If you develop dementia, who would you want to care for you?

Donna, thank you for your insights and answers. The one item I may have missed was when did your mother, herself, realize she was in the state of dementia? (or does she, at all?) Did she ask you what was wrong with her, or ask you to help her when she was over burdened with paperwork? I know it's a slippery slope to approach the subject with a parent, and many parents won't or don't know how to ask for help without feeling 'less than' capable. The dementia, which may or may not be the beginning of the 'Big A', as you know comes and goes, so may be difficult for the parent/caregiver to know when the elder is in a lucid state. The medications I take for depression, and pain cause me odd thoughts, but I am afraid to admit them to others. There are so many interactions and side effects I often question my thinking more than others. The care I would want would be a careful monitoring of those drugs. I have also been encouraged by my 'helpful' son to simplify my life, and try to be consistent , even if it takes a huge calendar to remind me. Being lonely will bring on 'plots' for attention as well. So much to say, so little electricity. Best to you. '42

Skinonna, what a great attitude about being a nice demented person vs. nasty!
Kinda like dealing with drunks!
How many straight answers do we really get from our men about serious stuff?
lol

I pray to god I go from a physical medical condition before my mind becomes atrophied from Dementia. My children will never take care of me. I could never do that to them. My children owe me nothing except be responsble adults and be the best possible parents to my grandchildren. I hope to leave a financial legacy, but if not my assets will go for my care.

My father died from mainly from fast progressing Alz but also had emphysyma. It only took him a month after going into a NH. My mother now 88 has fairly advanced dementia, vascular insufficiency, severe osteoporosis, deformed hip/knee/feet and in total denial that anything is wrong with her. She has been in a NH for one yr and keeps telling me she will probably be home in a week - we just go along and say "we hope so Mom". I visit her once a week. I am an only child, 63 y/o with a 25 y/o son. I ran myself ragged for years taking care of her until the last fall landed her in the hospital and then next stop was NH where she is so much better off. I still take care of her laundry however. I told my son, there is no way I want him to go through what I went through with her (just taking her out once month for hair care and dinner is a nightmare in itself). I just want him to put me in a NH where I will get 3 meals a day, bathed, dressed, and medicated. Only thing I hope to do before I end up there is write a list stating what kind of personal care I want him to make sure the NH gives me. I don't mind going there but I don't want to end up looking like a smelly old dishrag either - so basically I expect him to keep tabs on the NH to make sure I am not neglected. I don't expect him to visit regularly but only ask him to manage my care in an administrative capacity.

I would want to be in a facility, where people are trained to handle alzheimer patients. That would not be my kids. I have goals for them. Taking care of me, is not one of them.

I suggest getting long term health insurance, but it is pricey. My Mother is paying zero, for her NH, while my MIL, is paying $4000/ mo.

Long term care insurance is definitely the way to go if you can afford it. The time to buy is middle age, as it becomes more expensive the older you get. Unfortunately I have never been able to afford it myself, but I learned so much working in the insurance industry for so many years. Even if you buy in at an older age, if you can afford $4000 a year for the policy, it sure beats $4000 a month for the NH with no policy. In addition, most LTC policies cover in-home care at the same benefit amount per day as the facility benefit. This allows the elder to age in place at home as long as feasible. There is also a newer development in the industry, whereby you can utilize the cash value in your life insurance policy to pay all or some of your LTC policy premium. This is huge - talk to your insurance agent!!

Wow, what an eye opener this was. I hesitated to voice my own opinion, not wanting to influence or leave myself open to criticism that life is a gift, no matter the quality.

I'm having the "talk" with my daughter this weekend although I don't think she would ever even think of caring for me should I get this hated disease. I will extract from her a solemn promise that she will NEVER, regardless of who it is, care for a family member affected by dementia.

I have written a will and executed a DNR. I have made arrangements for all my furbabies to be cared for after my death. My mom and I did all these things at the very beginning of her diagnosis of dementia, long before it was little more than a bother. We've had a lifetime to talk about our wishes and I knew what hers were. Despite all our planning, the end of her life was a painful nightmare.

Should I be one of the damned, I will end my life shortly after diagnosis. Not because of depression. Certainly not out of desperation. It will have been a well-thought-out, intelligent, conscious choice. I will put my ducks all in row, sell as much as I can, update my will and go.

Someone asked what they do with you if you have no family. Go to any locked Alz ward in any NH or AL facility and you'll find out quickly and painfully. Many of the patients on my Mom's ward had been there for 12 or more years and had not had ONE single visit. Even those with huge extended families. The aides and nurses told me stories... heartbreaking, painfully detailed stories of how their families came in with them when they were admitted and then never saw them ever again. The worst part? The majority of them were lovely, loving, funny, wonderful, demonstrative, silly, affectionate and sooooo easily loved. I fell in love every moment of every one of the many hours I visited.

They were forgotten. And sometimes they knew it.

annet, you asked what about me? There is no one to care for me. Even if there were someone willing, knowing what I know about Alz care, I would not want or allow that to happen. My decision was made quite some time ago.

That is not to say that I would change having taken care of my Mama for anything in the world -- it is what I HAD to do and I wouldn't have had it any other way. I loved her beyond a normal Mom & daughter relationship. She saved my life a few times and she was (and will always be) my lifelong best friend. There just was never a question but that I would be there for her but it has bankrupted me emotionally, physically, financially.

When the end is near, I will not hesitate. I will go peacefully and courageously by my own choice and my own hand and be a burden to no one. I hope that doesn't sound sad because it's not meant to be. It's just meant to be my own reality because I will not linger painfully. All I can do is hope that God will not judge me for a decision based on my love for those left behind.

Hugs to all the caretakers, kisses to those affected.

You're all amazing, courageous and exceptional.

Geez, bobbie321, way to make me never, ever want to go out on the open ocean again! Sorry for waiting so long to respond; my computer goes in and out. I guess I was hoping for a miracle answer, because I seriously doubt I could work up the guts to commit suicide, and even if I could, heavy drugs are really difficult to get hold of, at least legally. I guess I'd better develop a spine...maybe if I get Alzheimer's, I'll forget how spineless I am, and just go for it! Just kidding; seriously, it's a terrible thing. The only reason I'm thinking of it is because my elderly mother has been talking about it of late. We're both really worried that she has this disease already, and she says she'd rather die than let it get too bad. Naturally, this depresses me to no end...

I would hope for a memory care facility. I would be worried that if I became violent that I would hurt my family.

Petunia,

The ocean is a formidable force. I doubt that I have any sway as to whether someone goes out there or not.
A question was posed and I answered it based on my reality not anyone else's. I actually haven't thought about this issue again until I saw my name called out.

Of course you are depressed to no end. This issue is probably one of the most depressing situations out there and wanting to avoid it is a sign of a healthy mind, not a spineless one.

If you can get your mom to be diagnosed properly then both of you will know for sure what you are dealing with as opposed to worrying (I hope needlessly) about something that may or may not be reality.

My favorite down and dirty cognitive test is to get a person to draw a clock. A round clock with the numbers in the right place. If they get that far have them draw the hands to tell a certain time, let's say 9:30. If they get that far, go out to lunch and celebrate for you have a lot of time before anything is going to be bad.

If, perchance, your mom can't draw a clock, don't despair. My mom couldn't draw the clock and we had another 4 good years. We all will die at one time or another and it will be game over. Accepting that can bring relief to your days or you can spend time worrying about dying and how you're going to die. If your mom has a form of dementia, arrange for help and live your lives.

After it is all said and done, all we really have as human beings is this moment we are living in. We can choose to be fearful or we can choose to live our moments without fear and worry. It's our choice.

I will return to the vast, open ocean in this big trawler. For now it is my boat. The day may come when it is my tomb, but that day is not today. And since I can draw a clock and set it to whatever time I please, that day is no time soon. Unless something else happens. Whatever, there's no upside in dwelling on it.

Set your sights on joy and try to stay with it. Happiness, as always, is a choice. Not always an easy choice and many times if we are predisposed to depression a difficult choice to hold onto but we have to try our best.

Keep writing it out and keep venting. It will help. It sure has helped me over the last 3.5 years.
Good luck Petunia, at least you know that there are people listening to you and people that care about what happens to you and your mom. You will be ok.

lovbob

I hope my kids would love me enough to want to take care of me but at the same time I don't want them to give up their lives to care for me. I hope and pray that my mind doesn't go. I'd rather neither mind nor body go and I just go quickly but if my body were to go, I'd at least fight like mad. If my mind went I wouldn't know how to fight that. If I do end up needing care, I want my dh and/or kids(if dh isn't alive at the time) to put me in a good home and just make sure that the staff is caring for me properly.

I have taken care of my husband with dementia for almost ten years. I have seen the despair when he first found out, the inane behaviors about 3 years into it, and the physical decline and loss of communication skills. If I had gotten it, I have no doubt he would be taking care of me. After all, we signed up for it over 40 years ago.
But on the other hand, what child of ours would be able or willing to care for me or him if I happen to die today? Our daughter would feel obligated more than our two sons. But she works in a supervisory position and has 3 teens and a husband. Our oldest son also is a manager and has 2 kids still at home. Our youngest unmarried son would probably want to do it, but years of caregiving would greatly impact his chances at a career and marriage. We have 2 adult grandsons who might do it. In theory, if everyone cooperated the burden could be spread among five willing adults. However, from reading these posts, I have learned that usually only one takes on the main burden with very little help from anyone else.
So I guess I need to look into a long-term care plan today. I'm lucky enough to have enough money to pay for several years if necessary. I'm starting my search today.

Dear Twotonne & others: Right on this site, under the Money & Legal tab, go to Insurance Matters. In the blue box they suggest steps to take before buying Long Term Care Insurance (LTCor LTCI=same thing). However, under that there is a list of articles the first one being how to purchase LTCI using your life insurance. LTC coverage can be quite expensive at an older age (although still preferable to paying a nursing home monthly out of pocket), but if you have sizable cash value built up inside your Life insurance policy, that can be used to fund a Long Term care policy. From what I understand, Medicaid can't touch either the Life or the LTC in that case. Without that scenario, Medicaid can make you cash in your whole life policy in order to spend down your assets to qualify for Medicaid benefits, and only allow you to keep a pittance for funeral expenses. Sad but true what the govt can put us through! So please read the information on this site, AND talk to your insurance agent. If he is a diligent sort, he will have earned his CLTC (Certified Long Term Care) designation. You would think someone was paying me to advocate like this - unfortunately not! (LOL). I am seriously worried myself about my situation, and I worked for a Life agent for 15 years, and could not afford it when I worked for him. Unfortunately, I've already spent down most of my assets and at this point cannot even afford to do what I know is advisable to do. If I ever win the lottery (Oh, your have to play it to win??) LTC will be at the top of my bucket list!!

My husband and I are four years apart. He is 6'3" and about 250 pounds. He has terrible knees (old football warhorse!) and I have been on permanent disability since age 53 due to severe degeneration in my cervical and lower back. We both have arthritis. That being said, though, we are in relatively good health and do our best to take care of ourselves. We have also financially prepared as well as we possibly could. My husband has LTC that would last approximately 5 years in assisted living or nursing home but if he could opt for home care, about 8 years. I was unable to get LTC due to my back problems. Instead, we took a portion of our 401K and put it into an annuity (we both used to be mostly opposed to these but have learned a few things about them) that has a death benefit that is roughly equal to his LTC amount so it is the best our financial planner could present 'in lieu' of LTC. We also have other investments and pensions as well as our 401K savings, so unless the world comes to an end (seems sometimes like it will!) we can only do what we can do. The other part of this is that we have been reasonable about where we live. We have a yard small enough for us to have reasonable yard service when we can't do it ourselves and a one story ranch style home with a layout that would allow us to provide a room and a little privacy for a caretaker if someone had to live here.
Dementia is only one scenario that we have thought of. My MIL's two sisters died of Alzheimers and she was sure she would as well. She is 93 an living in what is really a hell hole to us because she refused to leave the same small town she lived in for ever. We tried to get her to come live near us in a larger metro area with better doctors and more variety of places for care, but she wouldn't do it. I understand, but she ended up in really the only place available to her in a town of 18,000 and while most of her 'cohabitants' in the nursing home are on Medicaid, she saved all her life and now has exactly the same existence as those who didn't prepare at all. She hates it there, assumed she'd be dead way before this or would have lost her mind by now. Instead, she suffers recurrent UTI's, has a very, very slow growing mass in her lung and it seems is just depressed and waiting to die. I feel so bad for her.
All of this has made both my husband and me openly discuss and make plans for as much as we can. We have six kids but of all of them, truthfully only one (and his wife) do we feel we could totally trust in every way to do what we would ask them to do if we didn't have the capacity to care for ourselves. They are totally self sufficient, sweet to each other, share very strong Christian values in their marriage and are easy to be around. They are not self centered, crisis oriented or financially struggling. Also, this particular son is a type 1 diabetic and he and I have had very frank discussions in the past, before he was married (he was diagnosed at 22) about how he would want decisions made for him if his kidneys failed, if he went into a diabetic coma, etc. I cried when I was out of the room from him, but early on we have had to face some tough subjects and commit to each other how we would want to be treated and our wishes honored. Fortunately, we are very open and honest with each other and we are all realists.
He and his wife know, as my husband and I do, that financially preparing as well as being open and realistic is crucial in order to have the best and healthiest life before and during old age. Refusing to sell the 'two story home we lived in for 45 years' or not wanting to think about things that need to be thought about or planned for can have catastrophic results. Death and illness is a fact of life. I have told my son that all I expect of him is that he find me the best place that he can to care for me (if I became so disabled mentally or physically that I could not live in my own home with care) and then make sure that those responsible for my well being do their jobs. And frequently visit me, hold my hand occasionally and most of all have a happy no-regrets life taking care of himself and his own family.

Bobbie321, thanks for your helpful and, if I may say, rather poetic answer! I have tried so hard to get my Mom properly tested, but her regular doctor, who did it on his own after a visit, only asks her to repeat back to him three words. I don't feel this is in-depth enough to decide whether or not she has dementia or Alzheimer's. That clock test is probably a much better determinator, and can't be faked as easily. I will try to sneak that one in on her, but she's pretty ornery, Alzheimer's or not. She saw her own mother die from the Big A, and she just doesn't want to know. I tried to get her seen by Paramedics and tested during one of her worst days, when she wouldn't stop screaming and yelling and fighting with me, but she's got rights, too, and she refused. Hopefully, she delights in drama too much to actually do herself in, but I confess, I am nervous all the time. This in turn gets me philosophizing about what my own elderhood will be like. Thanks for the good words, and the advice. I appreciate it. It really is good to have a place to vent, even if I only access the site sporadically. Maybe one day, I can actually return the favor by helping someone else!

Good Morning Petunia,
Your mom sounds like she probably has some form of dementia which could be staged by a specialist. Selfishness, screaming and yelling and fighting with the one who is trying to take care of you is just one facet of it.

I believe that it is the worst disease on the planet because everyone in the vicinity gets it and you never know where the truth is. Crazy making and that is the 'nervous all the time' you are experiencing. Sux big time. This is the part where you have to take care of you because her disease can carry you away.

My mom's primary doctor got himself fired when he proved to be no help. I researched and learned about Namenda and Aricept (back in 05) and got her to a new doctor and started on these meds. They helped A LOT for my mom's particular brand of dementia and made her a lot easier to get along with.

Keep writing it out and you will get through this. Also, remember to breathe. When we get stressed many times we hold our breath. Add that up over the course of a day and we are depriving ourselves of air and in turn, sanity.

I found myself thinking about how I would age as well. My mom was getting the best of what I could offer and since I have no children and will obviously be on my own I had to fight that anger at myself for quitting my job and therefore losing all of those earning years where I could be providing for myself. *sigh*

You're already helping others. In writing out your frustrations and getting a response your problems will reflect the problems of many people who can read about you and use that information for themselves. Easy peasy.

Have a good Tuesday.

lovbob

Amen Pvondyl...I believe in Dr. Kvorkian. What happens if I can't commit suicide before I become incapacitated? I don't want my children to go to jail for following my wishes. I have belonged to Hemlock Society and now Compassionate Choices all of my adult life because I don't want to go through the hell that I have seen so many of my family members go through.

Wellington, thanks for the reply. I too, don't want it to go too far, or have any of my children in jail for doing what I've requested. I don't know how hospice works yet, but have a feeling they're not 'fast' enough. The 'grand, sane, elder dilemma'.

I have so much compassion for anyone considering this subject. My personal belief is that I am here not for my purpose but for God's and when he is through with me then it will be my time to go. Knowing I truly believe that within myself, I don't feel that I have that choice - to end my own life. But I wouldn't judge anyone for what they do because it is all up to God to sort out. I know many people think that anyone who believes as I do is stupid. Maybe so. What is within my ability is to plan and prepare as fully as possible and make certain that my kids know how much I love them and that means I would be completely unhappy to see them destroy their own lives by allowing my care to consume them. I also do believe within my faith that it is God wish that once a man and a woman marry, they are to become 'one flesh' and leave their father and mother and 'cleave' to their spouse. Honoring me only means they should look after those who have primary responsibility to take the best possible care of me rather than put me in a place and let me just rot there. I have raised my kids to not expect a big inheritance but to know that to the best of our ability my husband and I will and are planning for our old age to the fullest of our capacities. THAT is our gift to them.
Do I say that I am right and judge others for their feelings or desires in this matter? No. I pray that even if I am incapacitated in any way (not just mentally) I will in some way serve as God's vessel before I go home to be with Him.
My sister is a hospice nurse and they are a wonderful organization. I have also seen health situations that were mis diagnosed as Alzheimers. One was my FIL, who had congestive heart failure and a bad drug reaction which mimicked Alz. He did better once his oxygen levels and meds were sorted out as far as his cognitive state and he and my MIL spent the last year or so of his life with her caring for him and bringing a close to some things that cutting his life short would not have allowed. I know this isn't everyone. God bless anyone struggling with these issues.

Dear Frustrated2, You are blessed with Gods Love, and knowledge of the systems that care for us elders. I do not make the decision without God knowing my every thought or intent. Your open minded attitude is one of your gifts. If that which we call God is not within us, we are lost. But we have been given free will, and though to some it would sound 'wicked', my life is my own and my choices as well. If That Great Spirit doesn't want me to 'leave' yet, I know I won't be able to execute any such plan. I no longer have a husband, but I do have 4 wonderful sons and their families that each, in their own way, care for me now. When I don't know them anymore, "I" don't exist. Best to you all for your deep caring & interest. This topic seems to touch us all. Can't type any more, because believe it or not last Sat. I was mugged and my purse stolen, and I have splints on my fingers. I fought back, but still lost over all. Warning ladies, use pockets, not pocketbooks!!