Life and how to live it
- Thread starter MaxCoke
- Start date
Well....that sucks. Wouldn't wish that on anyone.
Anyone.
You know the medical reality....so as far as "hope" goes - all I can tell you is to search out local support groups, or just find outlets when/where you can, because there's not much else you can do, except go crazy from the load. From my experience, its frustrating to be told "there's nothing we can do" no matter if the question if medical, financial, or whatever.
Not in your shoes, but went through a little with my dad.
I wasn't his primary caregiver though.
He drove up until the last 6 months.
Knew family right up to the last week.
Rule No. 1 - get help with giving the help. Being a caregiver is hard. CANNOT be done alone. Don't try to Rambo this. Every caregiver needs some time off, so you need to have others in the game. Its a team thing, and you gotta act like teammates. Somebody goes after a teammate, slug them, even if your teammate is in the wrong. Even in rural areas, there will be support groups willing to help. Check the churches. But introducing a new caregiver into the mix takes time. Start early so your folks can get used to them.
Rule No. 2 - don't beat yourself up over the sad. My old man had a great life. I bet your folks did too. Death is part of the deal. It all ends for everybody. Dementia is an unfair way out, but it is what it is. It isn't changing and it isn't fair to you for me to blow smoke up your ass about how it gets better. You'll get angry. That's fair. Just learn to recognize it so you don't let it eat you or let it let you take it out on the wrong folks. Find some way to be aggressive for fun. Hit a heavy bag. Chop wood with an axe. Smack the crap out of some Purdue fans. See it. Hit it.
I'm a church guy too, sort of. If yer not, that's OK too. If you feel like it, find one anyway. Sneak in the back one night and talk with The Man alone. Or by a lake. I never feel closer to The Man than by a lake.
There's honor in what you're doing and what you're going through.
Doesn't mean its easy.
It isn't.
But it matters.
And blame Obama.
That always makes me feel better.
After its all over, let me know.
I'll pour one out for your folks.
You got this.
http://www.helpguide.org/articles/caregiving/support-for-alzheimers-and-dementia-caregivers.htm
I wasn't his primary caregiver though.
He drove up until the last 6 months.
Knew family right up to the last week.
Rule No. 1 - get help with giving the help. Being a caregiver is hard. CANNOT be done alone. Don't try to Rambo this. Every caregiver needs some time off, so you need to have others in the game. Its a team thing, and you gotta act like teammates. Somebody goes after a teammate, slug them, even if your teammate is in the wrong. Even in rural areas, there will be support groups willing to help. Check the churches. But introducing a new caregiver into the mix takes time. Start early so your folks can get used to them.
Rule No. 2 - don't beat yourself up over the sad. My old man had a great life. I bet your folks did too. Death is part of the deal. It all ends for everybody. Dementia is an unfair way out, but it is what it is. It isn't changing and it isn't fair to you for me to blow smoke up your ass about how it gets better. You'll get angry. That's fair. Just learn to recognize it so you don't let it eat you or let it let you take it out on the wrong folks. Find some way to be aggressive for fun. Hit a heavy bag. Chop wood with an axe. Smack the crap out of some Purdue fans. See it. Hit it.
I'm a church guy too, sort of. If yer not, that's OK too. If you feel like it, find one anyway. Sneak in the back one night and talk with The Man alone. Or by a lake. I never feel closer to The Man than by a lake.
There's honor in what you're doing and what you're going through.
Doesn't mean its easy.
It isn't.
But it matters.
And blame Obama.
That always makes me feel better.
After its all over, let me know.
I'll pour one out for your folks.
You got this.
http://www.helpguide.org/articles/caregiving/support-for-alzheimers-and-dementia-caregivers.htm
My mom was diagnosed with dementia after her last stroke. We watch jeopardy together and do the LAT crossword together every single day. She is more lucid now than any doctor thought possible.
I don't mean others should expect the same, but I don't think hope is always groundless.
I don't mean others should expect the same, but I don't think hope is always groundless.
Well...I read "dementia" and my mind immediately jumped to Alzheimer's...and the two aren't the same. Dementia is one of a myriad of symptoms of Alzheimer's, but it could also be one that occurs due to cough due to cold (or more likely flu) in elderly people, definitely stroke or a TIA (mini-stroke or transient ischemic attack, which my father had in addition to early-onset Alzheimer's), or a bunch of other conditions. (I'm not doctor and I didn't stay at a Holiday Inn Express last night, so....)
Regardless, I'm going to reaffirm that hope exists - it may not be apparent, but its there.
MaxCoke - keep the faith, and as has been said - get help. You don't have to handle it alone.
And music.
Fill the joint with music. All the time. All kinds. If it'll make a toe tap, play it.
I'm dealing with something similar. Both parents are eighty years old. My mom is now blind. My dad has been diagnosed with "Moderate Cognitive Impairment" which means if it happened 15 minutes ago, it never happened. Except he has retained his long term memory. When we visit he inevitably asks Mrs. McHoop how her mom and dad are doing. He's been dead three years and she died last September. I had to coax him to shave and shower yesterday. After five minutes in the bathroom, he came out clean shaven. I asked him if he had showered and he replied "Oh! Was I supposed to shower?"
We hired a home care attendant to come in daily to dress and bathe my mom, do housekeeping, fix them breakfast and dinner, etc. If it wasn't for this, we would be having a tough conversation about a nursing home.
Here's link that will help you; especially if you're here in the Indy area. If not, see if there is something similar where you live....
McHoop
http://www.cicoa.org/about-cicoa/county-councils-on-aging/marion-county-coa.html
VanPastorMan
Hall of Famer
Don't sweat the small stuff. If they forget things they did five minutes ago don't agonize over it. Just go with it. As the dementia gets worse you have to think about living in the now and not in who they were. Enjoy them even if they don't know you. It's allright because you know them. Your memory will have to suffice for all of you. Hang in there my friend.
I haven't seen it yet and don't know the name of it (big help I know), but there is a critically acclaimed doc out on that very subject. Music really helping dementia patients.
Max, where do you live?
My dad died 5 years ago last week, and one of his issues the last 3 years of his life was loss of short term memory - a kind of dementia. There are a number of stories I could tell you, but I'll give you this one; in December, 2008 my mom and I were talking about the impending GM bankruptcy and other bad economic news, and my dad was in the room. He was in his own little world . . . and all of a sudden he got a little of what we were talking about. He said "GM goin' bankrupt?" He laughed derisively . . . and then he said "GM ain't goin' bankrupt. Y'all are crazy." We didn't laugh in front of him . . . but we did laugh later. It's OK . . . no, it's necessary . . . to laugh when things are funny. It's not disrespectful to the one with dementia - my dad wasn't wholly there, after all - and it does allow the caretakers to confirm their own grounding in reality. Otherwise, it'd be all too easy to lose that grounding.
Advice:
Find and talk to an eldercare attorney. (That's why I asked about where you live. I can help you look for one locally, or at least reasonably nearby.) They can help you navigate the options for governmental assistance: VA benefits if your mom or dad is a military vet during combat periods (those are specifically identified under VA regs), perhaps skilled nursing care under Medicaid if that's what is needed.
Find and talk with someone who does assessments of the condition/needs of the one with dementia and who can recommend appropriate support services.
But above all else, call hospice. Not all hospice care requires that a person have a prospectively terminal condition; sometimes all it requires is that the person's condition is such that they can't take care of themselves and there's no foreseeable chance of improvement in that condition. My mother was 82 and the primary caretaker of my father when his dementia was diagnosed. (When she told him about his condition, she said that he was getting to the point where he wasn't going to be able to remember, and in response he wailed "Not remember!!! I don't want to not remember!!!) She remained his primary caretaker for the next 2 1/2 years . . . until she and I took him to the VA nursing home together . . . (that's another story . . . and more wailing . . . "You're signing me over?!?!!!". No human being has ever felt more betrayed than my father did when his most trusted confidante of 67 years and his own son moved him into the VA . . . .) The only way she got through all this was because she got great help from hospice.
You are not your role. Your parents are not who they are presenting themselves to be now, and unfortunately they never will be. You take care of them to honor who they used to be, and out of respect for your own capacity for compassion and care of another. But you also need to respect your limits, and allow others to enter this new world to help you get through this. (BTW, the Stephen Hawking movie A Theory of Everything has this as an important element of Hawking's life story.) When you come out of this - and you will come out of it - you need to do so with both that self-respect and yourself intact. That will require accepting the fact that your heart will be broken over and over, and that you must let it heal over and over as well. It's possible . . . but only if you're willing to acknowledge your limits.
All the best to you dude . . . and check in with us about how it's going, please.
My dad died 5 years ago last week, and one of his issues the last 3 years of his life was loss of short term memory - a kind of dementia. There are a number of stories I could tell you, but I'll give you this one; in December, 2008 my mom and I were talking about the impending GM bankruptcy and other bad economic news, and my dad was in the room. He was in his own little world . . . and all of a sudden he got a little of what we were talking about. He said "GM goin' bankrupt?" He laughed derisively . . . and then he said "GM ain't goin' bankrupt. Y'all are crazy." We didn't laugh in front of him . . . but we did laugh later. It's OK . . . no, it's necessary . . . to laugh when things are funny. It's not disrespectful to the one with dementia - my dad wasn't wholly there, after all - and it does allow the caretakers to confirm their own grounding in reality. Otherwise, it'd be all too easy to lose that grounding.
Advice:
Find and talk to an eldercare attorney. (That's why I asked about where you live. I can help you look for one locally, or at least reasonably nearby.) They can help you navigate the options for governmental assistance: VA benefits if your mom or dad is a military vet during combat periods (those are specifically identified under VA regs), perhaps skilled nursing care under Medicaid if that's what is needed.
Find and talk with someone who does assessments of the condition/needs of the one with dementia and who can recommend appropriate support services.
But above all else, call hospice. Not all hospice care requires that a person have a prospectively terminal condition; sometimes all it requires is that the person's condition is such that they can't take care of themselves and there's no foreseeable chance of improvement in that condition. My mother was 82 and the primary caretaker of my father when his dementia was diagnosed. (When she told him about his condition, she said that he was getting to the point where he wasn't going to be able to remember, and in response he wailed "Not remember!!! I don't want to not remember!!!) She remained his primary caretaker for the next 2 1/2 years . . . until she and I took him to the VA nursing home together . . . (that's another story . . . and more wailing . . . "You're signing me over?!?!!!". No human being has ever felt more betrayed than my father did when his most trusted confidante of 67 years and his own son moved him into the VA . . . .) The only way she got through all this was because she got great help from hospice.
You are not your role. Your parents are not who they are presenting themselves to be now, and unfortunately they never will be. You take care of them to honor who they used to be, and out of respect for your own capacity for compassion and care of another. But you also need to respect your limits, and allow others to enter this new world to help you get through this. (BTW, the Stephen Hawking movie A Theory of Everything has this as an important element of Hawking's life story.) When you come out of this - and you will come out of it - you need to do so with both that self-respect and yourself intact. That will require accepting the fact that your heart will be broken over and over, and that you must let it heal over and over as well. It's possible . . . but only if you're willing to acknowledge your limits.
All the best to you dude . . . and check in with us about how it's going, please.
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MTIOTF (and maybe others) mentioned the need for music in dealing with folks with dementia. A friend of mine has been in the business of doing assessments and recommending solutions for old folks for the last 18 years (unfortunately in your case, only in the Atlanta area), and one of her solutions is a set of DVDs that are designed for visual and audio stimulation for dementia patients. Here's a link to her website: http://www.solutionsforseniors.com/. Hopefully it - and maybe the DVDs - can prove helpful to you.
If you have siblings who live near you and your parents, better get them to share
some of your workload.
some of your workload.
Thanks to all that responded with insight and advice. Yesterday I got a little overwhelmed. I get so selfish sometimes which leads to guilt. I find myself thinking of outcomes that should not be thought.
Since my comment was very short and probably only marginally helpful, let me add something else that I think is very important to remember.
The thing about my mom's stroke (which, FWIW, was caused by a fall; that's actually a thing that happens) is that it happened only a year or two after my dad passed. I was still finishing law school, and unable to move home. Luckily, my uncle still lived here at the time, so he helped in the evening, but my mom was alone during the day. I had to pay for a nurse to visit her during the week. My sister has a large family, and although she lived close, could not help as much as I thought she should. We got in at least one very heated argument about it.
It's very important not to let the stresses create divisions among family and friends, because everyone will need to pitch in and help.
And don't feel guilty about recognizing how difficult it is. For many of us, we feel like taking care of our parents in their old age is a moral imperative. That doesn't mean you should feel bad about having your own feelings, though.
