Am I Technically a 'Caregiver' in the True Sense of the Word?

suziequeFebruary 11, 2011

Hi everyone -

My mother, in her 90s, doesn't live with me. She lives in a "retirement community" - not assisted living, but they do take all meals in a dining room, the staff cleans her apt. once per week, there are plenty of activities, although she doesn't choose to participate in many. So - she's not in my home, which seems to be the main situation for most on this board, from what I see.

WHen I look through the web, "caregiver" seems to apply only to those whose relative lives with them. The moniker doesn't matter to me; I'm just wondering how to look for what I'm looking for!

I have sole responsibilty for my mom when it comes to her socialization (she has no friends left and isn't interested in making any, and her whole world is me, which she reminds me of continuously), health-wise (watching for changes/ailments, etc.), appointments, etc. etc. She is incredibly able-bodied for her age, and her memory is fair, but getting worse quickly.

I have incredible respect for those of you and all people who care for their relatives in their homes; I don't know how you do it and my hat is off to you. My situation is, obviously, very different, but I still am drained and spent. I love her very much and am not complaining about what I do, but it works on my emotions, energy level, and life in general (I'm often too emotionally and physically tired from a more-than-full-time job, long commute, and my care giving to do more than lay on the couch with the clicker. Of course, that is a self-fulfilling cycle. I find myself emotionally "down" and lonely (I don't have a family of my own).

I guess what I'm looking for is some advice as to how to interact with others who might be in the same situation. I've thought I should find a support group, but since my mom doesn't live with me I don't know that I'd fit in.

Any thoughts?

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YES! You are absolutely a caregiver. I work with a seniors' agency as a counselor, and we have had CG support groups off and on. I started in the group when I was in the same position as you, and after Mother died I went to work for the agency and wound up leading the group as well as doing one-on-one counseling.

I moved my mother here from 725 miles away when she was 92, and she was in a similar senior complex until she died 3-1/2 years later. I thought it would kill me after a while, but the last year was the worst.

I have a busy day today, so can't stop and type a lot more right now, but will add more during the day. But I just want to reassure you that yes, you're among company here, and you are a true caregiver.

    Bookmark   February 11, 2011 at 10:24AM
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Thank you, sushipup (nice to see you over here from the KT! :-) ). Sometimes I feel guilty or like a wimp when I get to feeling overwhelmed and down, because my situation isn't nearly what so many others are. But it's real and it is a weight (not a burden, but a weight).

I appreciate your empathy.


    Bookmark   February 11, 2011 at 10:29AM
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There are probably a lot more of us out there out there then one would suspect. Though I don't live with my Mother I basically take care most of her needs as she chose to live in her own home. I do have my husband's support and that is what has helped me get thru my days. Because you have no family I think a support group would make a world of difference.

    Bookmark   February 11, 2011 at 4:31PM
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I can identify. I have been there (for the last 10 years), and still am, except my mother is now in the severe stages of Alzheimers/dementia, after breaking her hip a month and half ago. I have been in grief for a long time--that is what most people you talk to will not acknowledge if they haven't been through it--and all the other demands on you are certainly very draining.
Have you become her legal and health care power of attorney? If not, do so ASAP. The details of all the legal and financial and medical aspects are exhausting. And when you call someone to take care of her affairs, expect to be put on hold even if you have POA and then think "I could have been with her instead of waiting on the phone!"
I wish I had found some kind of support group, but the one I went to was worthless. I needed to talk to people going through this, not hear platitudes ('Take care of the care-giver'). I had many specific questions and wanted to hear what others had done. So I made some mistakes, too complicated to list here. Please email me if you think I can help.
Good luck and hang in there, and give yourself a break; don't feel guilty about relaxing in front of the TV!.

    Bookmark   February 11, 2011 at 6:34PM
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Phew. Thank you all. I admit that I have felt guilty or like a whiner, as I'm not a "resident, full time" caregiver. I don't know how some of you do it. But I'm grateful for the support voiced.

Andreap, yes, I am her POA and health care proxy; that's all taken care of (through lessons-learned around the time of my father's illness and death). And you're so right about the platitudes!!! Yes, I want to ask specific questions, vent a bit, laugh with others about the things that happen that many would think shouldn't be laughed at, etc. I think that the ability to talk with others will give me renewed strength.

Finding that here is nice - again, thank you all.

    Bookmark   February 11, 2011 at 7:08PM
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I was a full time in-home careiver for my Mother with Alzheimers from mid 2001 until she had to go into a nursing home late in 2007. The home was close so I saw her every day, going at noon to help her with lunch, etc. In a sense, the caregiving doesn't stop once the loved one is out of the home - the financial things don't stop, medical decisions don't stop, the worry and concern don't stop. It is mentally and physically exhausting. Even though I had a demanding career for 32 years, that had nothing on being a caregiver.

After Mom passed away, I joined two caregivers support groups. In my heart of hearts, knew I had done all the right things, had done the best I could, but I needed some validation; to know I wasn't alone in finally allowing myself a sense of relief and release and how to deal with the emotional "let down" that comes when no longer being in the caregiving position.

We had good moderators and often guest psychologists, nurses, social workers, lawyers, doctors specializing in geriatrics speak and field questions and concerns. Both groups had a nice mix of people, both men and women, young and old. Nothing was taboo, no subject was off the table - and it stayed in the group.

No one wanted platitudes, but many did want to know it was okay to take a time out to try and get your equilibrium back; have the strength to take some me time. No one wanted to sing Kumbaya in a big prayer circle. Dealing with a loved one slipping away bit by bit never seemed eased by prayers and platitudes. Asking for grace and perseverance in the constant grieving for our loved ones while they were still alive was no doubt something we all did and do privately anyway.

    Bookmark   February 12, 2011 at 2:27PM
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Suzieque, don't forget the financial arrangements. Most banks are not happy with POAs, unless you use their own forms. Make sure that you are on all her bank accounts. Remember that a POA expires with the death of the person. Does she have her will in order? Are her assets in a trust? Now's the time to make sure.

In Mother's last two years, she started obsessing about various things. Drove me crazy. She would balance her bank statement several times a day. She thought that if the SS auto-deposit was made on the first of the month, and also later on the 31st (for the next month), "they" were going to take it away from her. She became less and less able to understand things like that. I finally had the bank change the address to my home, plus her social security address, because she'd also stress about any piece of mail that she would get.

I had trouble lying to her, but I learned how. I had a long talk with a neighbor of hers who was a retired nun and school teacher/principal about lying. Talk about taking me back to my childhood! But Sister Noreen was a wonderful help to me. See if you can find someone like that to unload on. Someone discrete who won't blab, but will let you talk. And let it all out.

I had to jiggle her savings. She had two CDs that paid a good rate, about 6% (those were the days!), and she had about $30 per month too much income to qualify for a rent reduction. So I took out enough from one CD and opened another at a lower rate, reduced her income and saved her more than $300 in rent for the $30 lowering of her income. There is NO way she'd ever have been able to follow that maneuver, and she'd have fainted to have learned that she was losing income, but it was the right thing to do. But I had to lie to her, naturally. I was completely stressed at that time.

I learned to set boundaries with Mother. She might call and say that she needed something from the store (her meals were provided), and I learned to NOT drop everything to go shop for her. I learned to not be available every single day, even if I actually was free. Of course, I was available for an emergency, but I learned to put her off a little. At least it gave me a sense on control in my own life, if you know what I mean.

Figure out something to do just for yourself on a regular basis. Take a long walk, an exercise class, a massage, go to a movie, whatever you can do just for yourself. Turn off the cell phone for an hour or two.

I'll think of more hints that you might be able to use, but I do recommend finding someone to talk to.

And keep posting here, of course.

    Bookmark   February 12, 2011 at 7:30PM
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I feel such a sense of relief just reading your notes here - thank you.

duluth, "..knew I had done all the right things, had done the best I could, but I needed some validation; to know I wasn't alone in finally allowing myself a sense of relief and release and how to deal with the emotional "let down" that comes when no longer being in the caregiving position.". Yes - you get it.

Sushipup, fortunately, the will was done a couple of years ago (my father, when he was alive, had done a couple of homemade wills; we had her's redone formally). I did have my name on her bank accounts, but the attorney suggested that that wasn't a good idea. He said that, if I were sued for anything (God forbid), such as a car accident or whatever, my mother's bank accounts would be considered my assets and could be taken. So the POA was recommended instead. Don't know if that's the right answer or not, but I trusted the atty.

Yes, my mother worries about money constantly. She doesn't do her bills and most bills don't even go to her; I take care of them. But regardless of what I tell her she worries.

I'm health care proxy, as well.

And yes - I understand the little white lies; I have to. Hard to explain to someone who hasn't been there, but I'd rather fib a bit than worry her or cause her distress.

I do have a minister that I trust and can talk to, but don't do so too much. Perhaps I should avail myself to that resource more. And I will now increase my search for an appropriate support group.

Be well, my friends.


    Bookmark   February 13, 2011 at 9:44AM
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Suzieque, about the bank accounts. Will you be able to pay her bills if she becomes incapacitated? How will you pay existing bills after she dies?

If you get sued, it is a long long process, and someone would have to get a court judgment in order to attach those bank accounts, and that will take a long time, and will also be able to be challenged in court. If it is obviously your Mother's account, no it won't be attached. Now, I am not an attorney, heavenforbid, but I think you should be on the account used for bill paying. Perhaps not on brokerage accounts or large savings accounts, but on her regular bill-paying checking account, yes.

For the other accounts, the banks will work with you when you present a death certificate.

    Bookmark   February 13, 2011 at 10:50AM
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Definitely get on the bank accounts. My mother and I are joint account holders on all of granny's funds. Granny is the primary holder, her SS is on them, but any one of us can sign individually for checks, transfers, or closing accounts. I've been handling her finances for years, long before the dementia set in, so there was no problem with granny resisting or resenting it as the dementia progressed. I have all bank documents mailed to my house, although the bills still go to her address. I pay everything possible via online billpay so there's no need for anybody to sign a check.

I submitted IRS Form 2848 Power of Attorney and Declaration of Representative, listing mom and myself as reps so we can sign tax forms if needed. However, if all the required info is known, most tax returns can be done via (free) online filing.

    Bookmark   February 15, 2011 at 5:36PM
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Suzie Yes you are a caregiver and i can't really offer more than what the others have said. My mother wanted me to be her new best and only friend and I was to do nothing go no place without including her. I finally snapped and we had a "talk" and I explained to her in great detail why I needed my own space, my own life and I was going to have it without her being part of that part of my life. And it was going to happen whether she liked it or not. I found my outlet away from my mother by joining a quilting group. She has nothing to do with that part of my life. I have new friends that are not part of her world.
So my advice is for you to stop thinking that everything she thinks of is now your new problem. I learned to sort out what is and is not necessary. What I can fix and what I can't. You can to. You must!!
I just brought forth a past post on this issue that you might find helpful.
hope you are still doing well with this issue

    Bookmark   March 4, 2011 at 7:39AM
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