My husband is in early stages of Dementia - looks good on the outside, still works, but has become of problem and he is going to stop. I read these boards and everyone seems so patient, kind and caring. I see that people have bad days, but seem to be able to carry on. We have had the diagnosis about two years - I think it is getting much worse recently and I think it is Alzheimers. I have seen the signs of a gradual drastic behavior change in the past ten years. We have the best care, good doctors - but they are so cheerful and optimistic with him and are so delighted to see that he is doing so well when he comes to see them. When they ask me how he is doing, I say what I have seeing. He denies it, then I get told that maybe we should go to marriage therapy since I seem to have issues with him I can't work out.
Actually we did go 7 times to a marriage therapist. He is the head of the department at the university here to train new therapist. I took all of our reports and tried to give them to him on the first visit. He didn't want them and wouldn't let me give the history - he said I was being negative. At the 7th session when he finally found out the problem, he sat back in his chair and said that he couldn't help us because of my husband's memory issues and couldn't wait to get us out of his office.
My husband takes the positive info and runs with it. He refuses to talk about his diagnosis, does not want to read anything about it, doesn't want to learn anything about it. I just live in the house that seems like a crazy house of mirrors and even tho my husband is on meds, no one believes the things he does or they minimize them. I am treated like I am delusional - even by my daughter who is a nurse who in the beginning was pushing me to open separateb ank accounts, sleep in a separate room with a lock so I would be safe. I have never said to anyone that I have felt unsafe. But now she says, that these are marital issues and she does see the signs that I see, but that she just doesn't react like I do and that she can handle him better than I do. He doesn't want to go be with her, nor do I want him to.
I keep a journal of his events, dates, number of times, etc. as when I do get to report what no one believes, I want to be accurate and fair. I did put the new events in a letter to his neurologist asking for her to help him see that he has this illness. His psych testing shows quite a few deficits, but even she minimized them. When we went to the testo to go over the tests, he had serious concerns about my husband's safety in his work.
BUT IT WOULD LIKE TO RUN AWAY!!!!!!!!!! Change my name and act like this is all a bad dream. I get support and understanding only on these boards and from a few good friends and my support group. I never hear anyone on these boards say they would like to run away. I do the best I can, I try to make him happy - he never is with me, I will do anything not to make him upset, don't point out when he makes mistakes or forgets things. I don't know that there is anything more than I can do to help him. But I feel like I am the only sane one in a crazy world and since everyone seems to think he is functioning fine - and I don't - I would just like to run away. It is hard to see and live reality and have to act to everyone like it isn't real.
So, I got that off my chest. I do love my husband, and believe in ou 40 year marriage committment, but I wondered if anyone ever felt like they just weren't getting support and felt so beat down by it all that they just wanted to bail out. Thanks for listening.
Faith&Hope, you are not alone....you sound much like I did eight or nine years ago. I sometimes used to just leave the house, get in the car, drive to a parking lot somewhere and scream, cry and pound on the steering wheel. As hard as this sounds, at some point all your husband's deficits and behaviors will become very apparent to everyone....just keep documenting everything and continue to report to any and all doctors, therapists or whatever. I was fortunate in that everyone was aware of the changes in my husband because his personality and abilities were impaired at a very early stage.
There are others here you probably feel just like you do.....most people are ashamed to admit they would like to abandon ship, so to speak. I was never one to mince words and I always told everyone exactly how terrible it was to live with a perfect stranger who looks like your husband but surely doesn't act like him anymore. It is not whining and complaining, it is telling the truth. Now, not every AD affected goes thru all the "stuff" that my husband did, so some surely thought I had to be making some of it up. Believe me, who would make up peeing in trash cans, finding used toilet tissue in the closets and refrigerator, holes in drywall due to anger, agitation and frustration, and I could go on and on?
My advice is to keep up some of your own interests and activities....don't become a second victim to this disease. We are in year eleven of this nightmare and I truly believe that if I didn't have a sense of humor and the ability to somewhat detach from him I would be sitting in a corner banging my head against the wall. The last four years have been calm but only because he is basically a vegetable....in order to put my previous life in perspective, these last four years have been heaven.
Unless someone has dealt with this full time, hands on, and up close and personal, they will never understand. Just know that you are not alone....
My DH literally turned me into an angry basket case for the past couple of years. I'm still a basket case from time to time because I get really tired, and feel alot of sadness that he can't "be there for me." I hate the fact that having to look after him is the same as having a new child come along to change all of my plans for the empty nest years. His diagnosis was official November of 2005, but there of course were issues prior to that diagnosis. I knew marriage counseling would be futile, because looking at how deep and emotional our "discussions" were, on our own, and having him claim not to remember what we agreed on........... well. Why pay someone to get the same end result? The Doc who told you to attend marriage counseling, knowing the dementia diagnosis is simply "A BOOB!" And should NOT be treating patients with dementia. He/she obviously is "missing" the realities of the dementia patients inability to reason, and understand, and even possibly remember to use any advice a counselor might offer. And that Counselor who wouldn't let you enlighten him at the get-go, then takes 7 weeks to reach a conclusion he should have reached in 7 minutes is an even bigger boob.
You are not alone by any means. That's why its so great to have forums like this to go to. To vent, scream, cry and feel validated. Our immediate family, and kids have far better understandings now of dementia, and seldom do they ever question anything I tell them. I think they know I'd bite their heads off if they were to ever question me again. My stepdaughter who lives out of state came to visit for a week in the summer. After she left she admitted to me that while she always believed the diagnosis, she didn't really think the things my two teens and I were sharing about DH's actions were "SO REAL." She admits she was really shocked to see it face to face.
I used to fear anyone hearing (reading) me say I wished this was over because it sounds so uncaring, unloving. But I hate what this thief of a disease is doing to ALL of us. I don't wish for anyone to have to go through this. Like Sandi, I too, have got into my car, and drove off. I had to get "AIR." I've driven up the highway, and sat at a rest stop through the night. Just to get a break. Or to soothe my wounded heart. Yep, if it weren't for my kids, and my sense of obligation to assure my husbands comfort and care, very little would keep me from running off. That's the truth!
Faith & Hope: Of course I wanted to run--to get away & leave him and everything behind. It's perfectly normal and I challenge anyone to say otherwise. I was lucky, on a few occasions my adult son would stay w/him for a week-end while I just went off alone. It was very restorative. Find a way to get your daughter to give you some respite like that--well, anyway, try.
As for marriage counselors--before I knew what we were dealing with, I dragged him to two different ones. Both told me to leave him while I was still young and pretty enough to get another man. I think they knew they couldn't help, but maybe didn't know what was wrong and weren't about to tell me he probably had AD if that's what they thought. But I didn't want another man, and I certainly did not want to break up my home, remove the children from their father. I just find so many 'experts' don't know squat. They learned something in school & put you in that cubby hole & Heaven forbid, if you don't fit in there nicely-----
Sometimes I think I had it easier than many of you. I cared for him for 10 yrs but no small kids, no other necessary responsibilities, no fighting siblings, no having to work etc. Altho no one believed me, it was always 'he seems fine to me.' But I was able to give my full time & devotion to him until my well-being began to suffer and I placed him. I only know 'one day at a time' sometimes 'one hour,' but we get thru it, it makes us stronger (and angry & feeling cheated, etc). But run away, wanting it to end--oh, yeah, those are normal feelings. I even thought I'd strap us both in the car & drive off the end of the Santa Monica Pier--I never would--but that would take care of it.
And,no, I was not always patient, kind, and caring. No one can be that way all the time w/AD. We are frightened, anxious, overwhelmed, stressed to the max, sleep-deprived--no, I was not always patient. I promise you that.
Bettyhere, You say you cared for your husband for 10 years, then placed him. How long has he been placed? what stage is he in now?
When I read about careing for 10 years then placement, it scares me very much because of the duration of this disease. 10 years is a long time, I hope I can last.
Betty, I agree with you about having it easier than some of the others. I feel truly blessed that my kids were grown and out of the house before their Dad got so bad. I was able to quit work to stay home with him and my kids were and are absolute gems with regard to taking care of both of us. They were with me when I had to place their Dad into an AD facility and they were with me when I decided to bring him home three years ago. (Although they both admit they had their doubts at the time...LOL!)
Most of you all are going thru the hardest times. The paranoia, the anger, the delusions...then the sundowning, the pacing, the wandering...eventually, it does get easier...not better, but easier.
I was told many times by doctors, lawyers, financial planners to get a divorce and get on with my life. What a crock...We have been a couple since we were fifteen years old. We are not just married, we are joined at the hip. Frankly, I have gotten on with my life...not the life I planned, but I have found I enjoy solitude, I like doing things on my own, and making decisions without a "committee" is not all bad. When he finishes this dying process, I feel very confident that I will be just fine.
And, for all of you, who have family or friends who don't believe what you are dealing with.....have them spend some "quality" time alone with your LO....like all day and night....whoooooo, will they change their tune.....!
Running away, you bet....but we are all survivors and we always come back...Hugs......
I agree Jane--10 years feels like a long time! And certainly I have felt the wish to cast this burden aside, but because my husband has never gotten really difficult in the ways some AD people can be difficult, I haven't really lost sight of the fine person he was/is enough to really have that impulse. But I sure understand where it comes from.
New Realm is right. Counseling, in the traditional marriage counseling sense, is sure not the answer.
About a year and a half ago my husband came home from Barnes & Noble with several books like "Mars and Venus in the Bedroom" and other things he thought would help in that sex area. Which, pre-AD, was always a pretty healthy area for us. But now, we would make a date with the "orange pill" (levitra) and I'd go along with it as willingly as I could, but in that business, just as in regular life, the AD person doesn't get why it isn't working very well. He's like a radio receiver who knows he isn't receiving the same warm fuzzy transmissions as he used to, without understanding that it's his equipment (both the receiving and the transmitting parts) that are broken.
Anyway, actually I lied. I do want to run away. But I know I won't.
The year after my husband retired early was a nightmare. I had no idea anyone could have Alzheimer's at age 58. His personality completely changed. He would say things like "we have a terrible marriage and you need help" Duh, I need help I would think? He would argue at the drop of a hat about silly things. I did everything but pack my bags. I just knew in my heart that something must be wrong with him as he was a kind gentle man. I decided that I was going to leave if there was nothing wrong with him, but we did get the diagnoses of probable Alzheimer's. He was a great actor and it was hard for anyone to see the changes. He could fool anyone most of the time. That was seven years ago and he is in a home now. It has been a tough journey. Don't feel quilty about wanting to run away. Anyone would feel that way under the circumstances. It is not easy and doctors, friends, etc can actually know what you are going through. His doctor finally gave him meds, which helped. He was angry at what was happening to him. Feel free to come here anytime. It helps to vent and know someone understands, as we all have been through this stage.
Oh, my goodness! DH brought home the biggest sex book I'd ever seen. When he wasn't looking, I hid it. And true to form, he forgot. Once I'd gone for a medical check-up w/him sitting in the waiting room. Afterwards the nurse said DH wanted to see the doc so we went into his office and DH said 'what can we do about having more sex!!!' Damn! It was my medical appt, my 'me' time, my body--mine, mine, mine--and he took it away--well, AD took it away. Couldn't even get away from it in the privacy of the doc visit.
So how does one explain that you love this person dearly, that you really want to make love and show affection, but he isn't 'there' and that turns you off. I've never talked about this before--who would understand? So again I thank dear Joan for this web site. We are so lucky to be here.
Jane: My DH died 4-1/2 yrs ago. It was quite peaceful and I did not expect it. He had always rallied before, but not that time. I am here because I hope some of my experience can help others and, also, because I have so many memories that I have resolved to my own satisfaction, but they are things I could never discuss w/anyone who would understand. It was so refreshing--and almost humorous (our poor, sweet dear lovers)--to read that Emily's DH brought home sex books, too. I've gotten thru all of this stuff--you all will, too, but I don't forget, so some of this buried deep stuff is just great to finally share.
Yes Betty. The other day he pointed out a Dear Abby column to me which was about how women can revive their libidos. It would be unkind of me to point out that there's nothing wrong with my libido, thank you. Why the heck do you think I like Errol Flynn movies so much? This is one of those things where I'm probably better off just letting him think I have a problem.
You must have been reading my mind. I feel exactly the same way and today was especially difficult. We are soon to be entering our 7th year. Husband is,I used to say, at the six year old level, but I think probably it's more like four years old. I have no family. He has four children who life thousands of miles from us and we rarely see.Consequently we are in this pretty much alone. I feel very lonely as we no longer have any conversations which make sense.Few friends visit. I go out for an hour or two to do errands at times but can't be gone long as he could get into mischief. I too was looking forward to a happy retirement but feel that I have been robbed of my last ten or twenty or however many years of my life. I didn't expect to be a senior and single mom at the same time. Of course the responsbility for everything is mine, but I'm not too bad with that. However I will be seriously downsizing. We also have anger issues and hostility.Prozac has helped a bit in that regard. Husband has never admitted to having AD and is not interested in learning about the disease. At this point he no longer reads, writes,follows movies or conversations.
Concerning intimacy, he lost interest some time ago. However the thought of being intimate with a child is repulsive to me. A few nights ago I awakened and he was exploring my body like an inquisitive child would.
As I said, today was especially difficult for me and I don't know why as it was the same as any other. I often think I will not be able to continue as I will go mad.
Please let me know when you run away and where you're running to. Perhaps we can meet for a coffee.
Sandi, I would have to say, a Lawyer, Doctor, or Financial Planner who would suggest divorce from a person because they have a terminal illness would not be worth listening to. A person who would advocate such a thing could not possibly be a good advisor. Would you divorce a person because they had Cancer or some other terminal illlness? Alzheimer is no different. And no, I know that is not the path you took and I know you would not do that, I am just saying, I would not want to deal with anyone who even thought like that.
Bettyhere, I understand you cared for your husband at home for 10 years, then he was placed, how long did he live in the Nursing Home?? Thank you so much for the help. I am just trying to digest the length between the placement and home care and the end of this disease..
Jane, the lawyer and the financial planner have a fiduciary duty to you, their client, to provide you with the information that is in your best interest. All of these people apologized for having to tell me these things, but they were looking out for my future. Since we have substantial assets, I had to hire professionals to set up trusts, and other instruments to protect my interests. Just think, if I hadn't brought my husband back home 3 years ago, I would have given about $250,000 to a facility to provide care for him. I can buy a lot of in home help for a lot less money and I am not depleting assets at such a rapid rate, plus I can care for him better than anyone else. I know this sounds awfully clinical and maybe even some would say, greedy and not very loving, but I know that my husband would want me to have money to live on after he is gone.
I have heard stories of younger husbands and wives who have had to divorce their AD affected spouse in order to have them qualify for Medicaid. What a sad commentary on the state of health care in this country that a family would have to be broken apart to qualify for care. Oh well, that's for a different forum....
The statistics say that the average nursing home stay is three years. If my husband was still living at his facility we would be coming up on six years in just a couple of months. So, every case is different as we all know.
Jane: I think my husband was in the facility for about 1-1/2 yrs, don't remember exactly. You can't always judge your siuation by others--as you know--anything goes w/AD. But I did reach a point where it was either him or me to be placed. I was aging w/my own medical problems and no more to give. In my case, age played a big part--and I've always been a strong person--but still. I wish I could have kept him home, but it wasn't to be. He did very well in the facility, I had no complaints.
Sandi: I am not sure about couples divorcing to get Medicaid. In most states you can certainly spend down to get Medicaid and the surviving spouse gets to keep the house, etc if it's done right. I know of one couple that divorced to avoid paying for care, but the 'family' was still responsible. The money still belonged to both of them. It was a long time ago & things may have changed, don't remember the details.
Thank you so much for all of your comments about this cunning and curious "disorder". As I was reading the responses, I had to laugh - some that were not really funny, but somehow funny in this crazy situation. Funny because I am validated by your honesty that what goes on here - is going on in your homes as well. I agree with all that you say about "professionals". I am a retired Mental Health Counselor and I was trying to be compliant and cooperate with those that could be "objective" and help us. All I wanted were strategies for when he didn't remember, that "we" could do something that could help perserve his dignity. Sometimes I find more empathy, compassion and understanding with people in doctors' waiting rooms, and the Rx line at Walgreens. I find myself sharing very personal issues with strangers and we wind up hugging and promising to pray for each other. I guess God sends us angels where we least suspect - thank goodness. Again, thank you. I will look back at this board on those days when Canada and Mexico are calling. Oh, what I do when I "run" away is take my little dog, my prepacked bag with water, meds, money, snacks, etc. and go sit at the tennis courts two blocks away. People are there, water, bathrooms and they play until about 11. I play during the day but at night I look almost normal there with my bag and my dog and tears running down my face.
I live in Canada, we can sign for a financial seperation, it has nothing to do with your marriage, just a form that says you will not be responsible for each others finances. This is what I have done so that our medical will not back charge me for my husbands care. this disease is just so different for everyone, my husband has only been diagnosed for 2 yrs and is now in a home and is unable to dress himself, toilet himself for walk. We just need to live each day, not knowing what the next will bring.
Betty, I know you don't have to divorce in order to qualify for Medicaid, but these particular couples had young children and the well spouse made enough money to keep them from qualifying for aid and when and if the affected spouse had to go into a NH the spend down would or could have jeopardized the family's future. It is different when the couples do not have other responsibilities....that being said, I certainly don't advocate that people do this, but in certain situations, it is the only way to survive. It is so important to contact an elder care attorney to take care of these things. And yes, the money does belong to both in these cases, but it is the need to get the aid that drives the divorce...
I don't know a lot about this, but I'm inferring that, if one's kids are roughly grown, that the healthy spouse WOULD have to sacrifice most of whatever nest egg he/she was counting on to insure a secure future for his/herself in order to qualify for Medicaid coverage, short of divorce. I really detest the U.S. healthcare system. I'm very hopeful that if/when we reach the point where I need to consider specialized care, that I'll be able to reduce my personal expenses to very minimal for as long as needed so that I can afford the care without risking my future financial security.
Wow Northstar...what rapid progression. It's all so different from case to case.
Right now, to afford specialized care I'd first have to deplete mutual assets. Unfair to people who have kids. I need whatever asset I can preserve for our living expenses. And, especially because I am not actively working and contributing to a retirement account of my own. It's a real catch 22.
And I'm really curious about something. If DH were to pass on before my youngest turns 18 I understand Social Security will continue for him (only til 18 though). What I wonder about is the percent that surviving spouses continue to receive from social security. Is income still restricted? Gosh, I better start seriously looking at some of that stuff. And would my age at the time be a factor? I will likely be in early to mid 50's when this time comes.
When my husband was in the AD facility I was amazed to find that most people thought that their health insurance or medicare picks up some of the cost of long term care. When I told them how much I paid and that no, no one helps pay unless you have a long term care policy or qualify for Medicaid, they were floored. It did get a lot of them thinking about what they would do if they were faced with this situation. I sure wish I had been in the business of selling long term care policies...LOL! I am sure many of our friends looked into purchasing a policy.
New Realm, I haven't really looked into the survivor benefits for SS yet, but I think a surviving spouse can start collecting the benefit at 62 unless they themselves are disabled and then they would become eligible right away. But, this is not something I know for sure. I am sure someone on this forum knows the answer.
Sandi, You say that if you had not brought your husband home you already would have paid $250,000 to have him cared for and that you know he would want you to preserve assets for you to live on after he is gone. Of Course no one knows who will go first, could be you or me, but yes, that is exactly how I feel also. It sounds as though you and I are almost in the exact same situation. One exception, I do not agree that the professionals have a duty to advise divorce. In fact, the lawyer who set up the trusts etc. is responsible to look out for the best interest of your husband because he is the one incompetent.
The need to get the aid does not require divorce. What most people do not realize that if a spouse has to enter long term care, the community spouse, which is the spouse left at home, it entitled to half the countable assets up to $103,000 and then the other part that is counted can be placed into an immediate annunity for the community spouse therefore not requiring a spend down whatsoever. In otherwords, the community spouse is protected. All assets can be sheltered for the community spouse. So if anyone is worried about this, contact your elder care attorney and get these things in order. No need to worry at all. On top of that, the community spouse is allowed the home up to $500,000 in value or in some states up to $700,000. Also a Car of any value. These are not countable assets at all.
The main thing I would worry about is that the incompetent person is being cared for in the most careing and compassionate way.
New Realm, A child's benefits stop with the month before the child reaches 18, unless the child is either disabled or a full-time school student. if a full time student then the child can draw until two months following the 19th birthday or the completion of the school term, whichever comes first. You will receive full benefits for yourself until the last child is 16,regardless of your age. Once you are no longer careing for a child under age 16, you can then at age 60 draw a permanently reduced benefit which is reduced by a percentage based on the number of months before you reach your full retirement age.
Emily, Please see my post to Sandi about having to reduce or spend down your assets, this is just not correct. If you are faced with that situation, please see an elder law attorney before doing any spend down, you will need these assets to live on and they WILL be protected for you. These horrible things you hear are when a child is trying to save assets before they place a parent. a spouse is protected,it is just that some people do not know this and therefore they spend down when it is completely not needed. When purchasing an immediate annunity for yourself that is called a spend down but in fact it is protecting assets for your future needs. Do not buy an annunity without first going through an elder law attorney because only certain types qualify and they are strict.
I am paying into a 401K plan where I work. Does anyone know if this is protected or does this count as community property? I was thinking that instead of building up savings that I would start college funds and really pound away at my 401K so that I would have something after this is all over. Does that sound reasonable?
Well, I am just happy to know that I am able to care for him at home and he is doing better than he was at the facility. It will be three years on Sunday that I brought him home. He looked so bad, thin, and gray colored that I was sure he was going to die any day. Little did we all know....here we are three years later....just shows that you just never know. I would gladly pay any amount of money for his care if I couldn't do it....
Of course I would like to run away--but of course I won't. Still, I have my fantasies. I have begun to spend time on the internet looking for short-term rentals in Manhattan, Charleston, Savannah, and on the beaches of south Florida.The place could be just a studio but must accept my two terriers. So I get to escape if only for an hour or two a day.
I have, however, been very fortunate these last 13 years, that my husband has continued to be so sweet. He has shown anger/frustration only three or four times. And I agree with Anna. Though we had a great sex life pre-AD, it is disgusting to think of having sex with this stranger who is truly more like a child. He was treated for prostate cancer six years ago so is now impotent--a blessing now.
Another thing--when my husband was first diagnosed with dementia, he had to stop driving. Mayo said they were required to report a diagnosis of Alzheimer's-type dementia to the State DMV. I am puzzled that some of your spouses are still driving.
I am taking your last comment about the driving and putting it in the driving topic from a few months, so all the discussions will be organized under the same topic. I would like to hear from people in other States about that. Are you referring to the Mayo Clinic? Because of all the privacy laws, our neurologist said he wasn't required, unless supeonaed (sp?) to give out that information. We're in Florida.
I'm switching now - look for the rest of my comments under the driving topic.
Leighanne, All states have different rules of applying the basics of Medicaid. CA is very liberal. IRA and 401K are considered non-countable assest for spouse. Also they use the Maximum for assets and income. Do a search on Medicaid for the different states. I remember seeing tables of all the states. One reason I decided not to move to Kansas or Missouri.
I was so worried about how I would be able to survive if I had to place him. I finally could not take it any longer and went to a Elder Law Attorney. I now have everthing in place. I am sleeping much better. Maybe none too soon, he fell again today and is becoming very aggitated in the last few days. barbarakay
I went to an elder law attorney last week. One of the things that she advised me to do is to take my wife off as beneficiary to any of my life insurance policies. They are one of the things that are attached by a home if placement is needed. Same with any 401K or annuities if they have her as a beneficiary.
Anna, I'm so glad you are here. I can relate very much to you because I have no children. The hardest thing is to live for oneself. We were such a fantastic team the 2 of us - doing everything together. I am having the hardest time - you say did I ever feel like running away, my God I want to just die! I can't stand this. My husband was just diagnosed with AD on 1/25. This awful started in September but the decline is unbelievable! He is sitting here across from me and talking but making absolutely no sense - it is so scary. I cannot communicate with him right now. Earlier in the day is much easier but I had to put him in daycare because I work full time - with mortgage and bills I'm just about making it. It all stinks! I cannot even believe this is happening. I'm going to call a ElderCare attorney tomorrow.
Anna, I am so lonely I barely get through the day. I tell myself I need to pull myself together but I have trouble doing it. I do get through work but it seems so senseless. How does one get on with their life when I have breakfast in the morning with my husband, he goes to daycare, I go to work and then I pick him up after work and I can't leave him alone at all at night. During the night he is up 4 or 5 times - I'm so tired...
Mar: I know it isn't easy, but is there anyone who can spell you at night, can you hire someone at night, a student, maybe? You have to get your sleep. Remember, this is the way they torture some prisoners. It's no joke. Your resistance will suffer, you can't afford to get sick and your mind will not be as sharp. I know, I went thru it, please try to get some help.
Hi Mar, I agree You need your rest at night but I know it is hard given the situation. I hope you can work something out. Betty can guide you, she has gone thru so much more than us. All I can do is send you bunches of hugs and pray for you and your LO.
Dave you have given good information about the life insurance. One more thing I would like to add. To any of you whose husband or wife have the Alzheimer disease. If the loved one has life insurance on themselves and if they are still competent and able to do so, please have them sign the life insurance ownership over to you as their spouse. You as owner AND you as beneficiary will keep the life insurance from being attached at any point.
Dave, would you care to share with us any other aspect of what your Elder Law Attorney advised? It may help with ideas that our own Attorney has left off.
There is no doubt that we both need help. No one can do it alone but it's difficult when we don't have family. I'm continuing at the moment, but I am seriously considering assisted living where there will be others nearby to visit and communicate with. I have to put things in order first, like selling the house etc. Presently we are having severe anger issus again. Husband is on many medications for heart disease, BP, etc so is not able to take the meds usually given for anger. He is taking prozac instead. Initially it seemed to help but recently the anger has returned.
This may sound cruel to some of you (and none of my business) but why would one want to take meds to lengthen a life with Alzheimer's? Thank goodness that when my DH was still able to think rationally he asked that we never do anything to lengthen his life once AD sets in. He said the last thing he would ever want would be to live to be in a NH not knowing who he is. Said he'd rather die of his cancer. So, even though he has three types of cancer, he has not taken any meds for a year and a half. We would have given him meds for AD but none worked for him and if his pain gets bad, we will, of course, give him meds for pain but nothing to try to extend his life. His doctors, our children, and I all think he made a wise decision. I have also requested the same for myself if in a similar situation.
I can somewhat understand what you are saying but again it is each an individual decision that has to be made by the LO and his caregiving spouse. I don't feel I could delete all my husbands meds. This is my feelings right now and I hope I don't ever have to make that decision or carry out his wishes in that sense of deleting all meds. Well, I know in spite of any orders from him, this has to be hard for you to do and I know you are doing what your LO said to do. Please accept these hugs, prayers and support in whatever you face with this AD Journey.
My husband is only in early stages of MCI - but I see a decline. He is 67. I never thought of the issue of him not having his meds for his heart condition. I am not making a judgement, it hadn't crossed my mind. I wonder, tho, could that be perceived as medical neglect especially if I ever had to place him in a nursing home. It certainly adds a new wrinkle to this cunning disorder. I do have to admit tho, that there have been times that I wished that he had died when he had his heart attack. His neurology problems started after that and it has been so ugly at times. I cry at the sweet memories that he is intent on destroying. I know that he has to be upset about what is going on with him, but the mocking and lies and name calling hurt just the same. This is "new" behavior and why we went for a diagnosis. Thank you for listening. I know I am whining because my problems are nothing compare to all of you.
Faith and Hope, Unforunately, your problems are something compared to ours, these problems are because of this awful disease. Just because you have just started on this journey, no reason why you can not express yourself here in whatever way you have to. We all need to vent or bust. Thanks to Joan We are here for each other and truly appreciate each other's sharing and caring. I did go thru enough of LO's paranoia to understand your frustration. Just to let you know, it goes away; ours with change of meds. Of course my LO still lies only to cover what he can't remember or messes up because of not remembering. My LO had his 1st heart attack at 31, bypass surgery at 32, and had several heart attacks since and prostate cancer 6yrs ago and he is 61, now dz w/AD 4 yrs ago. We have been thru alot but so has alot of you. I only know God's Word says HE will not leave us or forsake us and I hold on to this very tight. And hold on to your memories of him before, know that no disease can take these away. Lots of hugs to you PAT
Pat, My goodness you have been through so much medically. I guess what doesn't break us makes us strong. Thank you so much for you caring support. I am always surprised with my friends if I decide to share and their comments all well indented, but are so far off the mark that I don't feel I can count on them for support. Not so on these boards - all of you are always so understanding, supportive, caring and have words of wisdom and encouragement. Thank you so much - and you are right about God. I need to turn to Him more with my whining. Hugs back
Dear Faith and Hope, Please know that your problems ARE like ours and worse than some of us. For example, my DH has never been mean to anyone. We are into year 12 and he has been a sweetheart throughout this journey. A couple of times he has raised his voice in frustration but it was never directed at me. He is just extremely forgetful, confused, paranoid, hallucinogenic and more or less helpless. But he has never been adversarial. My heart goes out to you. It must be so difficult. We had a neighbor who exhibited behavior like that and his illness turned out to be Frontotemporal Lobar Degeneration rather than AD. And I'm not convinced my DH has AD either. I think it could be amyloidosis which is sometimes a companion disease to multiple myeloma, one of the cancers he has. Amyloidosis can be caused by protein toxins from MM being deposited in the brain and with symptoms similar to AD. Regardless of the names we give it, dementia is the worst of the worst in my opinion.
Bebe, Thanks for your response. From what I have been reading and his neurologist says, suggests it is a frontal lobe issue. A man at my support group said that there are two times that you pray for them to get worse and that is in the beginning and the very end. Sounds awful to wish that, but one doesn't understand until they are walking that path. The neurologist suggested that with the Aricept, that it may not progress. Oh well.................
Husband had been on medication for heart disease, cholosterol etc. for about fifteen years. He is 74 and was diagnosed AD seven years ago. I have never considered stopping the medications and the doctor is still perscribing. I have thought and said that I hope he doesn't go the complete AD route where he is no longer enjoying living and is suffering. But he's not at that stage yet. I think we're at level 4/5. However, I would not take heroic measures to save his life. Another issue to consider.??
Anna, you are where we were several years before the first dx of cancer and seven years after dx of AD. We DID continue his meds for several years but once he was deep into AD and had no quality of life, that's when we stopped the meds. I didn't mean to question the continuation of meds while the patient was sill enjoying a quality of life.
Bebe. I understand what you are saying. We will have to give the medication issue a lot of thought as the disease progresses. Three years ago we had a serious episode and did the utmost to save him. Would I do the same today????
It's a tricky thing. My AD husband's triglycerides and cholesterol have been running high lately, and his blood pressure has crept up a bit--I think due, in part, a slightly increased paunch. Well, we will be upping the bp med--currently very low dose, and most likely adding Vytorin, or similar, for the triglyc./cholesterol thing.
But I'm lying if I don't admit that I haven't had thoughts along the line that a fatal heart attack would be preferable to a continued decline into AD.
Of course, at the present, we will do what we can, Rx-wise, to maximize his health. That's the side I have to err to for now.
But I can see it will get fuzzier and fuzzier as this thing goes on.
I commented earlier but my post didn't go through. Just wanted to say that I often feel overwhelmed and want to run like the wind out of this. It has helped me to see that others feel the same way.
I don't think we have seen you here before. WELCOME to my website. Yes, we all feel like running away at one time or another. Unfortunately, we can't outrun Alzheimer's Disease, so we turn to each other for support, understanding, and comfort.
I feel overwhelmed and sad tonight. Gene had an appointment with the neurologist today. It was very hard physically get him there. He confirmed I am at my limit for being able to care for him at home. He told me it was too hard to bring him anymore so it was our last appointment. Our 32nd anniversary is Feb 8th. I took him to the harbor to our favorite Italian restaurant. Ordered clams appetizer and salmon with a pasta. He ate the bread and drank his beer. A bite or two of our dinner. I had to drag him in out on the seat of his walker. It was a very difficult day. He slept when we returned home. When he awoke, he was in pain, I think his heart, but not sure if that is all of it. With the wheelchair I got him to bed, I thought about call 911. I know the decision is coming, I wish sometimes something would happen to make the decision for me. I have tried to call his grandson, the closest relative to talk to and help me decide. Of course all I talk to is an answering machine. It is 9 PM PST and his daughters are 12 pm EST. I read the messages tonight (2 days), made me bluer, so forgive me I dumped on you.