My parents don't have dementia, but, I do care for my cousin, who I have witnessed progress to Severe/Late stage dementia. It really causes you to think about it more than people who don't encounter it within their family.
If I forget something, I think about it a little more than an average person...like, oh no, I hope that's nothing serious. I also take coconut capsules and try to stay as healthy as possible, especially since I am a Type I diabetic. I keep my blood pressure down and see my doctor regularly to monitor my health. I'm joining my local Y and am returning to working out after an ordeal with a back injury a few months ago.
I'm going to work experts on the financial matters and leave those documents with a family member and a trusted attorney. I'm exploring my DPOA, because, it really is a huge job. It really places a huge responsibility on the one appointed.
I'm also updating my Advance Medical Directive to instruct my family, IN CASE OF DEMENTIA, to have me placed in AL or MC when it's not feasible to keep me in a home. I may not realize my condition by that time and my TRUE wishes are to not bring anguish and strain on family members by attempting to care for someone who proves too challenging in the home.
I can't even imagine asking a family member to not have me placed. That might make sense if you are a senior, but your needs can be met in the home, but, with dementia and the accompanying disabilities, incontinence, confusion, fears, delusions, etc. It's just unfair to ask that, imo. Plus, I think that professionals would be better equipped to handle my needs.
I have toured several AL's and MC's and have a good idea of what I would chose. Of course, that may change as time goes by. I hope that if I were to be effected, it would be many years down the road.
In case of dementia, I'm asking for DNR, no artificial nutrition, no cancer screens....nothing but palliative care.
I am asking that they ensure that I get daily music of my liking, because no matter what condition I'm in, I know that music feeds my soul and I need it.
If anyone can think of anything else, please let me know. I want to take any potential guilt off of my family members, since, I know that it is so prevalent in caregivers.
Sunntgirl1, thanks so much for your response. I redid my will when my second husband died of stroke--he had mild vascular dementia for 5 years, but I could still manage him at home--just couldn't leave him alone and had to realize that he didn't always know what he was doing or saying. But now my first husband has more serious dementia and is in nursing home/memory care that is costing $10,000/month because he has to have a round the clock "sitter." I don't have any responsibility here, but my two children are at odds about what to do and what to tell him. I don't want them fighting over my care, and I certainly don't object to nursing home or whatever, and I have LTC insurance to cover if I don't live too long. My grandparents and parents died before they needed LTC. We all hope we will die before this happens to us, but that doesn't seem to be the case anymore, perhaps because of the preventive care and healthy diet and exercise we follow now.
Arleeda, the funds I have saved up for retirement and travel will now be earmarked for continuing care facilities. Be it for dementia or for any type of age decline issue.
I have no siblings nor any children, so I have to "purchase" caregiving, plus after dealing my very elderly parents, I just cannot put anyone through all that physical and emotional stress, which had aged me terribly.
My parents didn't get dementia until they were in their 90's, or if they did have it, they sure hid it well. But I doubt I will ever reach their age, as I doubt many of us caregivers will, as stress can shorten one's life. Thanks folks !! Oh well, I can't blame them as neither had to care for their own parents and had no idea what they were putting me through.... [sigh].
This wont be popular but I will end my life should this happen and I am aware of it. NO WAY will I stick around for what I have seen happen to others. And to think of having my kids witness me deteriorate and likely say and do things that would hurt them. Don't slam me for my truth - please. I am being brutally honest. It only pertains to ME and what I would not personally agree to endure. I weep daily seeing my mom deteriorate. I miss her yet she is still alive. It is as though she is gone.
Scaredtaker, I agree with you 100%. I say I will never let it get to that point. I just hope I have the ability to control the situation myself by whatever means I have available. I would never want to continue living with no quality of life. When I feel it's my time to go, I want to be the one to make the decision. You'll get no slamming from me. I understand.
Scaredtaker, I think I understand your attitude. My husband wanted to die the first months of his dementia. And yet he lived on with reasonable quality of life for ten years. He enjoyed seeing his grandchildren get older, some graduate from college. My mother was in a lot of pain -- I think that was more qol defeating than her dementia. But once the pain was effectively managed she seemed content.
The problem with planning to end one's life is that the course and severity of dementia really isn't predictable. So I'll pass on that option. But I don't judge you for it.
You know I've often thought about this and what I would do. It's easy to say to yourself now what you would do or want to do but when the time came do you really think you would have what it takes to take your own life. What if you tried and failed. Then what? Possible brain damage in addition to the dementia or worse? Then there is the moral argument. I've always felt that taking your own life was an unforgivable sin. I've always imagined people who take their own life's as being those troubled souls hanging around the universe long after they've died, stuck in a state of limbo.
Then, there is this. I've always had the feeling that dementia creeps up on people and when they get to that point where it's irreversible and they are dependent on others they aren't even aware of it. So, even if you had planned it out how you'd end it all, you may not even have the wherewithal to do anything about it anyway.
Sorry for being the voice of reality but that's the world I live in and I can't pretend it's not. I try to take good care of my physical and mental self the best I can and then leave the rest up to God. If you do not believe in God, I'm sorry for you but if you do then put it in his hands. He will take care of you.
Drive thru tonight on taco tuesday, she asked me to repeat my first item on the order. Fed up and already irritated, I said I forgot. Maybe forgetting will save me extra money on eating out in the future. I did not actually forget, but she did.
Its a tough one. I guess it would depend on how severe my condition was. I have this discussion a lot. I don't know what is worse sometimes losing my mind or losing my body. I think its so hard for any of us to see people we love lose their independence and become dependent on caregivers. I know its not something any of us want. I'm not really sure now after taking care of my dad. My dad was so proud and independent. Any loss of independence and he thought he would be better off dead. I don't know.
Poem by Dylan Thomas Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.
Though wise men at their end know dark is right, Because their words had forked no lightning they Do not go gentle into that good night.
Good men, the last wave by, crying how bright Their frail deeds might have danced in a green bay, Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight, And learn, too late, they grieved it on its way, Do not go gentle into that good night.
Grave men, near death, who see with blinding sight Blind eyes could blaze like meteors and be gay, Rage, rage against the dying of the light.
And you, my father, there on that sad height, Curse, bless, me now with your fierce tears, I pray. Do not go gentle into that good night. Rage, rage against the dying of the light.
I used to love that poem. I guess it still resonates for those who are struck down too soon, but for those of us caring for the truly old my thoughts are more "Please god, go gently into that good night. Rage no more, let go, embrace the dying of the light".
That is understandable Cwillie! For you, I have this Kenny Rodgers Song......... You got to know when to hold 'em Know when to fold 'em Know when to walk away And when to run...
My spiritual views do not include guilt or sin gershun and I read your reply to mine and found it to be judgmental based on your religion. The question was asked of individuals and while it is fine to state your personal decision, it is not cool nor fair to judge mine. You don't need to feel sorry for my beliefs or imaginings about what I believe or do not (I said nothing about your "God" or any GOD for that matter). Tolerance for difference of opinion means you won't have to insult nor denigrate other's system of beliefs while elevating yours.
Mm. The difficulty is with knowing when to let go of the rope.
And, I wonder. One could write a detailed letter to one's children setting out one's reasons, explaining one's decision and asking them to respect it. And no doubt on some levels they would do that, and they would understand. Would that relieve them of all guilt? Think they wouldn't blame themselves in any way for being unable to compensate for your fears, even though you wouldn't be giving them a chance to try?
"My mother killed herself rather than face dementia or burden us with her care." Not going to be a highlight of the eulogy, is it.
I must admit I haven't got much further with the planning than crossing my fingers and hoping I won't get it. Genetics is mostly on my side, as far as it goes. I think long term care insurance is probably the safest bet but my goodness it's costly if it fully covers anything that's likely to happen.
I wonder if we can sign up in advance to participate in clinical research? That would give our dementia some useful purpose even if we don't ever get to appreciate any warm fuzzies about it.
Seeing my uncle slowly losing his brilliant mind is my 1st and I hope my only experience with dementia.
I have a daughter and grandson (he's 4yrs) I don't want my daughter to have to go through what I'm going through with my uncle.
I'm going to look into LTC insurance and write out instructions with my attorney. I've had conversations with my daughter about POA and she doesn't think she can do it so I have 2 others that will do this, they are named and have copies of my POA.
Scaredtaker I can understand and agree with your decision.
""My mother killed herself rather than face dementia or burden us with her care." Not going to be a highlight of the eulogy, is it. "
Uh - it was a question asked of the forum. You can state how you feel and I won't tell you my opinion on your choices. The abov quote is ridiculous and truly manufactured to illustrate my personal choice in a very distorted, untrue light. My children would not be so callous to use the quote you propose as being representative of MY eulogy - should I even have a service!
You have an opinion on your life that's fine.
HOWEVER - Don't be rude and present mine as callous, crude or unkind - it's my opinion and you have no idea what my kids and I have discussed. I do know what it feels like to be disrespected for speaking my truth in a CAREGIVER forum and this is one of those times. Uncalled for
Funny, my husband and I were having this discussion. I said I'd take my life and he said "But I'd want to take care of you if you couldn't take care of yourself." So sweet but I know he feels the same way. If it happened to him he doesn't want to be a burden. We've joked about hopping on the Harley and driving off a cliff. LIke other said, how will we know it's time if we forget everything? lol But, first and foremost, I am trying to adjust my eating habits to stave off dementia. More healthy fats, less sugar.
If I forget something, I think about it a little more than an average person...like, oh no, I hope that's nothing serious. I also take coconut capsules and try to stay as healthy as possible, especially since I am a Type I diabetic. I keep my blood pressure down and see my doctor regularly to monitor my health. I'm joining my local Y and am returning to working out after an ordeal with a back injury a few months ago.
I'm going to work experts on the financial matters and leave those documents with a family member and a trusted attorney. I'm exploring my DPOA, because, it really is a huge job. It really places a huge responsibility on the one appointed.
I'm also updating my Advance Medical Directive to instruct my family, IN CASE OF DEMENTIA, to have me placed in AL or MC when it's not feasible to keep me in a home. I may not realize my condition by that time and my TRUE wishes are to not bring anguish and strain on family members by attempting to care for someone who proves too challenging in the home.
I can't even imagine asking a family member to not have me placed. That might make sense if you are a senior, but your needs can be met in the home, but, with dementia and the accompanying disabilities, incontinence, confusion, fears, delusions, etc. It's just unfair to ask that, imo. Plus, I think that professionals would be better equipped to handle my needs.
I have toured several AL's and MC's and have a good idea of what I would chose. Of course, that may change as time goes by. I hope that if I were to be effected, it would be many years down the road.
In case of dementia, I'm asking for DNR, no artificial nutrition, no cancer screens....nothing but palliative care.
I am asking that they ensure that I get daily music of my liking, because no matter what condition I'm in, I know that music feeds my soul and I need it.
If anyone can think of anything else, please let me know. I want to take any potential guilt off of my family members, since, I know that it is so prevalent in caregivers.
I have no siblings nor any children, so I have to "purchase" caregiving, plus after dealing my very elderly parents, I just cannot put anyone through all that physical and emotional stress, which had aged me terribly.
My parents didn't get dementia until they were in their 90's, or if they did have it, they sure hid it well. But I doubt I will ever reach their age, as I doubt many of us caregivers will, as stress can shorten one's life. Thanks folks !! Oh well, I can't blame them as neither had to care for their own parents and had no idea what they were putting me through.... [sigh].
The problem with planning to end one's life is that the course and severity of dementia really isn't predictable. So I'll pass on that option. But I don't judge you for it.
Then, there is this. I've always had the feeling that dementia creeps up on people and when they get to that point where it's irreversible and they are dependent on others they aren't even aware of it. So, even if you had planned it out how you'd end it all, you may not even have the wherewithal to do anything about it anyway.
Sorry for being the voice of reality but that's the world I live in and I can't pretend it's not. I try to take good care of my physical and mental self the best I can and then leave the rest up to God. If you do not believe in God, I'm sorry for you but if you do then put it in his hands. He will take care of you.
Maybe forgetting will save me extra money on eating out in the future.
I did not actually forget, but she did.
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on that sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
You got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And when to run...
I've said it before. I won't put my kids in my position.
I will do myself in before it come to that.
My parents never had to deal with this in their own parents, so they didn't know. I do. I'm not going down that road and dragging my kids with me.
And, I wonder. One could write a detailed letter to one's children setting out one's reasons, explaining one's decision and asking them to respect it. And no doubt on some levels they would do that, and they would understand. Would that relieve them of all guilt? Think they wouldn't blame themselves in any way for being unable to compensate for your fears, even though you wouldn't be giving them a chance to try?
"My mother killed herself rather than face dementia or burden us with her care." Not going to be a highlight of the eulogy, is it.
I must admit I haven't got much further with the planning than crossing my fingers and hoping I won't get it. Genetics is mostly on my side, as far as it goes. I think long term care insurance is probably the safest bet but my goodness it's costly if it fully covers anything that's likely to happen.
I wonder if we can sign up in advance to participate in clinical research? That would give our dementia some useful purpose even if we don't ever get to appreciate any warm fuzzies about it.
I have a daughter and grandson (he's 4yrs) I don't want my daughter to have to go through what I'm going through with my uncle.
I'm going to look into LTC insurance and write out instructions with my attorney. I've had conversations with my daughter about POA and she doesn't think she can do it so I have 2 others that will do this, they are named and have copies of my POA.
Scaredtaker I can understand and agree with your decision.
N
Uh - it was a question asked of the forum. You can state how you feel and I won't tell you my opinion on your choices. The abov quote is ridiculous and truly manufactured to illustrate my personal choice in a very distorted, untrue light. My children would not be so callous to use the quote you propose as being representative of MY eulogy - should I even have a service!
You have an opinion on your life that's fine.
HOWEVER - Don't be rude and present mine as callous, crude or unkind - it's my opinion and you have no idea what my kids and I have discussed. I do know what it feels like to be disrespected for speaking my truth in a CAREGIVER forum and this is one of those times. Uncalled for