Joang, for me, that is the plan for our household. I just don't think I can physically and mentally handle some of the situations presented here and other sites. I admire any who can and survive with their health. DH and I have not discussed the situation and it would not be a topic to be discussed between us. I figure by the time he is ready to be placed, my having discussed it with him now, is not going to make a whit of difference. In fact he would not remember and for us it is better the subject is left alone.
Joan--My husband and I had the same talk. Although I'm sure he doesn't remember it, if the time comes I have to place him, it will have given me a small measure of comfort to have "permission" from him early on. I think your point of view is entirely sensible and rational. Trouble is, this is such an emotionally loaded issue that we'll all probably have degrees of difficulty taking the steps towards placement on a timely basis, unless is it an out-and-out emergency and there's no time to debate. I think that this is one of those situations it's almost impossible to surpress the emotions involved and go with the rational thought, even though that's the best approach.
Joan, I agree with you 100%. My marriage vows did not say I would die caring for him. Only that I would care for him "in sickness and in health". By placing him, I would be caring for him - and probably much better than I could do at home. He weight 200 lbs., I weigh 100. There are so many things I could not physically do and keep him at home. He is no where near being placed at this point and I know I would become very emotional about it if and when the time comes. Please, God, take him before that happens.
About a year ago I bought a book that I've never spent much time talking about here. Frankly the best part of the book was the first chapter which I had originally read on Amazon before I bought the book. Basically the author told the story of her husband's physical and mental journey. Finally one night she realized that she could not get him up off the floor and called 911 for help. The two paramedics who came to help her took one look and sent for another large man to help them. It took three of them to get him up off the floor, and then they took a good look at him, her and the situation and they took him to the hospital, because it was obvious that if they put him on the bed he was just going to end up on the floor again, and rather quickly. It was a light bulb moment for the author. It was also a light bulb moment for me.
I'm not half the size of my husband, but because of physical issues, if he falls I won't be able to get him up off the floor, and at this point I know that there is no reason that anyone would expect me to try. It is one of a bunch of lines in the sand I've already drawn.
At this point my husband is perfectly safe at home and so am I. But when that stops being true, I'll be making other plans.
Our children had been nagging me, 'Please, Mom, we don't want to lose you to the same disease.' Still, I waited too long to place him, only did so when he became too violent, but my health suffered and I'm a strong person. I said 'for sickness & in health, as long as we both shall live' but what happens when, thru no fault of our own, the marriage dies--as ours did--like so many others. I was no longer married to the man I'd married, altho I still loved him dearly--still do, years after he's gone and I have a good new life. But to care for someone does not mean you have to do it all alone 24/7 in your own home and sacrifice your health--sometimes your life. Bringing in help, placment in a care facility is still caring for someone--it's not abandonment, not by a long shot--you're still on call. But you're not trying to do what a full-time staff of professionals do 24/7, plus all the other day-to-day routine things--shopping, laundry, driving, etc. Can't be done by a normal person. And the truth is, that in most cases, the ADLO is better cared for, has more interaction, stimulation and activities in a facility. Altho you do have to make your presence known, but in general, in a decent facility it's best for everyone involved. And you learn to live with the devestation and heartache--either way.
Joan, I agree with your assessment of the situation. Every now and then I try to figure out what he would have said to me if he could have understood what his actions were doing to me. I truly believe he would have said to place him, he would not have wanted me to go through what I was going through. When we began the journey I thought I would be able to keep him home to the end. Somewhere along the way, I realized that I might not be able to and did my research. He did hit a point where it was no longer safe for either of us with him at home. Placement made sense at that time. Bettyhere's comment about the facility offering more for him than I could at home if very true. He can go all over the place in his wheel chair and move more freely in it that he would here at home. There is also a lot more opportunity for him to be active there. I keep saying that loving someone does not mean that you have to be the actual hands on caregiver, it means ensuring that the right care is given at the right time.
I agree with everyone, placing my dh was the best for me and him, sure at times I my have a bad day and wonder did I do the right thing , I promised him I would never put him in a home but couldn`t handle his falling and pooping and peeing and paceing it took alot of work and I am not ashamed to say I couldn`t do it anymore, I am a much better caregiver now, I never yell at him anymore and I found the love I have for him I thought was gone.
My dh made me promise that when I could no longer care for him, I would place him in a carehome. When that time came, with the help of my daughter we found a place for him. It took two more moves to get to the right home for him. This promise did make it easier, but it was still difficult. Eighteen months later it is still hard. However, I really could not care for him now. He does not walk and does not always feed himself, but sometimes I just want to bring him home. I know it is because I am so lonely without him.
Having your spouse in a care home is not a piece of cake. It is my job to make sure he has the best of care (not easy with ever changing personel in homes). I don't like to think it is a waiting game for me, because I don't want to lose him. I have been told I need to get on with my life, but not sure that is possible. I would love to hear how other care givers are dealing with this time in their love ones care and how they feel about their situation now.
I believe we're on the cusp of my Dh going to a NH. When the arrangements for his release from the hospital in 2006 were being discussed, the medical staff were talking NH. I said, at that time, that if I could have some help, I believed the best thing would be for him to come home. We got the help and he's been home. I knew then that there would come a time when I could not see to his care and he'd have to go into a NH, but I seem to have locked into my head that the reason would be some medical event like a Stroke. With me on crutches, there's no way I could personally manage his care,physically. It appears that the trigger is going to be his smoking. He's been a heavy smoker for years. Several Dr.s have indicated that his smoking and heavy coffee drinking were means of self-medicating for years. It has taken all 35 years that we've been together to get him weaned down to 6 cartons a month. Now, however, I've had to cut him to 1 pack a day. He's having a very hard time with that. He has been clearly told, I'll do the best I can, but the cost has risen because of added taxes on them plus regular price hikes. We just cannot buy lots of them and still pay the property taxes and house insurance. We've tried all the helps--gum, patches, etc. His mind tells him he's a smoker, and he doesn't have the mental capacity to committ to quitting. I see 3 ways this could go--he accepts not smoking grudgingly--DOUBT IT. He starts panhandling, going after them himself; selling things for peanuts; taking off (unsafe for him, 5 lane street to cross both ways)= NH. Or he gets PO'd with me because he can't get more. If my safety is threatened--NH. This is coming to a critical point this month. I promised "in sickness and in health" and I'll see him through this sickness, but I'm not dying doing it.
Rationally, I agree with Joan 100%. But there's another rational side. I'm 11 years younger than my husband and our dear beloved daughter, age 41, lives with us, has a minimum wage job - well, more than that now, not a well paying one but one where she functions well and is happy, so I don't push her. We all get along pretty well and my husband, though requiring a lot of physical care, is pleasant almost all of the time, no violence. He is not continent at night, half the time he doesn't know who I am, certainly by name most of the time. But these are not deal-breakers for me. We can even get him up off the floor if he falls - my daughter is very strong - but because he's always had a bad leg and problems with walking, he's learned to be very careful with his balance etc. He's fallen once in the past five years or so and I accidentally caused that to happen by opening a door and throwing him off balance. DIdn't hurt him.
Because of his bum leg he was not able to get long-term care insurance. Because of the leg (chronic phlebitis from the age of 14) he is not a veteran. We have no debts and a comfortable income. And some savings. About enough saved up to cover one year in a nursing home! ONE YEAR!! And yet he might be in there for years, during which time I'd still have to spend time going to see him, watching over him, etc. I think the only rational thing is to expect we'll have to go on medicaid.
But I don't want my daughter not to have the home - or a smaller replacement - when we're gone; I don't want it to go to medicaid. And so until there is some "catastrophic event" I probably WILL keep him at home. Not out of a sense of the vows, but just out of a sense of frugality and reality. Of course I get tired of the caregiving -the groundhog-day aspect of it - but at this point I'm just used to it.
Carosi, you may have already tried it, but if not may I suggest Chantix. My husband is a very heavy smoker but following cardiac bypass surgery we had him completely off them and he never even mentioned cigs. Of course, once he recouperated from all that, he's back on them and I don't even worry about it anymore, but I know Chantix works -- costs about $100 per month but worth it. Oh, and the reason Chantix works is that it works on the brain -- there are no cravings.
briegull you brought up the situation most of us here can relate too also. With the economy the way is and getting worse we are alll having to be careful what we do. I think of that situation also. My husband is perfectly healthy other than Parkenism/AD/VD and Spinal stenosis and that is a lot but his kidneys, heart, cholestral, blood pressure are all perfectly fine. He could languish for years. I will just take it one day at a time and not worry about that for a while.
weejun--I've heard about Chantix, and a couple other new meds like it. I Googled Chantix,and the info states that the user still has to be committed to quitting and follow through just as with other aides--he can't. I still asked his PCP and was told, "I have serious reservations on giving him Chantix because of the serious nature of the side effects, which I've seen and they don't seem to be as rare as I'd like." I asked what kind of side effects and he said "hallucinations and severe depression, which in my opinion would not be worth chancing with his Mental Illness and VaD."
Ever since my MIL died caring for my FIL, my hb has said he does not want me to do the same. As soon as the VA will admit him, he wants me to do it. It will be different as he progresses living in a MH. Ad he is 5'10" - I am 5'3" with a bad lower back (birth defect). I helped my sister care for her husband and there is no way I would/could do all she did. I helped her pick him up off the floor (actually it would take 3 of us cause he was such dead weight); helped her drag him into the toilet and shower (she knew when he would have a BM and time it so he did it on the toilet); Due to his physical deterioration he was not very flexible so he was very stiff to move around; I helped with taking him places in his wheelchair - the best thing she ever did was buy a handicap equipped van. He had a habit of sliding out of his wheelchair (to straighten his body) and one day he slid out of the chair and was trapped between the chair and back of driver's chair. It was really a challenge to get him out and into his wheelchair when we got home. Watched her clean dried feces off his genitals with him swearing all kinds of profanity (never swore before he had a stroke).
Point is, I don't want to do all that stuff for hubby. I don't know how bad he would have to be before the VA would admit him - I will find out one day. But, health in our vows means both of ours health, not just one partners.
Joan..You are absolutely correct, and that is a very wise decision. I would like that for my dw also, but my problem will be financial..how can I afford nh?? Too young for medicare, too old for the second job, and too stupid for not having bought long term insurance. The final stage can be heartbreaking, and I have been there twice already. But for me, I will have to keep DW at home, and seek volunteers to help. I think my wife would be better off now in a nh, because she would socialize more, and would be kept busy..but, finances unfortunately will dictate the outcome of this tragedy.
Since we have lived off our assets these last 3 years, and got hit hard with the investment in the new house, we will qualify for Medicaid, so that is the route we will go when the time comes for placement.
I have seen and heard enough about caring for a spouse at home to know that I cannot do it. All of you on these boards are very non-judgmental and understanding. There are those in my community who are not. But you know what - I can't worry about that. I know what is best for me and my husband. He would be much better off with professionals who are capable of handling all of his needs, than me, who just doesn't have the physical stamina to do it 24/7. And who would oversee his care if I dropped dead trying to do it myself? Our son and daughter-in-law would have to move him to California where they live. joang
I agree totally with you. When we visited a nh a month ago, I watched my dw closely and she became so alive, talking with all the patients. I immediately knew she would be better off there....I know that I can't do it either...I go through the motions, but I am totally incompetent, when compared to the nh staff...my only concern is that they will let her linger in the fetal position for years....I could not stand to see her totally incapacitated. At that point, I would be looking for medication to speed up the ad, and shorten stage 7. As much as I hate to consider that, I want death with dignity..not a Terry Sciavo case....
The point finally arrives when the physical and emotional strains of caregiving become overwhelming. Trying to lift a spouse who has fallen off of the floor is a huge job. I am a fair sized guy, my DW weighs considerably less than I do. It is extremely dificult to lift a person who weighs 125 or 150 lbs off of the floor especially when they have very little strength left in their legs and are virtually unable to help in any form or fashion. It is a tough job. The time finally come when there is no other answer.
Making the decision to place one's ADLO in a NF is a tough decision to make, most of us want to know that we have done all we can possibly do to care for our spouse. The time finally arrives and I now agree that most of us wait too long. I will see to it my DW is taken care of, after all I still love her and cherish the good memories that we had. I've turned the caregiving over to the professionals at the NF.
The time has come for me to move on and have some sort of a life of my own. I'm trying, but it is difficult, I spend some lonesome nights and weekends. I still have the responsibility of visiting, doing the laundry and supervising her care. This takes some time and effort on my part.
Legally and in my mind I am still married to my DW. But my life has changed and is now that of a single person and I have to change my way of thinking. I've had to change my daily habits and routines to adapt. I have functions and events that I attend and tire of going alone, I would like to have a special friend who would enjoy going out with me. But in the back of my mind that old thought is still there -- you're married and still have obligations to fulfil and I wonder how a person of the opposite sex would view the situation. That holds me back, I suppose I will work my way through these issues in time.
My first responsibility is to my DW and my committment to see to that she is well cared for.
jimmie...can I follow in your footsteps???? I feel the same way, and yes it is very lonesome. But there is always tomorrow, and I would hope that if we meet someone special, she would become a friend and understand the commitment we have...sort of accepting the baggage that comes with us..or like accepting her 14 children by her six marriages.......
phranque... I'm happy to know that I am not alone in my thoughts and yes it is a lot a baggage we carry. I am trying to get past the point where my situation is always the topic of conversation, I would like to talk about some other things. I agree a special lady friend would be great, but I have high standards, that sometimes gets in my way.
I am in agreement with briegull. unless there is a catostrophic event mine will try to stay in home with additional inhome help and/or hospice. its not an easy decision either route we take. it just has to be the one that is right for each individual. practicality over heart/mind at times. like briegull said, deal breakers for me after all these yrs is an event out of my hands. the incontinence was bad in the beginning but like everything else i have hardened my arteries on that too. now its just another days business and i believe once they are not in the inbetween stages of going just all over the place but using the depends 100% it becomes much easier not having to clean up the whole house -mine is docile and easy to manange so far. violence rages or security issues would be hard to manage at home. just remember that many of you who read what others go thru will never experience that for your spouses. some go thru the end stages and never violent or anger issues. as you travel the yrs you will acquire more personal knowledge into whats right for you and your spouse. divvi
Very well said Divvi... Each one of us has special circumstances that we factor into every decision that we make. As we have so often said no two AD patients are alike, each one is a unique case.
Oh this topic is too close, right now. This week DH has a dr. apt. we've sent messages in advance of this apt. so that the dr. can understand some of the upsetting events of the past few weeks/months etc. Its too early to place him but the agitation and anger are continuing enough that he's miserable and so is everyone else around him. If additional medication can help, I'll be thankful. I haven't posted much, just really tired. Whewwweee..
There are any number of physical situations that require temporary medication or appliances to help you out, from casts on broken bones to anti-depressants to pain meds etc. Eventually your body changes and you no longer need the "boost" or the "crutch". So it is with dementia, as best I can figure out. You need the calming meds to manage the agitation and anger AT ONE STAGE of the progression, but as time goes on that will NOT be necessary any more. Divvi's our example here as in so much else. Ditto the incontinence problems. So there's no reason not to use these boosts at the time they're needed.
Jimmy and Phranque, there are indeed women who will accept being your special friend in the situation you describe. Joan has several blogs on that topic. Also there have been some discussion threads about that. The only one whose name I can remember is "AM I married?"
Back on topic - Money is always the big issue. Very Big. I know someone who has 24/7 in home care for their loved one. They went through a million dollars in a few years. I do not think Medicaid will pay for 24/7 in home care.
I don't know about other States, but Florida has very small "home" facilities. The take 6-10 people, and give excellent care. Some take Medicaid.
There is also the issue of working. Many caregiver spouses MUST work- it is not humanly possible to hold a full time job AND be a full time caregiver. I know someone whose business kept her from caregiving duties, and she was vilified for placing her husband, rather than giving up her business to care for him. But how was she to pay for his care and her household expenses if she didn't have her business?
She couldn't, Joan...I get angry at those who vilify - for any reason. They aren't in our shoes. No one asked for this tragedy to happen to them, and most of us were/are totally financially unprepared for dealing with this insidious disease. Each of us have taken what we had at the time we found out and do the best we can with the cards we are dealt. Some are more fortunate than others. Some of us have no choice but to do what we do to live. I think those of us here are dealing with our situations the best that we can and we couldn't make it without the support from each other that we get here.
Thank you divvi for reminding us that not all AD spouses have the worst of the symptoms. I remember when I first started here, all I read about was the horrible behavior and conditions you were putting up with. Then a couple months in someone posted that not all of us will have spouses that have anger/violence/raging behavior. That was comforting that I may not face it. My FIL has been docile through his AD (going on 24+ years) so the hope is my husband will be too since he is a lot like his dad.
If you're working, how does that allow you to apply for Medicaid for your spouse? Just a question. NH's are so unbelievably expensive. My DH is a WW2 vet, and we are under care for his AD with the VA. I am in hopes that that relationship will help me when the time comes. right now, he's fine at home, and honestly, I hope he dies before i have to take that step. I think we probably feel that way. We placed his mother and she did settle in, but the guilt he felt was overwhelming. he is so frightened when he doesn't see me, scared to death that I have had something happen. What a horrible decision to have to make, but one that does have to be made at a certain time. When things get to the point that I can't handle it, I will have to go that route.
Charlotte, that was Sunshyne who reassured us that not all AD spouses go through the anger/violence/raging behavior. That was very comforting to me too. She also eased my guilt when I thought the coconut oil I was giving my DH caused his heart attack. We do miss her, don't we?
I have been on this site for about a year and was one of the ones who said "my marriage vows said in sickness and health and I intend to keep my vows". That was then this is now. I can no longer work full time and give him the care he needs. I am preparing for placement even as we speak and even though it will break my heart, I know that I have no choice. My motto is that I need someone else to do the work so I can do the loving.