he tells me everything.

    My biggest fear is my useless sister is trying to get my father to give her poa. [emoji35] she does nothing for my dad. I let her take over the banking for 6 months and she called me asking if I was using my dad's card, um no I would never do that. Long story short I logged onto the bank and found out her daughter was stealing his debt card! !!!!!! To the tune of $15,000! She is 50 miles away, I take care of all his bills, I'm there 7 days a week.

    I bring it up to my dad and he gets angry ( I'm sure it's scary for him) but I told him there was a reason he gave me poa for mom and not her. When my mom was dying in the icu for a month she only came up to the hospital 4 times.

    Any suggestions on the poa? I just want to know my dad is protected.
     
  11. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
    #11 JackieJames, Oct 8, 2015
    Last edited: Oct 8, 2015
    The Alzheimer # in the USA is a good one. Ask to speak to a social worker. They may not have one immediately available, but you leave your number and they DO get back to you within a day or two at most. I got a wonderful woman and it helped with emotional aspects of all of this. Also, she made herself available in the future, which is really good. If you get one that you don't feel is compassionate, you can always thank her. Call again and find another one.
    As to POA, I know there are forms online, but the issue is getting you Dad to sign. Since you are taking him to the Neurologist or perhaps his GP (if that is the one he trusts), perhaps, they can suggest that he sign it. It is good for all of us to sign one even when healthy, because you never know. Maybe that approach to it might help. You might add that to have one is to have some control over your life; rather than lose it. Just as a living will does that. Trust is big issue with the POA.
    As to your sister's daughter taking that money, that is awful. I am so sorry to read this. If you get POA, you will be able to take control so that this sort of thing does not happen in the future. You might report it to Adult Protective Services. Up to you.
    This site is heads and shoulder above all of them. Just read the reviews. I have tried several and this place has wonderful supportive caring people and has a gold mine of information.
    Yes, it is definitely scary and overwhelming. You are not alone. Note: You can download POA forms online free for your State. Google it. For information on how to get POA, try www.nolo.com/. Just go there and put in "POA" and many articles will come up. Also google "free POA forms for your State in the USA and print out a few copies. Good luck.
     
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    #12 Amy in the US, Oct 8, 2015
    Last edited: Oct 8, 2015
    Disclaimer: I am not an attorney or legal professional and cannot offer legal advice; nor can any contents here be construed as same. For legal advice, you will need to consult a accredited legal professional in your state.

    While JackieJames is correct, that you do not have to have an attorney to do the PoA, I suggest you consider it, especially if you are concerned about your dad being upset, refusing to sign, giving PoA to someone else, or family members who might, to put it mildly, try to cause problems. This may give you a measure of protection/recourse should there ever be any problems, and you would already have a working relationship with an attorney you could call in case of questions. I was lucky in that I already had access to an attorney whom I knew and trusted and had worked with; that may not be the case for you. However, your local area Council on Aging, as well as your local/state Bar Association, should be able to give you a list of attorneys in your area who specialize in Elder Law. You might also ask friends and business associates for names (maybe someone at your bank, any other attorneys you know, co-workers, clergy if that's applicable, social workers or therapists, et cetera).

    Depending on the state where you live, and what they call things, you will want both a Health Care Power of Attorney (what some states used to/may still call, a living will) which talks about medical care and decisions, as well as a Durable Power of Attorney, which is the document that gives you authority to act for that person and do things like, file income taxes, pay bills, deal with investments, handle bank accounts, and so forth. There may be other options in your state and a good attorney will know what you need. You may or may not also want your dad to write a will and depending on assets some type of trusts may or may not be recommended; again, talk to the lawyer.

    It's great that you are able to talk to the doctor; that will save you a lot of trouble. What I always used to do with doctor's appointments for my mother, since she didn't think anything was wrong with her and didn't want to hear about it, was that I would call the doctor's office ahead of time and leave a message for the doctor about my concerns and what I wanted to cover in that appointment. He would sometimes call me back before the appointment if he had any questions, or to tell me what he planned to do. Then he would always call me after the appointment so we could talk openly. Perhaps you can try some similar arrangement with your dad's doctor, to keep communication open.

    Good luck to you.
     
  13. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
    Amy In the US:
    I do not believe that I said you do not have to have an attorney; I did mention that you can download free forms as nolo (a legal site where you can get more information on the pros/cons of having a lawyer) because NOLO does charge you for the forms.
    Im not a lawyer either but I so wish we had one in the family. Getting through the mire of all of this ... it would certainly help. Best to all.
     
  14. Bear44

    Bear44 Registered User

    Sep 28, 2015
    126
    USA
    Ugh. So dad was extremely mean and rude today. Towards me and the dr, I was embarrassed by his behavior at the dr.

    I spoke to a few lawyers today about poa and I'm now nervous. I asked the dr if we could get a letter stating he was competent to get the poa down and the dr said he isn't competent.

    What do I do now?
     
  15. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    this will depend on the law in your state, but in some states, you do NOT need a letter from a doctor, or a doctor's statement, that a person has capacity and can do a PoA. Again, it depends, but in some states, the attorney can decide, yes this person has capacity to do this paperwork, or no, they do not.

    My best advice is find a sympathetic attorney, have everything ready to go, and then wait for a good day/moment/opportunity of some sort, and have the lawyer come to you and your dad with the paperwork. I know it sounds crazy, but it can happen.

    If you're not able to complete PoA, you may (again, depending on the law in your state) need to apply for guardianship.

    Don't give up hope. You clearly want to do what is right for your dad, and I applaud you for that!!
     
  16. Bear44

    Bear44 Registered User

    Sep 28, 2015
    126
    USA
    Thank you Amy.

    I can't believe I'm in the situation, I could understand if my sister actually did anything for my dad. ... I'm waiting for a call from our dr to see if he would back me up on taking care of my mom, and dad
     
  17. Bear44

    Bear44 Registered User

    Sep 28, 2015
    126
    USA
    I have made an appointment with a lawyer that seems very nice. I have explained the whole situation to her, she has said that she will have me leave the room and ask him a few questions for her own due diligence. I'm praying all goes well, as the dr has declared him incompetent. I'm so nervous of telling him of the appointment. He gets so angry when I bring it up. I think it's due to both my sister and I asking about it.
     
  18. JackieJames

    JackieJames Registered User

    Dec 31, 2014
    83
    USA
    #18 JackieJames, Oct 22, 2015
    Last edited: Oct 22, 2015
    edit
     

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