You know I have been questioning myself if I am doing the right thing, everyone tells me I will "know" when the time comes. Well the last couple of days are telling me it is time for both his safety and my health. As I said before I must work, we have home support for 4 of the 7 hrs I am gone. I am always so worried about him in the hour between support visits, on Wed JR was sitting at the dining room table when the home support worker left, when she came back 1 and 1/2 hrs later he was still sitting there as he could not get his balance to get up. Poor guy had a numb bum! Then on Friday he was on the sofa wathing a movie when she left. When she came back he was covered in feces, had forgotten to go the bathroom and then tried to clean himself up. Thank goodness our sofa is leather, it the floor, and him were all in need of disinfecting and cleaning. I feel so bad that he was alone when this happened. One thing I am trying so hard to do is maintain his dignity through all this. He has not slept for the last two night and this is with sleeping pills. Last night I got up at 3:30 to a wet bed, stripped the bed, mattress pad, showered both of us and went back to bed at 5 , by then we were both awake so another sleepless night. I feel so bad for him, last night as usual he kept asking me where I was, but this time there was a new twist he also asked where JR is. I hope today goes better. I am now wondering if we did the right thing , I wanted to stop the namenda, and have cut it down to 10 mg a day, I wonder if that was a bad thing, he just seems to be going down hill so quickly. kathy
Dear Kathy: There just is no right or wrong when dealing w/AD. You do what you think is best at the time, question your actions endlessly, but that's the way it is. The meds help some people sometimes, but they are not wonder drugs and the disease continues to progress no matter what they take or what dosage. I remember once asking a nurse, 'is it the drugs or the disease?' and she said 'it's not the drugs.' You cannot go on like this and he needs better supervision. At this point, he should never be left alone. I say this from personal experience and understand your anguish. You are doing the 'right' thing and will continue to do the 'right' thing. We just don't have control w/AD, no matter what we wish or try. Would that it was otherwise, but this is the hand we've been dealt. Frustrating beyond endurance at times.
KATHY, Sorry that it is getting so hard for you. I understand your concern with meds and I understand Bettyhere's helpful discussion to you. The only thing I felt to add was somewhere I read on a discussion; if they show fast slump without the AD meds, put them back on; And if no big changes; leave them off. Situation is we may not know if or not. And No; We just don't have control on AD, We just have to pray for GOD'S guidance in our decisions and know that you can only do so much than you need help. Thanks for sharing, PAT
I understand how these days go, with the worries, the changes, LO's questions and fears. Then our own questioning of ourselves, of LO's medications, our decisions, and our choices. I understand the dilema of needing to work. I don't work outside the home now, but I need to. I'm not free to take a job because of DH having AD. I'm sure my position is easier than having a job and feeling pressure to be home.
With the meds, the others have more experience with that and have given you better advice than I could offer. I took my DH off Xanax. I had requested it for his agitation, but it didn't help. I wanted to take him off Aricept because the first couple months on it were good, then rapidly went down hill. I asked the doctor and he said "NO." Then he added another. Absolutely no improvement, but Depakote can't be abruptly stopped. Since this is a new neurologist I better let him take charge - at least until we have developed a good relationship.
I get confused and frustrated trying to know which meds are working, how much I should assume DH can do safely, how much to allow him to do, predicting how he will react to any given event. It's awful for us spouses to be unable to anticipate what each day will bring for our LO -and ourselves. We can only feel blessed and thankful for the good days.
I'm sorry for the saddening changes for JR, and consequently for you. I hope somehow the two of you start to get sleep, because sleep deprivation will wear you both down. I can't really give an educated opinion on the medication questions as I said before...because I am just beginning to rethink my DH meds. My thoughts and prayers are with you and JR, and with all of us here dealing with this horrible disease that has gripped our loved ones.
It sounds like to me that it is time for some changes. If you keep JR at home he needs care all the time you are gone. You need your sleep. It is imposible to think clearly when you are not getting your rest. This is one of the problems that prompted the doctor to tell me it was time for Ralph to be placed in a home. I did know when it was time to place Ralph, but I doubted by decision and it took me two months to finally find the right place. Not sure why there is such a down hill slide in a short time. One of the mysteries of AD. Ralph is off of AD med (Razadyne) but is on 10mg of Namenda. The doctor wants to keep him on Namenda. It is so hard Kathy. I am thinking of you and know you will do what is best for both of you.
thank you again to all of you for your words of support, I know it is time, the days are just getting harder and harder for him. I will keep you posted Kathy
Another sleepless night, and JR is so angry one minute and then depressed the next, he is sick of everyone telling him what to do. He was so delusional yesterday and I could not seem to do anything to bring him around. I am going to call today and see if we can get him in in Jan. Kathy
I'm so sorry. I know what that delusional behavior is like. At the beginning of the whole ordeal for us, Robert thought he had committed some horrible crime and that the police, FBI, and army were after him. He would take apart his cell phone and pager so that "they" couldn't track him through them. He was prone to rages and it was really, really scarey. I don't know if that was related to the AD or his other mental illness - either way- it really stresses you to the max.
At least then, he still had his toilet, bathing, eating, etc.. skills. I can't imagine dealing with it all at the same time. You're my hero right now.....
Thank you Leighanne, all of you are my heros, we can get so much from listening to others and supporting each other At least we are fortunate to have raised our children I do not know how those of you with children at home get through the day I think of you guys often Hang in there we will all get through this with a little help from each other Kathy
I went to see my/our md today. JR had a ctscan last week. The scan showed some shrinkage but not much our Dr said that was because he did not have a vascular dementia. He is also now going to support me taking some time off work. I am going to see a counsellor on Friday and one of the things I am hoping to get out of the visit is for him to "book" me off work until JR can get a bed in the nursing home. We are still hoping for Feb 5th, the health care worker called me yesterday and said there are 3 on the list and we are 3rd. so hopefully we will still get our spot. JR seems to have leveled out , he is still very confused and seeing things that are not there, But at least he has not gotten any worse. I decreased the namenda to 10 mg and I think I will leave it there for a bit and see what happens. Our Dr also said something else, I stated that I felt very selfish for wanting to place JR, and he said you are, why would you want to keep him home when he could have company all day, stimulation by people who are trained to deal with AD pts, and also he would have the freedom to visit and raom the unit. And you know I never thought about it that way. I guess in my little ego mind I felt I was the best caregiver for him. I felt I was selfish for wanting to place him so I could have a break. Now I am looking at placement in a different light, it really will be the best thing for JR and in turn give me the opportunity to enjoy the time we have together instead of being so physically and mentally drained that I am not worth much to anyone. Anyway long story short I am feeling much better about the placement and looking forward to hopefully having a month off to be home with him prior to his placement. Kthy
I too had to place my DH about 8 mos. ago. It is a very difficult time for everyone and I also felt the guilt and hurt of having him placed, but, the truth was, I could no longer take care of him the way he needed to be cared for. I was one person and it got to be overwhelming. I was getting no sleep and my health was definately starting to go down. I knew that placing him was the best for both of us. I came to the realization that I had to keep myself strong as I am still his Care Giver, but, in a different way now. I feel so much more relaxed when I see him and we can actually enjoy our time together. Today, the NH gave the residents a Holiday Party and Santa Clause brought them all gifts, we had music and sang Christmas carols. They had food and goodies for them. Today it was 85 degrees, so, I took my husband for a walk, even though he is in a wheelchair, we still stroll around. It was so nice.
The way I looked at things are that in the NH environment, they have 24/7 staff. They have Nurses, CNA's, Dieticians, Activities Director, Physical Therapy and they try to keep all the residents stimulated by having lots of events planned. I also got to know the staff and am very involved in the care of my wonderful husband.
It took me a while to build back up physically, but, I am getting there. Mentally, I still struggle sometimes, especially since this is my first Christmas without my husband. But, I know he is so much better off now at the home. Like the Nurses told me, they work an 8 hour shift, then they get to go home, when I was the Care Giver at home, I had no one to relieve me, it was 24/7. Like they told me, they are Professionals and they know how to deal with AD.
My prayers are with you. Know there will be times when you will see something while driving or hear a song that reminds you of your husband and you will cry. At night, there will also be tears of loneliness, but, all of this is just the process we all have to go through. But, with AD, we all shed tears from the beginning, so, you do get through it the best you can. Also, know that at this point, you are doing the best thing for JR and yourself. Kay Kay
Thank you for your kind words Kay Kay, it is this board and the support of other spouses that has given me the strength to deal with things. I will come back here I am sure and read the words of reassurance many times in the coming months. Happy Holidays and thanks again kathy
Kathy - does BCmed pay for his placement? I seem to remember that you said you had to sell your home. I guess I'm trying to be perpared for what is coming financially, along with everything else.
I work with people that are mentally challenged and I know how important it is to take care of the caregiver. I too work 8 hours and then go home and can turn it off. But now I go home to who knows what he'll be like. I know when it is time that I will not feel quilty because I know how much I care and give for the clients I support and he will get the same care in a NH.
Hi Shelly The medical pays the majority and depending on your income the person is charged a certain amount a day , from $30.00 to 60.00 a the home my husband is going to. My husband has no income and no assets so I am under the undertanding that the facility will take his CPP and that will cover his stay. I am now waiting to hear back from a social worker from the unit to find out more. Thank goodness we live in Canada where at least the majority of the stay is covered. I saw a mental health counsellor yesterday, he said my mental health is fine, it is the grieving process that I am now going through, that is why I cannot stop crying! I had to sell our home to pay off debt that I could not pay on my income. Thank goodness we had that equity. As I have said before this AD takes everything from our loved ones, and then we the caregivers are left to pick up the pieces of our lives both financial, emotional and physical while still trying to do what is best for the person we love so much. Take CAre and try to get a few moments of quality time with those that are important to you over this holiday season. Kathy
I have said that "AD breaks your heart then puts you on the fast track to the poorhouse." I've been yelled at in the middle of the night, threatened, accused of all sorts of terrible things, cleaned up poop and cried my heart out. I've been there, done that, wrote the book, so I know all too well what many of you are going thru and it may be small consolation at the moment, but most of you will get thru it.
Merry Christmas, Happy New Year to all, as best you can.
Boy, I hope to reach that point Betty, and still be in one piece. I've had the worst couple days of my life. And this morning starts the third straight day of starting up with the first breath of the morning.
DH is inappropriate in his actions and remarks, chatters incessantly, vascilates between anger and whining, and smothering with affection. I'm cancelling out of possibly the only outside contact I would have this holiday season. Party at sister in laws just down the road. Can't bear to think of going outside the house again with DH. Kids are hurt and angry, but they refuse to go to the party too if DH is there and they know we can't leave him at home. We learned that the hard way when I stormed out for an hour to regroup. He called their school, got in the car (he had ceased driving and I never had to hide the keys before that), and embarrasssed the kids by telling the office he didn't know where his wife ran off to, but he feared someone else was trying to pick them up from school. They are 15 and 17, and they don't take well to any parental embarrassment at that age.
I haven't shopped for Christmas. Kids will get a note under the tree with what I intended to get them, but I won't be out to get these things until life straightens out. One of daughters friends, another teen who drives offered to shop for me. How do I send the kids out when I have to use a check or credit card? The bank is 13 miles up the highway. This Christmas is screwed.
I don't know if this will be any help to anyone, but it is in line with what Betty said, and it sometimes helps me.
I have mentioned before, that when our son was 14/15, he gave us the worst years of our lives. It was a living nightmare - wrong crowd, bad decisions, a household in total disruption, idiot counselors who gave the wrong advice. The break came when I was curled up on a couch in one of the counselor's offices, sobbing, at the end of my rope - knowing at that point that one of us had to be placed. It was him or me. We placed him in a facility to get his head straightened out. The ensuing year of family counseling and everything that went with it tore me to shreds. I thought I would never get through it. We did get through it, and life finally went on.
This Alzheimer's journey is tearing pieces out of my heart every day, but as with the situation with my son, I know that we will get through it. The end will not be the way I expected our lives to turn out, but I have no control over that. I just know that I will get through it - BUT not without all the help I can find. COMPETENT counselors; psychiatrists; doctors; social workers; friends; family; respite; the Alzheimer's Association; - I urge everyone to look for and use every possible resource available to you.
New Realm , my heart breaks for you, I do not know how you do it with children still at home. I understand about no Chrismas shopping, I am not finished with the little bit I do, nor have I done any baking. Just can not seem to get my head wrapped around anything I should do. Hang in there and try to have as good as a day you can for your children. As Joan and Betty say I am sure we will all get through this, we may need some counselling and we certainly need the support we get here and on other sites. I feel so safe on this site that I can speak what my heart feels. For me I am naturally a caregiver both in my job and our families, so it is hard for me to take the time I need for me without the guilt. I have asked our daughter to come and sit with her dad afor a few hours on Monday so I can go get the groceries for Christmas dinner. I am also going to take a few minutes to sit and watch the holiday shoppers. I have always enjoyed the Christmas season and I hope to enjoy this one as best I can. I will stop grieving long enough to do so! love and hugs to all Kathy
You cracked me up with your salutation, "this Christmas is screwed". I think that pretty well sums it up. Relax and hopefully enjoy the day surrounded by all your love ones. If everything does not get done, remember you have 365 days, until the next one.
I'd like to add one more thing about getting thru it in one piece. I'm not sure I could say I am in one piece. In the 10 yrs I cared for my husband I had two major surgeries, a concussion w/a two-day hospital stay, and the worst case of shingles my doctor said he'd ever seen. Now, mind you, since I was about 7 or 8 I knew I was a strong person & my Mom always said I could do whatever I set my mind to, and I believed that. But there came a time when my children kept pleading, 'Please, Mom, we don't want to lose you to the same disease.' They could see what it was doing to me, they'd gone to lectures and learned a lot on their own, but placing my husband was so hard even tho I knew it had to be and finally I knew it was either him or me would have to be placed. My medical problems may have happened anyway, at least one surgery, a ruptured appendix--the others are 'iffy.' I waited too long to place him for my own well-being, a common decision. It just doesn't get any better--a good day here or there and you think it'll be OK, but then it hits the fan--literally--and with children in the house--I don't know how you do it. It really takes a staff of professionals full time to care for an AD patient and yet we just go on 24/7 as if it's do-able for one person. Certainly I am not saying it is easy, but when the best you can do is the best you can do, then the best you can do is enough, and it may be time for someone else to take over.
A counselor who suggests placement is really looking out for the caregiver, that's who her client is. A doctor who asks how you're doing, knows how hard it is, he's seen it before and is concerned for you as well as your loved one. If you can get good help in the house, that helps, but when the time comes, please don't feel bad, don't carry guilt--none of it is your fault. I know you won't want the separation--I was sure I could bring him back home and do a better job, but I also knew that was not possible. If placement becomes necessary, try not to put it off. Most AD patients do quite well in the right facility, it's the caregiver who has the most trouble adjusting. But there is a future, I promise you that. It won't be the future you planned together, but it will be.
Bettyhere is a wise woman, much of the wisdom garnered through difficult experience.
I would like to add something my cousin recently told me: Remember the three C's. "You didn't CAUSE it; You can't CONTROL it; You can't CURE it." All you can do is get the most help available, as I said in my last post.
I agree New Realm, Christmas this year sucks. I don't expect Bill to be home and even if he does make it home for Christmas, our trip to Chicago is cancelled. With him in the hospital it will be me getting up Christmas morning and fixing myself a cup of tea, just like every other morning. I may be able to run over to our daughters for a few minutes, but I will be at the hospital by 2. Not that Bill will know the difference but I will know.
I do hope you have a nice day with the kids. They are old enough to understand what is going on and should understand. It's not the Christmas we always wanted for our kids. May God Bless you and give you strength. May He give us all strength.
Oh Betty, you are so right. I know putting Ralph in a home a little over a week ago was the right thing to do, it is much harder on me than him. He is adjusting. His doctor told me in October it was time to place him, for my sake. She told me not to feel quilty, but that is impossible even tho I know I should not. Darlene
I am thinking of you all this morning, it amazes me how we all find the strength to deal with our situations. My Dr told me to look into placement in September, I could not deal with so many aspects of it so I did not seek a bed until early December,they told me I could have a spot in Jan or Feb, I chose Feb. I now have tried to change the "spot" to Jan and it looks as if the earliest we will get in is Feb. I have gone and spoken with both my Dr and a counsellor and the common thead from both is that I need to look after myself and let the proffesionals look afte Jr. We really are doing the best thing when we place our loved one, they get the care and stimulation that we can not always provide at home and we get to still be the cargiver and decision maker for their care. Kathy
Kathy - please explain the asset situation that medical will take? Do I need to move everything out of his name so I won't lose my home? I think that I will be fortunate? for lack of a better word, and that right now the doctors are putting this all through as PTSD (Post Traumatic Stress Disorder) that he is getting treated for through DVA (Dept Veteran Affairs) and if it all goes through then they will pick up the tab. But I am worried about what else the gov't might beable to go after and how to protect myself....a womens biggest fear is being a bag lady in their senior years. Thanks for your help.
This must be such a tough time for you with putting your DH into a NH. Just know as someone that does caregiving as an occupation that all the people I have ever met do this calling because we love it and want the best for the people that are in our care. We also have far more energy and resources than someone who is doing this 24/7.
Amber: You have to talk to an elder law attorney in your state about your future assets. Each state is different, but every effort is made to see that you won't become a bag lady. Most states that I've heard about have a policy for the wife to keep the home. I'd stick w/the VA as long as possible, they have some great programs.
Betty - Thank you for your input but I live in BC Canada and the system is different here. We have universal health care and have alot of the expenses paid for. Yes we are fortunate.
Kathy is also in BC Canada and is ahead of me in this process and is able to answer some of my questions and let me what hurdles are ahead of me.
Hi Amber, sorry for the delay, we went to see my parents for a couple of days. I have taken everything except for a piece of property out of my husbands name. I am still waiting to hear from the social worker and will let you know as soon as I know. I would go get a power of attorney, mind you that only covers financial matters, has no legal binding over placement or other medical issues. If you are still able it would be good to talk to him to find out what his wishes are when he is placed, they will want/need to know about recesetation and also life support. If he is not able to let you know it may be an idea to talk to the children if you have any. I was very taken back when I had to sign those papers, luckily we had discussed it in the past but it was still hard to do. thinking of you. kathy
Thank goodness we had the "what if talk" years ago and I know what his wishes are and vice versa. I still am able to talk to hubby about most things. I have everything transfered into my name years ago because of his business. I also have the power of attorney and I think the one I have also covers any medical decisions, I'll have to go and check on that one.
I was talking to a friend and she was telling that if there is anything in his name at his passing the the fed gov't will go into probate with all your possessions and there is an incredible charge for it.....25% I think. I'm going to look into this as well to make sure the gov' doesn't get a big piece of my estate. I'll let you know what I find out.
Hello Amber I am curious to know how that works also, maybe I should try to get his name off the property now also.....hmm good to talk to someone in the same province as the rules then apply the same. What area to you live in? I am north of Prince George. Kathy
When you sign up for this board, your e-mail addresses are not sent to me. The only way I have anyone's e-mail address is if they write to me. If you have e-mailed me, I don't have it under the name, Amber - I looked.
Both you and Kathy would have to send me an e-mail, so I have your addresses. Then I could send both of you e-mails with each other's addresses.
Sorry, I know it's convoluted, but I think the Vanilla Forum (that's the official software for this board) does it that way to protect everyone's privacy.
I'm going to post a topic about this so everyone will be able to refer to it.