This is my biggest nightmare. The thought of my children changing my diapers is mind boggling. The loss of dignity terrible. I'm too old to develop early onset. I do have LTC insurance. I suppose I'm better off than some. Every time I forget something I start soul searching. Any one up to sharing their feelings?
I am not too old to develop EO. I do not have LTC insurance. I DO have a paternal grandmother who developed AD in her 80s, and a father who died of Parkinson's at age 76 after six or so years of decline. So I DO have some legitimate fear that neurodegeneration is not unlikely for someone of my paternal lineage.
I don't know if I'm yet soul-searching when I forget something, but I do wig out a bit. Then I have to patiently remind myself of two things: 1--I have always been absent-minded, and 2--I'm right on the verge of menopause, and it's messing with me a little.
I have two tentative plans:
Plan #1: I will rent or buy a boat, load it with food and comforts, plus some horse tranquilizers, and (leaving from the East Coast) head due east for as long as I feel like it. You can guess the rest.
Plan #2: (If I am either not up to plan #1, or decide against it.) Use the $ I will save by NOT placing Jeff too soon, and place myself. Way before my children need to take any action.
I will not leave 'em to decide for me, or suffer the torment of caregiver second-guessing.
I had lunch with some friends today. There were eight of us seated at a long table. Everyone was talking at the same time - the person at one end was talking to the person on the other end etc. It was rather loud. You would have thought we were teenagers rather than ladies in their 60's and 70's!!!! I was talking to Linda next to me when the waitress came up and started talking. When I turned back to Linda, my mind went blank - I could not remember what we were talking about!!!!
I don't have LTC insurance and with the economy and Claude's long illness, I am scraping the bottom of the barrel financially. How are my kids going to be able to care of me? I just successfully came thru a breast cancer scare. I have good medical insurance that would take care of medical bills, but nothing for the long term.
I also have told my children in no uncertain terms that they are not to try to care for me if I should start down the "dementia trail". I have LTC insurance and they were both by my side during the caregiving years with their dad. So, they are no strangers to the heartaches and heartbreak it is to try to care for someone who is changing before your very eyes. They know where I would choose to be placed and know that they have to be involved without being hands on....both are smart and strong and I have no doubts they will do what is right.
As soon as my husband was diagnosed with Parkinson's I got LTC insurance for me. It was too late for him. My maternal grandmother and one sister followed the same path--Alzheimers began in their early 80s, died of it in their early 90s. My mother has started down the same path. So I'm not too fearful of early onset (I'm 56), but expect to get it later. I do take coconut oil (and MCT oil), watch my blood sugar, and do some intense exercise, hoping to postpone it. It was one of the reasons I had surgery to correct my vision--I figured I would lose my orientation in the world a lot quicker if I couldn't see more than 8 inches in front of my face without glasses.
I'm hoping my care for my husband is a good role model for my children. I also plan to embrace living in some kind of continuing care community before I reach 80.
I would meditate on what's important for me to do while I still can and then go out and do it: contacts to reestablish, to say things that have to be said to friends and loved ones, do some good I've always meant to do but didn't get around to do . You name it, it's all individual. Live what remains of your life to the fullest. Emily, I too would consider that boat at some time.
Like all of you I hope I never get it, but there are much worse things you could get and have lots of pain. I have LTC and I have sufficient funds that I could be cared for in a home. I am already 78 so I kind of feel like I am lucky to be alive now and have good health. My only real worry is that something will happen to me before my dh. He has no one that cares for him enough to take care of him. He would have to be placed. He does have two sons, last year I sent the one son a letter explaining to him all the details of his father's illness and what would probably happen in the future. I have not heard one word back from him.
Who pays for a person if there is no one to take care of them and they have little or no funds?? Do they go to a nursing home??
This is a good question. I will try to set it up that I'm taken care of without my children's help, home care of some sort though the Community Health Care Centre. It would be great if one or more of my children were supervising that in some way, but I don't count on it. I don't know if it's the same in the States, but I believe that is it Canadian law that offspring are responsible for the care of their elderly parents; but all of us want to avoid being a burden. The boat sounds pretty good, all right; that would leave its own problems, though. It's like musical chairs. We'd all like to linger behind a chair we can grab in time. The name of the game is to just keep moving with the music.
I have had a talk with my son and told him that I do not ever want him living his life around taking care of me. I told him if I ever get to the point where I need taking care of to put me in the best facility he can find, make sure they are taking care of me and then go live his life. I told him that no matter how much I cry and fight against it to always remember what I am telling him now while I am of sound mind. That he is not to feel guilty at all.
Back to your question. If I found out I had Alzheimer's Disease I would live my life to the fullest I could while I could still think clearly and instruct my lawyer and doctor that I did not want any meds once I could no longer function on my own and to assist my son in finding somewhere safe to put me.
I have also let them know that I don't want anybody that cares about me in the room when I die. I want them to all step outside and let the doctors and nurses stay with me and once I am gone they are to clean me up and then anyone that needs to see me can.
Sounds good to me Anchor...that is just about the way I feel. I want to be cremated and my first and oldest grandson is going to have some of my ashes put in the shaft of his golf club and I will be on the golf course with him many times.
When DH had AD I bought LTC for myself. If kids had to care for both of us they’d be on the fast track to the poorhouse. As of now, I think my son & DIL would take care of me as long as they could, no matter what I say, although I’d prefer they have a CG for me at my home, I’d like to stay here as long as possible. Daughter might possibly place me, but she’d be an all the time, eyes on everything to see that I was always OK. My 90 y.o. sister has VaD & has a daytime CG. Her son is doing everything possible to keep her in her home, so the template has been established that’s the way to go, but one never knows. Otherwise, I’d just continue with my day to day life as it is as long as possible. I know from experience that chances are I’d have many good years before I got all that bad. I’m already have a DNR, and I'm elderly, so we’ll see. Bless us all,
I have a pending appointment with my estate lawyer to establish a pet trust. Even if I die before H I cannot depend that he would have the ability or the inclination to care for them. I don't mean this as a criticism, just that I am sure he would not do it.
My greatest concern is that at some point I should stop taking on "new" animals until I know they would not be left bereft.
As for myself, I am sure I will die alone. I have a DNR and DNI, as does H.
You know, all this time I have thought about me enforcing, or enacting this for H, but who knows, I could die first.
Assuming H dies first, I will do what I can to complete his wishes, but really have to think about who will enforce my wishes?
Excellent point!
What is the deal with Oregon? Is that really the solution for those of us who will most likely die alone?
I would probably end with suicide (if I don't forget!). My mom always said if she started forgetting like her mom did, she would shoot herself - problem is she forgot - her final years were not what she would have wanted. My oldest sister who was her caregiver did all she could to prolong our mom's life.
I have siblings but I doubt they would really care. My kids could care less, so they would not be an option. If hubby dies before I reach 62 I will have no income so here come the streets. If I can find a way to keep up the life insurance payments for the next 3 years and he should died in that time, then I would have some funds to live on until I can figure something out. After he is gone, I look for the years to be alone until I make some friends - which I have not had in years. My soon to be ex- DIL says she will be there but I won't hold her to it. She has to rebuild her life, hopefully someday she will find a man that will be a 'man' - one that will love and support her and she can share life with. But she was sexually abused by her father when a child so relationships are hard for her.
Oregon has an assisted suicide law abby which means doctors can prescribe a 'cocktail' of drugs, that if you so choose you could take that would kill you. First though you have to see psych doctors and have a terminal illness. Of people that are approved only a small percentage actually take advantage of it. Everyone against the bill said people would be committing suicide in mass if it passed but reality is they do not. The other thing is: if people on are on pain meds how hard would it be to save a pill now and then to build up your own lethal cocktail? I voted for it years ago because I got tired of spouses in their 80s and 90s going to jail because they helped their terminally ill spouse die. The law does not protect that spouse but now the ill one can get the medicines to take when they are ready.
JudithKB, do you play golf? I have never played golf with a lady. I have a friend that plays with the lady that lives next door to him and a friend of hers. He says from what he has seen ladies are very consistent golfers and play well. He says she beats him on a regular basis. I told him that didn't necessarily mean they were any good. LOL. I think they do well at golf because they don't have a big fat ego getting in their way so they aren't always trying to out drive every person playing all the time.
Golf is one of my enjoyments in life. I am not all that good, I hit between 95 and a hundred and something. The something can vary some what but I do enjoy it. I compete against my last score. That way I have a chance of winning but sometimes I kick my own butt. LOL.
If you ever get to Jacksonville FL bring your golf clubs and we can play a round. We have some nice courses here.
If anybody that plays ever comes near here and wants to play let me know you are coming a couple of days in advance so I can make arrangements to have someone stay with kathryn, bring your clubs, and I will make a tee time.
Sorry to dwell on this, but we all know why we would-- Charlotte, you say that assisted suicide is allowed in Oregon. I just checked--yes, to an extent. There is a provision that the patient must be able to administer the Rx to him/herself, and that the *prognosis must be 6 months left or fewer*! There's the catch. No dementia patients could carry this out by the time they reach the hospice stage.
That's a bummer, because seriously...much as I appreciate life and plan to make the best I can out of it...I completely support the right of a person with a diagnosis like AD to check out when she's ready.
Well, there's still Europe. Oregon was just a little more within reach. Having thoughts about this type of exit plan...just in case...is a bit of a comforting thought to me, and it's too bad we'd have to plan such a feat using sneaky means like pill-hoarding.
Believe me, I understand the reasons it's a tricky question, and respect the religious or other ethical objections.
Anchor: I have played lots and lots of golf and I was a fair to good player once. But, now I probably would not do too good. But, I loved the game and played 3 or 4 times a week. Since my dh became ill, we haven't been able to play. When my grandson was little (maybe 6 yrs old) the place where I lived always had this kids tournament and the pro gave a couple of days lessons to the kids and then they had a little tournament. My grandson always came to my house and stayed for the week and played. He now is teaching his son to play. We love talking golf. I still have my clubs and shoes and plan on playing some more golf when I have to place my dh. It is a great sport and a great distraction from some of the bad times one has in life
This is a funny kind of golf story. A very good girl friend who became very ill had this golf club, can't remember what the name of the club was called, but it was to approach the green with. She could put her ball on the green 95% of the time with that club. Well, the last time I saw her, she gave me that club. I worked for months trying to use that club. But, never could hit it like she did. But, when I took the club back to where I was living and I had to carry it through the airport...I had more people looking at me and smiling then I ever had in my life. Moral of the story...if you want to attract attention to yourself...just walk through an airport with a single golf club.
I think now that I have this woman that takes care of my dh one day a week so I can do what I want, I may get out my clubs and go to the driving range.
Charlotte if your dh goes before you are 62, there is a place for you here. Very likely mine will be gone before I am , (6 more years)
We can eat mangoes, coconuts, and brown rice. I am serious, I am not your family, but I would take you in in a moment. I too am in the same boat financially.
As to what would I do? So hard to say...because we would forget. But in this state of mind, I like the idea of getting in a boat with supplies for a few days, and going out to meet my maker.
I have no children, so I would totally be at peace with taking a little pill cocktail overdose. My mom had a friend that was terminally ill and she called the funeral home, told them to come in 30 minutes, wrapped herself in a big plastic sheet and shot herself. Pretty considerate! I cannot even bear to think about someone having to take care of me...
I have to admire the ladies...being in the middle of four sisters I was well trained...I will be 66 next month..my DW is 62. My admiration today comes from what I see as your ability to live life alone..and maybe even be prepared to pass alone. I believe life's for sharing..and I respect my vows. But the emptiness I feel each day..another meal alone..can be consuming. I've never been a patient person...this seems to me I've taking rambling to another level.
pretty serious topic here. after we have seen what happens in depth with our spouses its a horrible horrible way to go and quite scary to contemplate. . yipes. i dont know if i'd have the nerve to take my own life, but my plan would more than likely be to have a livein caregiver not a family member, as long as possible and hopefully die in my own home or with hospice with family around. and tell everyone to medicate me til i'm oblivious to surroundings. i would probably also opt for no other life sustaining meds to speed things along. i would not like a NH as an option but as a last resort. hopefully sooner than later there will be a cure in our lifetime.
also FYI. some life insurances do not pay if suicide is ruled cause of death. if you have family that depends on insurance it has to be accidental or natural! just a somber thought. ")
I do NOT want my kids taking care of me like I am my DH, so if I ever get a DX of dementia I will run not walk to the nearest NH or other care facility so that my kids don’t have to do this. Charlotte, if your DH dies before you are 62 PLEASE come & live with me! We have 2 extra rooms & I would love for you to have one. When my DH dies & we are still able we can travel around in your MH & use my house for our base. I’m just sayin’! (although I know Coco offered too & I admit Hawaii is much more tempting than Maryland!)
divvi good point about suicide negating insurance. My largest investment is my insurance plan.Something that would worry be about suicide is not doing it right and winding up as a veggie.
No kids and 1 sibling for me. She's older (not by much) but I would NEVER want her to take care of me...just not fair to her. If there's any money left after DH"s journey AND I survive him, I want a live-in caregiver, no meds and someone with the courage to let me go when it's time. If it's dementia, I won't remember to take the pills to end my life.
Have a really great party and then lights out. You only have to live this once to know you don't want to do it to anyone else. I do believe the next generation will change the laws necessary to make for a dignified exit. Everyone should have a choice, that's only fair.
Nora - I agree cause many times when I have been close to it that is one thought I have: how to make sure I am successful. I like the way 'Leisure Seekers' ends: run the hose from the tailpipe into the motorhome and fall asleep. Of course, the gas and carbon monoxide detectors would have to be disconnected.
I do not have life insurance on me - just husband. His only does not pay if done within the first 2 years.
Coco - I have never been to Hawaii. Husband spent two years there while in the Navy and wanted to take me but I did not want to go to 'tourist' Hawaii. I would rather Alaska which I have not made yet either. I have watched videos of 'real' Hawaii and that is the parts I would love to see: mountains, waterfalls, beaches, volcanoe, etc.
I think we all could pool money and buy us a town somewhere. It would be one of those communes for AD survivors! We could also be there while our spouses are on their journey.
Ladies, Can I go to Hawaii with ya'll? I have always wanted to see those really big waves that are at that one beach on the north side of the island for a couple of months a year. But I got to tell you I ain't a going if ya'll plan on taking the motor home.
I often have this dreamy little vision of us all meeting over here, you never know..
I live on the island of Hawaii, (called the BIg Island), the one with live spouting volcanoes. It is quite rural in most areas, we live way out in the sticks, about 75 miles to either Kona or Hilo.
Maui was where my dh was born and raised, and I lived there for short of 30 years. I like the space over here each island is quite different.
Why could we not have a caregiver get away? I can arrange all the details, ( moderate to budget accommodations, ), and for the ones that cannot afford to come, we will all pitch in.
Dream on, we have to have something to dream about.
What ould I doif I were diagnosed with Alz, or one of its cousins? I’d do all I could as soon as possible, to clear the decks and LIVE BIG! Do all I could to reduce the mundane demands of my day to day life, and please myself. That is, not to be irresponsible, run up unpayable bills, but stretch my days, my ways and means to make each day as full and meaningful to me as I can. From my earliest childhood I’ve lived “outside the box”, always having to look at each goal and then figure out how I could get there, because I could seldom do it the way most did. When neighbor kids ran down the hill of our yard to ride bikes on the sidewalk, I’d stop at the top, and roll down the hill, pick myself up and we’d ride. Through the years the goals have often been more challenging and I’ve met them. At this stage of my life, presuming my Caregiving days were behind me and my life were essentially my own, I’d eat breakfast for supper if I wanted, and dessert first. Though being sensible about my BP and Diabetes, I’d have that piece of cake if I really wanted to. I’d find a way to climb a mountain, swim in the Ocean, go camping again. I’d watch the sun rise and the sun set; stomp in puddles, and laugh at dumb jokes. If I wanted to sleep a day away I would. Or pull an all nighter reading a book. I try to draw or paint though I’m really bad at it, and forget singing, but I’d do it anyway. I’d spend time with my daughter and son-in-law and all their exotic reptiles, though I really prefer their cat. And, I’d spend time with my friends sharing the best of times remembering all we’ve been through together. If I plan it right, I’ll live so BIG I’ll use up all my days before Alz or its cousin (which ever kind) has the chance to really take over. Since I think outside the box, it just might be possible. Worth a try anyway. LIVE LOVE LAUGH
I think, above all, I like Charlotte's idea for the town or community. That is EXACTLY what I want right now, in my "before" status. Can you imagine this? It would have to be gated to keep our LOs from wandering off, but AD-proofed as much as possible, with flower and vegetable gardens, and a community room adapted for AD and caregivers. We spouses would have certain days/nights off by rotating schedule, and a couple or so of "floating" aides to give us longer respite breaks.
It would, of course, be Crazy Town to those not intimately familiar, but my friend starting telling me I lived in "Topsy-turvy-ville" a few years ago, so it's nothing new to me.
In aerobics class this morning we were talking about how fortunate we were to be living in our community. As the community ages some residents become more needy. Dementia is well recognized and not shunned. If a sitter is needed or transportation needed we just do it. I agree-care villages would be ideal-but where to begin?
Carosi, with her ultimate wisdom and practicality, has given me a great plan if I ever get dementia. When she mentioned thinking outside the box, I was thinking of the box itself...Now I know UPS, Fedex and the Postal service goes almost everywhere in the world, so I am building myself a real box, printing labels, and I then am leaving specific instructions for my care. Basically, I am to be placed in the box, and shipped to Carosi. When she opens the box, I will be able to probably stay until she can get me back in the box and shipped out to Nikki. Nikki will then have to figure out the same and ship me to Emily (who will smartly refuse the box and have it returned to sender). Nikki will then readdress the box and I will go to Ann...then to Bluedaze, Joan, Linda MC, Charlotte, Mimi, Shannon, Divvi, Weejun, and then I go overseas to Hawaii.....All I ask is that I tour the northern states in the summer, western states in the fall, southern states in the winter, and Hawaii for the rest of the time.....I think I would be guaranteed the best caregiving, and I would probably enjoy having dementia.....I think I could become a professional dementia patient....
Phranque, can't help but smile....as I read your post!!!! thanks, for I needed a chuckle.....many times, over the years I've asked if there is really, really a humorous side to this devasting disease?????? hmmmmm
Additional comment: I for one try to "think positive" and pray I do not get dementia!!!!!!! I know I can hear folks saying "nothing like hiding your head in the sand?"......your right....but still........it is less stressful that way.....we can prep, but not worry about things unless they are actually reality.........
Having lost my Dad to suicide and having intimate knowledge of the pain inflicted on those left behind… I will admit this thread has been a real bummer to me and I just couldn't post. Phranque, as always, you lightened a difficult topic to the point I was laughing out loud! Thank you for that :D. I do hope Emily does refuse your "package, that means I would get you twice as long. ♥ I think however when I pack you up to ship you to warmer weather we will need a bigger box as I have every intention of coming with you!
What is that old saying? Something like “Worry never robs tomorrow of its sorrow, it only saps today of its joy.” I guess I have had enough heartache that I refuse to let anything suck the joy out of living, including myself and my thoughts. What will be, will be.
I agree with you Nikki, and--given your history--completely grasp why this would be a tough topic. Nevertheless, I do think that in the face of AD-like illnesses, it is appropriate for those of us who can bear to, and are interested in the topic, to grapple with end of life and choice.
As for refusing the package...hmmm. I am either smarter or dumber than Frank thinks, and will probably not decline it.
Emily, I couldn't agree more. Before Dad's suicide I most likely would have joined in the conversation. I guess what troubles me most is all the thoughts that still haunt me to this day...like what could I have done to help him? Didn't he know he could NEVER be a burden to me? Didn't he know I would have given anything to have helped him? Did I not let him know I loved him enough?......There are and literally hundreds of "why's and what ifs" that I still struggle with 4 years later.
The thing is, I am sure he thought he was doing the kindest thing for us. I am sure he thought he was being noble and saving us more pain. But that just isn't the case. I feel destroyed and robbed....not to mention lost and heartbroken.
It is everyones "right" to choose..and I would never say it is right or wrong. I would only lovingly suggest people give those they love a chance to say goodbye, to let them have a little peace as well.
That being said I think Europe has it right. Die with dignity and peace, with those you love surrounding you and whispering words of love......
Nikki I to have a family member who couldn't take the pain and suffering any longer from Breast Cancer and took her own life, that was 25 years ago before the Hospice we know of today. When my Mom past away from Colon cancer with Hospice in place she had a peaceful death surrounded with family. As I watch my husbands struggle and when he asks me why does he have to live like this I tell him its because you still have fun being with me thats ususally enough to end the conversation. I do think your right the Europeans approach is a choice and we should all have a choice. Dignity and peace
It is tragic isn't it Terry. I personally have always felt euthanasia should be embraced for the terminally ill. It is horrible that someone should feel they must die alone in order to end their pain. And often times the deaths are violent, like my Dad's, leaving the family with horrific images haunting them. It is just wrong on so many levels. We can lovingly help our pets die peacefully, but not our loved ones? Makes no sense to me, none at all.
I read a story not long after my Dad's suicide about a whole family that went to Europe to be with their Dad as he peacefully left this world. I couldn't help thinking, what I wouldn't have given to be there to hold my Dad and help him. I of course would have tried to talk him out of it, but if he was determined, I would have helped him. It would have been far better........
Oh Nikki, you are so right when you live through any violent death as your Dad's and my SIL you can't imagine the pain they had to be in to cause them to go and do what they did. I think with Alz patlients they should be allowed a choice when they have the ability to make a choice on there later life and how far they want to go with it. Many of us have had conversations at some point with our spouses (via living wills etc) on what their wishes for end of life care should be. The problem with Alzheimers is its years in the making. I don't have any perfect answers, all I have is my life's journey and experiences. I just want my husband not to be in so much emotional pain in this journey. I can't stop the disease, I accept the disease and I don't want the disease.
Nikki - maybe your dad knew you would have helped. Then you would be facing charges cause you assisted in a suicide which is technically still illegal in most states. He was protecting you from any sign of guilt in participating.
I hear your pain Nikki and terry, but I also hear much the same dialog from many here after their spouse dies. There is the guilt, the questions if only I had done this, or did I do that good enough, did I give enough, etc. I do think if someone is going to do a violent death, they should do it where loved ones will not find them, but someone else and loved ones do not see until after they have been cleaned up. I know, that takes thinking of others and when one is so desperate to end life, thinking is not at the top of the pile.
I am glad we have this thread going. We know we are not alone thinking this way. It helps like when in a group counseling and you find out you are not the only one that has been abused, raped, beaten, robbed, etc.. We are not alone - we have our group here to gain strength to go on, survive and overcome.
Just as a point of information, I believe some insurance policies will pay out on a suicide death so long as it doesn't occur within the first two years after the policy is purchased.
i stand corrected folly. thank you. lets say most insurance policies have suicide clauses and you should read your particular coverage to see exactly how each company addresses this:) divvi