ruthel, I always say "I'm the person he loves to hate" and my DH is still home. He is good with other people, but left alone with me, he constantly controls me in some way....constantly trying to get out the door, destroying my mail, trying to hurt the dog (who is my beloved animal) and even sometimes trying to hurt me by squeezing my hand too tight. I believe it's his way of letting me know he's mad at me because I now control his life for his safety. Yes, I treat him like a child in many ways so he can be safely cared for but somewhere in that dying brain I know he resents it, particularly from his wife. My sister refers to me as his jailer. Which I guess technically I am.
I mention this because perhaps your husband is angry at you for placing him in a different facility which is unfamiliar and he hasn't gotten to know or feel comfortable with the staff and residents. As spouses, we shoulder the responsibility and the burdens...our spouses see us as limiting their freedoms (which we do), but cannot comprehend how gut-wrenching it is to make major decisions all by ourselves.
I hope given time he will adjust and respond better to you and your visits. This is truly a horrible disease for the person and the caregiver.
ruthel and LFL, I am going through this lately with my DH. I haven't changed his facility, but he is frequently very hostile with me when I visit. Much of his frustration is his inability to communicate, and he seems to blame me for not understanding what he wants. He is still pretty good with the staff at the memory care center. I thank God for that. I would rather he get along with them than with me, since he has to live with and rely on them for everything. I spoke with the Hospice social worker about this issue, and she said it is very common, one of the most frequent things spouses tell her. At least we are not alone in this, although it adds another layer to our suffering. Hugs, Joni
LFL, yes it truely is a horrible disease for the person and the caregiver. Here is is about 4 days till Christmas and I am feeling little if any joy and happiness. I am so tired of grieving. My husband has been in ALF for about 16 months and has adjusted. He is mostly agitated cannot seem to sit for too long. He has declined quite a bit in the last month but still knows me and is still walking and eating. This is supposed to be a happy time and all I feel is isolation, depression and constant foreboding of what will happen next. Just going through the motions even tho I have a wonderful supportive family. I hope all here on this website have some peace this holiday season.
This is a season of rejoicing! For the Christians, it is the birth of the Christ Child, for others it is the start of another year of new joys, and hopes and dreams. For the victims of Alz and dementia, it is only a trip into the more mists and shadows of their lives. For we, the family and caretakers are also victims of the same disease, and must watch our loved ones draw away from us in spirit, if not in body, it is only more heartbreak.
We know they will never recover what has been lost as they watch the world they once knew but don't understand what has happened. Where is the man who could do anything, who had interest in everything, who could laugh and tease, whose children admired and tried to mimic him in all ways. Where is the man I loved more than life itself for over 60 years, who was more than my better half, but who made me whole. I've loved every minute with him, and now suddenly, I have to almost force myself to go to the NH to see him. He is angry with me and won't talk to me, or let me help him. He sits and just stares ahead. He is unable to read (a voracious reader in his previous life), cannot hold a conversation, has no interest in anything. I so want to take him in my arms, like a child, hold him tight and say "It's ok, it will be better soon", but we know it won't!
I am thankful that I still can see him and that he looks healthy, which overall he is. He is not laying in a hospital bed hooked up to wires and life saving devices or suffering body wracking pain. He still recognizes me and our sons. For that I give thanks.
I have great faith in God, and pray daily for His help to understand that this is just another part of life on this Earth. But as I watch others excited with the prospect of Christmas and looking forward to a New Year, I cannot help but wonder what it is going to bring for my husband and me. Will I still watch him fade further into the distance, while I sit next to him. Or will he leave me entirely and move into a more perfect world. I am torn between wanting him to live or die. Am I being selfish? What do the words of Merry Christmas and Wishes for a Happy New Year mean to me this year? I smile and accept the words, but in my heart they are meaningless. This is his first holiday season in a NH. How can one be joyous when we know he will never walk out of there again. Where is the joy of Christmas now?
Hi ruthel, The first paragraph of your comment says it all for so many of us. Your situation is obviously more difficult because your husband is angry at you. Until I read your comments and those of LFL and Joni, I did not realize that this is not uncommon. Just another twist of the knife, so to speak. I wish some psychologist would make himself/herself useful by studying this phenomenon and coming up with some practical suggestions that might make your husbands less resentful.
As far as whether you want your husband to live or to die, we all have those thoughts, but there is no point in tearing yourself apart over it. What you want to happen is irrelevant because you have no control over how long he will live. Besides, thinking about this will just drag you further into the dark world of dementia. When I catch myself think along those lines, I try to nip it right in the bud.
Hi Myrtle and Ruthel, you both said what I am feeling so well. Altho this is the second holiday since being placed I just do not think I am taking him out on Christmas Day. It is just becoming too much for me. I will visit and take him some cookies and a couple gifts. You r so right when the thoughts come as to how much longer he will live. I try not to dwell on it but it is just that I am so tired of it all. I will be with my children and grandchildren on Christmas Eve but I am not taking him. Unlike your husband Ruthel, mine is compliant and except for a few times not wanting to shower he is not a problem. The latest thing is he is pacing most of the night now and not sleeping much. Going to see about a sedative but that will probably increase his fall risk. I am having hospice evaluate him as there has been a big decline lately. He can eat and walk and still,uses the bathroom but needs prompted. My dad passed from dementia and really was never incontinent. Hospice told me he might qualify as he has a lot of other things going on besides the dementia. I wish you both a peaceful holiday and we will get through this together.
This is the first Christmas in 56 years we will be apart. Oh, I will visit him on Christmas Eve and Christmas Day but only for a short time each day. I will be spending Christmas Eve with our family at my daughter's home and Christmas Day with other relatives. But I feel so guilty doing this. Oh I know I'm not supposed to but I just can't seem to help it. I have worried all our married life what he was going to think, and I'm still doing it. I can't seem to find a way to begin thinking about myself. I even got a nice talking-to by one of the aides at the home where my husband is. She said she was concerned for me; I looked tired. She said I should try not to visit him so much, that they were there to take care of him and I shouldn't worry about him, he'll be fine. Well, I'm sick now and haven't visited him in two days!
He's been in the home for three months now. I'm trying to adjust but am still having some difficulty. This Christmas season hasn't been easy. It hasn't been easy for most of you. He doesn't really care, or know, it's Christmas so why do I worry so much?
Bev, I wish I had an answer to your question about why we worry so much. Part of It is I think we think that we can give them better care and that may be true but at what cost. Also I think For a lot,of people it is a fear of being alone and focusing on them takes the focus off the loneliness. As I have said many times we cannot save them. We can only save ourselves. If it is any consolation the first few months were the most difficult for me. I do not visit as often now as I realize he really does not care and cannot remember when I go and when I visit it is terribly depressing for me so I have cut back on the visits. You are right the Christmas season is very difficult more so for the caregivers than anyone else.
Bev, your sentence "I have worried all our married life what he was going to think, and I'm still doing it." really struck me. Well, me too. The trouble is, I'm still doing it, and he's been gone 5 months. I can see him up there looking down and having something to say about what I do.
Its been a while since I last posted and my husband is still in the psych ward waiting for a bed at the chronic behaviour unit. He is next on the list so likely in Jan. He is doing SO much better that I hardly think its necessary for him to go there. But another transition could prove dicey. He has settled in nicely and gets 1-1 care, something they are trying to wean him off of as that will not be reality in the next facility. I can come and go and he is good with me leaving. I can take him out for walks or drives and he is happy. I never thought I'd get to this point and slowly I am putting the pieces of my life back. I am working a bit more, going out once and a while with friends, and feeling calm in my house. I miss him (or what we had, years ago) but an happy to have a few hours a day with him. This Christmas, I want to be grateful and not too sad. Now is better than before and I am happier with him getting good care than the last 2 years of "poop' patrol, anger sessions, and chasing him down the street. I want to put some positive spin on this terrible disease and make the best of a bad situation.
This is my third Christmas since placement. CO2, I'm with you on visiting less and totally agree that it is depressing. I will visit DH tomorrow and plan on going to my son's house Christmas Day. Hanging out with three teenage and one preteen granddaughters has just got to be more fun. I have never worried about what DH thought. I think as long as I'm not doing anything immoral or illegal it will be okay! I still worry about the care he is getting. Worrying doesn't solve anything but I haven't figured out how to stop. All present and former caregivers have earned and deserve peace in their life. I wish for all my good friends here a Merry Christmas an a Happy Holiday season.
last Christmas was spent with Dado in the Veterans home. To all of you, my heart goes out to you truly, I just wish we could live in that village we always talked about. I feel so much closer to you all than most of my friends. I hope you can find some joy, all of us I hope, we can find some joy this Christmas. I like to think of what Christmas is when I am really down, and to remember what Christ did for us. Whatever you do, whatever you believe or hope to believe, or don't believe., I just pray for some peace for you all. How very hard to have our mates away from us.
A friend of mine lost her husband this year to brain cancer. I asked her today if she is in a support group and she said yes. One thing she learned is to do stuff that her husband would go against what he would want to do, but to be confident that he would want her to be happy.
Well, what I will do with my husband this Chrietmas has been decided for me. I won't go anywhere. I had my plans all made, Christmas Eve at my daughter's with the rest of my kids and grandkids and other family members, Christmas Day with a dear cousin's family with visits both days with my husband. But, being sick with a virus has changed all that. I can't go anywhere so will be spending Christmas alone--both days. Even my kids and grandkids are sick, so our celebration tonight has been postponed until Friday.
But the worst part is I can't visit my husband. What is he thinking about me not being there, so far for four days? Does he even think of me at all? Will he be disappointed? If I call him, and that's a real project at the nursing home, will he recognize my voice with all the hoarseness that doesn't sound like the voice he usually recognizes? My daughter will visit him today but the others can't. Maybe I'm worrying too much for nothing, but it is Christmas and I want to be with him. Oh well, as we all know, we definitely can't always have what we want. We as caregivers know that very well.
I'm not sad about being alone on Christmas, I'm really not. I don't really get lonely. I have my books and my favorite TV shows On Demand and I know I'll see my family on Friday (I hope). We could get some heavy snow here today. I hope we do. I like when it snows, especially on Christmas.
I wish all of you a happy and blessed Christmas. You are all so supportive. It's a miracle I found this site six years ago. That is another thing I added to my Count My Blessings list. I hope all of you have such a list, because no matter how difficult we have it, I'm sure there are many good things we can add to that list.
Bev, the same thing happened to me this summer - I caught a virus and could not visit for five days. Since I don't have children, I arranged to have our home health aide (who he knows and who visits him once a week) to go there twice. He was fine. Let's hope it will be the same with your husband.
I hope you feel better soon. It's such a drag being sick on a holiday.
Hello, I am a relatively new poster to this site, and I see several new names with whom I have not visited as yet. My DH has been in a NH since July and I am content with that, but I dearly miss our conversations at home. We were always finding things to discuss and having no neighbors for a mile around, and no family close, I do miss conversations.
I have only visited with my DH one day in nearly two weeks. He is suddenly so angry with me and hardly looks at me or talks to me. The second to last visit he hadn't been eating and no reason for it. That further upset me, and I came home and cried, sobbed actually, for four days! Pulled myself together and went to see him last Wed. and half the residents had stomach flu. The next day I came down with it and spent the weekend in the bathroom. We have had fog almost the entire month of Dec. and I stayed home due to that. Yesterday, a heavy wet snow kept me in and now I will go with our sons tomorrow to visit. I don't know if he will even realize I've been missing. When I have asked him previousy after only 2/3 days he just shrugs.
I'm so sorry for you women who worry what your spouse will think. I truly do not think my DH realizes one day to the next and isn't able to remember further than just the immediate day. If he does remember me not visiting, I feel it may be only one day in his current mind. It may not bother him for another reason. He was a trucker before retirement and sometimes gone for 2 weeks or more so was always used to not seeing me daily. As his memory is more of 40 and 50 years ago, this may be a blessing. Don't we always try to find the blessings now, I know I do!
May Christmas Eve and tomorrow be good ones for each and everyone of you. Our thoughts are with each other, as we are all suffering together. I, too, like Bev, count finding this site to be a wonderful blessing. It feels so good to talk with others who feel as I do. No one understands this horrid disease until you have lived with it! Big hugs to each of you!
Ruthel, amen no one understands this disease until you have lived it. We had our family gathering tonight and the first Christmas he has missed. It is becoming too much for me to take him anywhere. I am visiting tomorrow and will take a few gifts and church in the morning but otherwise quiet. I never worry what my husband thinks because he is now a child and I am the parent. He is really no longer the person I married. I kind of wonder what my family thinks but the older I get I am able to,get away from that too. I am learning to do what I want to do. He is pacing now a lot in the night and my son does not think I should talk to the doctor about a sedative so he can sleep. He says just let nature take its course. Does anyone else's husband take anything for sleep-?
I talked to my husband this afternoon while my daughter was there. I couldn't go today 'cause I'm sick. I think I just confused him. Of course, at the time Santa was visiting the residents so he was pretty excited. I don't know if I'll even be able to go tomorrow. I can't bring this virus to the people there. My daughter said he was fine though, so that made me feel better.
CO2, Recently my husband started to wake up every hour. The staff let him sit up for a while and then put him back to bed and he would wake up again in an hour. Basically he was not really sleeping -- only napping. After a while he started getting very agitated in the afternoon and evening. He already had a prescription for Ativan (.5 mg.) as needed for anxiety but because of the sleepless nights and daytime agitation, the doctor changed it to one Ativan every evening (given with the evening meds about 7 p.m.). He is now sleeping through the night (maybe waking up once for the bathroom) and is much more focused during the day, with no afternoon or evening agitation. I don't understand what your son means by letting nature take its course. A sedative or anti-anxiety medication is not going to slow down the Alzheimer's. It's really just palliative care. It might allow your husband to get a night's sleep. No one can function without sleep. Why not ask the doctor what he/she thinks?
abauche, I am so glad your husband is doing better. I remember how hopeful you were when you placed him and how fast it all fell apart. It's been a long haul for both of you. I admire you for trying to make the best of a bad situation.
My husband was placed 15 months ago. He mainly talks gibberish now, went through an agitated stage last year and is now on Risperdal. It has slowed him down considerably but he seems happier. I brought him home for about an hour yesterday. Mainly he sat petting one of the dogs which seemed to make him very happy.
There was a lot of commotion with kids playing and a dog barking and adults talking. I asked him after an hour if the noise bothered him and he seemed to say yes so we took him back to ALF. He did say to me, "Thank you, I like you a lot." That is about the most coherent sentence I have heard for over a year and it was sweet.
Myrtle, thanks myrtle. I will ask the doctor. Part of the issue is that he does not handle medication change very well. But it is certainly something to inquire about. I had the hospice nurse practitioner come and look at him after he fell. She is the one who does the assessments to determine if they qualify for hospice. Of course she only recommends and the doctor decides. She just said if it were just dementia that he probably would not qualify but she said he has a lot of other stuff going on and she told me he is a very sick man. So we will see. Like marche he talks mostly gibberish and mainly paces all day and much of the night. I was told that when they cannot walk is when they are moved to the nursing home. He still knows me most of the time but not always my name. He thought one of the workers there was his son. I am glad I decided not to take him to the family gathering last night. It was loud and noisy and would not have been good.
Has anyone else read "Slow Dancing with a Stranger"?
I read it a couple of days ago and had mixed feelings. The first pages were "right on" about the onset of Alz, the associated confusion of what to do, who to turn to, searching for answers, etc.
When I read that she managed to take care of her husband and mother who both suffered from Alz., I started feeling guilt again about leaving Bill in the NH as his condition is not nearly as severe as her husband's.
In many ways, a great book. But, it seems she had resources available to her that many of us do not have. I can't afford three nurses to work shifts and help me so I can keep him at home. But, still have guilt feelings when I see/read of others who seem to manage. I don't think I have the mental/physical reserves to do it.
Hi paj, I have not read the book but it is on my list to read. But from what you said, I know I could not afford to hire round the clock nurses to help him stay home. Nor do I have the mental stamina that it would require. I have a small condo and decided early on that I do not want people in and out of my house. I like my privacy. It is okay to feel guilt. I too feel at times that I could have kept him home longer. But with every visit I know I could not have done it. The hospice nurse practitioner thinks now he has more vascular dementia versus Alz because he is still walking and eating but has huge loss of executive function. She has worked with dementia patients for 32 years and he does not seem classic Alz she said. Of course the end result is the same no matter what it is. The Tuesday before Christmas I had a breakdown, cried at the facility, cried when I got home and visited my neighbor who listened to me sob--I think it was the stress of the holiday, having to gather more paperwork for Medicaid and my family visiting from out of town. Went to see him on Christmas. he did know me right away which was different. He did not know how to open his gift and mostly talked gibberish. I am praying that the new year will help raise my spirits. We are in this together.
paj,I thought that Meryl Comer really understood what caregivers go through and I like her for that. But to be honest, I also felt that she was in way over her head when she tried to take care of them both at the same time and I thought that her mother was neglected, especially in the beginning. If it were me, I would not have let my mother stay on her own for as long as Ms. Comer's mother did. As far as her husband was concerned, as she tells it, she wanted to place him and tried to do that several times but could not find anywhere that was appropriate. She and her husband had a lot of money, and she seemed to spend a good part of it on his care, which was her choice. Most of us have a limited amount of money and we also spend a good part of it on our spouses' care. It's all relative.
Please resist the urge to compare yourself to other people and then feel guilty because you are not doing as much as they are. Staying at home is not the best option for everyone. My husband, for example, does much better in the dementia unit because he really needs structured activities and people to socialize with. If he were at home, he would not have that. However, even if he would be better at home, I could no longer manage that, either physically or financially. I actually sacrificed a lot of my physical health taking care of him, which was dumb. Fortunately for both of us (and for the motorists on the state highway at the end of our street), my knee finally gave out and I could no longer chase him down the street.
Tonight when I visited, a nurse practitioner was talking with my husband. She was from the service that consults on psychological issues. She explained that the lorazepam (a/k/a Ativan) he takes every night to help him sleep would become less effective after a while and they do not like to increase the dosage due to the risk of falls. After we talked about some other options, she suggested that he be put on trazadone (sp?), an antidepressant that helps people to sleep. (Several others have mentioned that their spouses are on that.) The lorazepam wil no longer be given every day but only on an as-need basis. I approved of this.
I guess my point is not that our spouses should be taking one drug as opposed to another but that if they have a problem with mood or sleeping, they should be evaluated and the symptoms treated, if possible. I am very grateful that a specialist was called in to consult on my husband's sleep problems.
myrtle, thanks. Good information. Talked with the hospice nurse today and they are going to try him back in an anxiety medication not sure what--she mentioned Zoloft. They started him on melatonin 10 days ago for sleep but I tried that at home and it never seemed to do much. I requested taking him off the Exelon patch because it irritated his skin and he took most of them off himself anyway. There has been a decline but at this point the decline does not bother me that much. He is pretty agitated and constantly pacing. They are hoping to curb this some especially at night. She is going to see him in a month and when I talk to her I will mention trazadone. He is not officially on hospice but he is in their navigator program and has a social worker and nurse practitioner that checks on him. I too am very grateful. I hope you had a nice holiday and were able to have some peace.
Paulc I suppose it could be FTD. The nurse practitioner spoke to the hospice doctor and he thought maybe more vascular which makes sense since he has peripheral vascular disease and nearly lost a leg prior to his diagnosis. Also I know that one of his carotid arteries is 80 to 90 percent blocked but the doctor at that time suggested not doing anything about it because the anesthesia would make his dementia worse and it would not extend his life. I do,not believe he has had any mini strokes but of course I do not know for sure and will,probably never know. Up until a month ago he had been on the Exelon patch for 6 years.
My DH has been on Trazadone for about five years. The dose was at 175 when he was at home to try to control the aggression but since moving into LTC it is now at 1.12 . They tried to drop it to 1 but he became to agitated and had sleep problems. He takes .5 Ativan morning and night and as needed. I understand that they will raise the trazadone if needed but so far so good. I couldn't believe how removing .12 could make such a difference but it sure did. I was told that the trazadone was best for this stage of the bvFTD but it will likely change as the disease progresses.
My FTD husband was on trazadone and it really only had bad side effects...he had a syncope resulting in a hospitalization. Never worked to help him sleep. Trial and error, everyone is different.
CO2, at this point the exact dx doesn't matter much, if you wish have a specialist do an autopsy after his death, that should provide that information. If he had the Exelon patch for 6 years without side effects I would guess it isn't FTD. But I don't see how a different dx will change his care at this point. The doctor's advice about the carotid artery surgery sounds fine.
One good thing about Trazadone is that the dosage can go quite high, my wife is still on a medium dose after a few years, so they can easily and safely increase her does if necessary (it will lose effectiveness over time).
That's the sign on the grass in front of my cage - I mean house. The thing is the neighbours only see the back of it because it's a billboard to me for when I'm looking out the window to see if the delivery truck with my new life is here yet.
I had a prolonged and strong anxiety attack of some kind four or five days ago where I was lucky enough to have a friend who talked me through it where I shook hard for over an hour like someone who's freezing.
I've been told to see a doctor but I already had the attack. Next time my wife is dying and her family turns it back and what I depend on breaks down in rapid succession - I'll be sure to call the doctor first. Taking pills now for anxiety I had last week is stupid.
I have anxiety because my wife is dying this last decade along with the life I used to recognize. I lay out the price of a fancy new car each year for this privilege. Now we've formally been in palliative care twice and that's pretty stressful to be jerked in and out of such a powerful thing. At 63, my wife is not going to go quietly.
There are a few truths about how my anxiety works I need to pay more attention to.
My wife doesn't have my anxiety. She probably has anxiety about coping where she can do almost nothing but I'm the only one capable of actual worry/stress/anxiety where my wife is simply unaware enough. She knows nothing else, knows no other time she was something else, misses nothing because she doesn't have the equipment to see then and now or herself in it or any of that. She doesn't stress about her condition - I do. She doesn't stress about my condition - I do. She doesn't worry about the unknown future - I do. Her life isn't a mess because I'm sick - my life is a mess because she is.
I don't mind. At least I wouldn't if I was a block of wood. And I really am willing to do this for us; but, being willing to go through this doesn't change the fact that for years now it's been me that is treated cruelly (by circumstance) and she is actually surrounded by support systems that may not be ideal everywhere but is as good as it can get.
What I've learned recently about anxiety/stress is that the same source of thoughts that I believe helped me three years ago are now my problem. I'll show you what I mean.
In the back of my mind for years now have raced thoughts about defending myself or arguing my case with those around me that have hurt me. I knew I was overly fragile and was going through horrible things and could see that standing up for myself at least in my own mind was me fighting for myself.
In the last year I've resolved and accepted numerous of those relationships mostly because they were preying on my mind too much and I wanted peace. What I didn't want to know and didn't see was that it's the anxiety that is real where the actual topics are not. When I really did let go of a past conflict and could see that issue was no longer running through my mind - I didn't see that it was simply replaced by another.
More seriously, I didn't see that along with the justified things that were crossing my mind here and there during the day there was a deeper set that I was making up. Maybe triggered by something in the news. I didn't see that going in and out of formal dying procedures and making actual funeral plans (finally) while being deeply stung by new and worse treatment by her family while having no idea what will happen to me and where on top of all that, things started breaking and going wrong in the bits of life I have. That's major stress right there.
I need to stop feeding it. I wrote to my SIL listing all the crap I think they're doing and told them I would phone the two brothers and one sister when she dies. That's it. I talked to all of them about the minimal funeral arrangements I was planning three years ago. No one voiced any issues. They are incapable of having the conflict necessary to argue any issues they may have now. The SIL apologized for not inviting me to the family gathering in July 30 minutes from my house and I accepted that. I should be able to apologize for my email melt down and be equally forgiven. Not ever going to happen. I gave them what they were already doing and want. To treat Wolf as though he doesn't exist.
This is perfect fodder for my anxiety where yet another important thing goes. The causes are real. But what I live is this underground ongoing argument where my mind defends that I feel wronged and endlessly argues that. I thought solving specific things I dwelled on would help. I didn't understand that I need to accept anxiety in my life these days and that can't be solved by acceptance of the specifics.
I feel anxiety that I feel anxiety. Think about it. Telling the person with anxiety they have it can make it worse because their anxiety begins feeding on itself. My anxiety is highly articulated because my mind works that way. It could just be a feeling of dread. I get that when I look too far down the road and don't know what happens to me or what I am as I get decrepid and die alone. In my mind dread/anxiety/stress are all in the same family.
I have new challenges with the same old patient. I'm not going to solve my way out of the emotional destruction going on here and at the NH because they're still going on. If gnawing at my SIL is the outlet my mind is ok with while I wait for that phone to ring or go and see she has stopped eating again which is coming - then I need to monitor it as I can like Ellie the board monitor (Hi Ellie) but not try to solve it.
When Dianne has 'passed' and I 'lost' her and some time has passed THEN it will be bad that my mind is at my nephew and his self serving ways for the 492'nd time. RIght now I need an outlet.
.....
I know that my turmoil about the in-laws is both actually hurtful and full of deceit. I don't want them in my life and 'in my life' meant I went when once or twice a year we actually saw them. The deceit is that flat out I actually don't care about them that much and yet I'm reacting like a screaming banshee. Stress. End of story.
The opposite of anxiety is not confidence but that will do. What's the antidote to anxiety? Confidence. We have all come this far through our own hardships. Those hardships do things to us in various ways at various times. One day it will be time to decide that it's time to live the truth that I don't want the in-laws in my life and they're no help in me finding my path anyway. Not right now.
I woke up this morning and could not sleep. I was reflecting on just how much this disease has changed me as a person. Aside from the normal things that we all experience, I find after 17 months of placement I am more isolated than ever or at least have the feeling of isolation. Being a more introspective person by nature I look back at how I used to be, carefree, able to engage with people, involved in things. I have a few good friends but at times even that does not help. I have a supportive family and friends but the fact that even they do not "get it" adds to the fact that being with "normal" people who are engaged in life makes me feel almost worse. It is indeed a comfort to know that people here truly "get it" I am just so looking forward to the time when I can feel "normal" again whatever that is. At times I felt that I needed to spend more time with people who are not related to this dreadful disease because it seemed like all my social contacts were alz related and I wanted to have a life outside of this disease but I realize that it will come but it is not here yet and for now the people who get it have walked the walk so to speak and that is where I get the most support.
I understand. I awoke at 6 am with the same anxious feeling that greets me each morning as reality hits me. My husband has not been next to me for 4 1/2 months since placement. It is Soo lonely . My every waking thought Is about him and this disease that has torn our lives apart.
I don't feel like I belong to the life everyone else is living. My friends are very supportive and try to include me In social interaction. I did spend New Year's Eve with my close friends as we usually did. I tried to resolve to Make a life without my DH in the New Year. By the middle of New Year's Day, the deep sadness returned. What will I be doing today?? Visiting my DH , feeding him cookies and milk and wondering how this could possibly be our lives. At 64, I feel heartbroken that our dreams are over.
I could't believe my eyes when I read both your comments. I lay in my bed this morning wondering what has happened to our lives. Where has all the laughter and fun gone? I spend so much time looking for things to get involved in but then back out. They're not what I did before dementia and I guess I'm not wanting to settle. I just want what I had back but that can never happen. One of my son's called yesterday and really gave me a talking to about how Dad is getting the best care I can get for him and that it is me that is feeling lost He is upset because I don't call any of them anymore and I just sit at home and mourn my lost love and life. He said " I don't care if you call me five time a day, if you feel down or lonesome call me". That is nice of him and I appreciate his trying to get me back where I was but how do I do that? How do I walk that different path from him?
I wish we could have a cup of tea together this morning. But, I'll just drink my tea and post to you.
Jazzy We do need " to mourn our lost love and life" before we can heal. I think one of the hardest things is that we live in a continuous state of mourning as this disease steals our loved one from us one bit at a time. It is a tortuous state of mourning as we face each new decline. How can I move on? Mt fear and dread of the future is my constant companion.
I do see glimmers of hope when I actually do laugh and have fun with my friends sometimes. Then, that is followed by my sad reality.
I just finished cleaning my kitchen. All the nice storage jars that sit on my counter with pastas and grains. Cleaned the stove top and salt and pepper shakers. Then cleaned all the counter top and rearranged all those nice jars. I feel better having completed that job. My fridge is moaning and groaning and I think it is going to die soon. Thursday and Firday I get my new furnace that snaps and pops. It is original to the house and really is tired. Two small jobs left and my son is coming this coming weekend to finish them. I guess I am a least now able to look at my new home and feel like it is becoming mine. The only big job left is to eventually install new flooring upstairs and down. The roads are not good so I am not going to visit DH today so I think I will put on a boiled dinner or make a pot of soup. That will make a nice fragrant smell in the house. That always feels good. Maybe some nice fresh baked bread for the pot of whatever. Trying to think positive today. The sun us shining and it is really cold. Good day to veg in house
I think it's a mistake to expect friends to understand our reality and then feel shortchanged when they don't. So what if they don't fully understand what we are going through? I have known many people who have gone through realities that I did not understand. Friends who have been rejected by their parents, given birth to seriously impaired children, seen a child become psychotic or drug-addicted, been abandoned by their spouses, gone bankrupt, etc. Although I sympathized with them and tried to help (sometimes clumsily, in the way my friends try to help me), I did not "get it." Nor could I possibly have gotten it without going through their experiences.
We make a mistake when put ourselves in one category and put everyone else in the category of "normal" people. AD spouses are not the only ones who have been kicked out of what we think of as normalcy - dinner with friends, vacations, golf, or whatever. The folks I listed above are not in the so-called "normal" category, either. It's just that their unhappy experiences are very different from ours, so they can't fully understand our challenges and we can't fully understand theirs.
The only people we can rightfully expect to understand what we go through are other AD spouses. But even among ourselves, we cannot completely understand each other's experiences. Some of us have never lived alone as adults, some have, some were married to others before marrying their current spouses, some have had happy marriages with their AD spouse, some have not. So in trying to get back on our feet, we all have different issues. But even with these differences, other AD spouses are probably the only people who we can expect to "get it."
We have to remember I think that while we have our spouses we're up to our neck and there is no time or cycles or mental state to have these thoughts. It's the opposite. We push them away to keep going.
When we place our spouse it may look like the pressure is off because the minute to minute hour after hour work has been transferred. But once they land and we start seeing they have landed all the necessarily repressed things start showing up because we do know deep down we have to solve those too - but we have new horrors in our face and in our psyche like quasi-grieving and the stark and sudden lonliness and the dawning of what's all happened and ahead.
When we think like you are thinking Myrtle (all IMO) then we're at a point where it's us that is coming to the world around us starting to make sense of it. That our problems, while huge, aren't that different from many other flavours of tragedy and that we don't 'get' their world that well either. It's the road along healing I think when we feel strong enough and willing enough to take positions about what's what around us.
That some people can't hear this or think in those terms because they're not at that kind of place right now is something I understand because I lived at every bus stop and I know that then I didn't see that either.
A powerful post for me to read Myrtle because we simply have to be part way down the road to think like you are.
Thanks, Wolf. I was trying to come up with an analogy, and here it is (although a clumsy one):
We AD spouses have all been shipwrecked on the same desert island. From our island we can see other islands in the distance, which are populated by those who have suffered what you call "other flavours of tragedy." Life on each island is different from life on other islands -- some have fresh water and low-growing fruit, some have to rely on collected rainwater, or have only bugs or worms to eat (ugh!), some might have old ruins to shelter the inhabitants. From each island we can barely see the other islands in the distance. We know something of what they are going through but since the conditions are different on each island, we don't truly understand their experience and they don't truly understand ours.
Almost everyone on these various desert islands once lived on the mainland, which we can also see in the distance. We remember what living there was like -- indoor pluming, central heat and a/c, roofs to protect us from the rain, supermarkets, cars, TV, you name it. We think of the people on the mainland as living "normal" lives.
But even within our AD-spouse island, people are different. We came from different parts of the mainland, we travelled by different vessels -- big luxury liners, yachts, fishing boats, canoes. And after we were shipwrecked, we arrived here by different means -- life raft, life preserver, swimming, or just being washed up, half dead. Some just had the shirts on their backs but others were able to hang onto their suitcases. Some lucky folks even had camping gear. So we are not all in exactly the same situation.
Neither the people on the mainland nor the people on the other desert islands can be expected to understand what life is like on our AD-spouse island (although the folks on the other islands may have an inkling). And that's to be expected.
What Myrtle said is very important but it's what Wolf said that really got through to me. Those first two paragraphs are EXACTLY how I feel right now; that is, within these past 3-1/2 months since my husband was placed in the nursing home. I feel all at sea now, don't know whether I'm coming or going, nothing seems right. I feel as though instead of getting used to the idea of him being there, it's just the opposite. I cannot stop thinking of him there. I cannot get used to the idea that I'm here and he's there. When I visit everyone there sees this happy-go-lucky person who waves hi to everyone,talks to most of them, brings gifts to the nurses and aides, and keeps her husband calm while she is there. But afterwards, when I go home, and until the next time I visit, I'm just the opposite. I don't want to go anywhere I don't have to, I don't want to do anything around the house. I have friends who want me to go out with them or call them, but I just want to be alone. Thank God I still enjoy reading my books. What is wrong with me? I don't feel sad for me, I feel so sad for him. I know there isn't anything I can do for him that they aren't doing, but I hate this. I hate it! I want so bad for it to be over.....
Bev if you read my comments just above wolfs you would find that after 16 months of DH in long term care I am just now starting to do something for me. This is how far I have come in that time. I cry ever time I leave the residence and then come home and just don't have any interest in going out. I was very proud of myself with what I did today. It's a step forward. Now maybe tomorrow will be one step back but you never know. What your going through and feeling seem to be what we read in many of the comments. I do feel alone and abandoned, I just want it to be over. I have also wondered if it will be any better when he is gone and I am no longer a Dementia caregiver spouse, or will I be just to instilled in this life that I can't move ahead. That scares me. Maybe it's not going to be any different.
Bev, try to see (for a minute) that from both being 'normal' the spouse does almost nothing but slide over to the partner's increasing needs and buries their own needs. It's transference that is necessary. When we are relieved of some of the continuous burden and some time passes the compass of overall concern for the partnership starts moving towards us. That information is horrible and takes some time of it's own to filter in.
Spouses live two bad periods. As they disappear and we are sucked in to their increasing needs. When the burden is relieved or with placement is mostly relieved - we come to understand bit by bit what has really happened. Not only our life as we know it has been destroyed but our future is unrecognizable and unwanted.
Nothing is wrong with you. You are trying to find your way through powerfully bad things. Hating how we feel is very sane because what we're going through truly is very, very hard.
That's why I harp on the fact that we are already coping. We've come through for them and we can still enjoy reading. Our worlds have been ripped up and transformed in ways we hate and in ways that almost everybody but us agrees is one of the hardest things to get through in life.
Consider not trying to solve how you feel each day but allowing yourself some comfort during a difficult time. You can solve when you're stronger and right now learning to be your own friend a little is a good thing to do.
Very good points Myrtle and Wolf, as I reflect further I do believe it is living in this constant state of grieving that is so difficult. Not so much that people do not understand. The understanding of our pain by others will not lessen it or make it any easier. The only way to deal with grief is to go through it which is what we are all doing. I am in a hibernation mode right now--hate going out unless absolutely necessary. Today the facility called and he has another bruise on his back. They started trazadone to try to calm his agitation at night but the falls seem to be continuing. I do believe he will fall and break something and that will be it. The hospice nurse practitioner is coming back in a couple weeks to see him and perhaps make a recommendation. I am not holding my breath but like all of you I just pray this will be over sooner rather than later. As you say so well Wolfe my future life is unrecognizable right now. I can only deal with each day and whatever comes along during each day. For me that is enough. One thing I do know we all have a future and the fact that it is hidden right now does not mean it will not happen.
I haven't had access to a computer for quite a while, so I haven't read many messages nor written any, until today. Much has happened since last I wrote. Bill was sent to the ER with serious kidney problems. His AL facility kept telling his doctor he was losing too much weight (he is on diuretics for CHF) and finally they sent him to the ER. He was severely dehydrated. Also, his previous doctor had him on such a high dose of 'mood enhancers' that he was nearly comatose. I wasn't sure if it was the meds or the disease, but, we know now it was the meds. Back to the present: his kidneys are normal, they reduced the respiradone and now... he seems ok. Meaning, he still has complete short term memory loss, is up most nights, and is completely incontinent - but is walking on his own, doesn't need oxygen, recognizes me and all the family, and is now asking when can he go home, he feels fine, etc. Now what do I do? He was placed 3 1/2 months ago. His previous doctor just retired a month ago and I think his 'care' was part of the problem. I am wracked with guilt now. Should I attempt bringing him home? I still work full time, but a friend who was providing companion care during the day will agree to do that again. I am so confused.
We are talking about two different but related things.
1. Why don't other people "get it"? (My theory is expressed in the "desert island" analogy.)
2. Why don't we feel better now that our spouses are placed? I think Wolf is right -- that it's because when we were in super-intense caregiving mode, we were overwhelmed by our spouses' needs and had to shove aside our own needs. We were in the thick of it and did not have the luxury of looking at the situation from a distance. After we placed our spouses, we were relieved of the backbreaking work and the constant attention to our spouses needs. But now that we have come up for air (so to speak) we have to deal with all the feelings and emotions that we previously pushed aside, plus face the wreckage of what remains. PLUS, we now have another sad burden -- that of living apart from our spouses. So it's not surprising that we don't feel better - why should we? I hope that Wolf is right that after a while, we will be able to step outside ourselves a bit and begin making sense of the world in a way that does not resemble a horror show. Jazzy seems to have done that today, if only in her own kitchen. I'm going to try to follow her example tomorrow.
Hi Darlene, I don't know what you should do, except to try to put aside the guilt. Since you have done nothing wrong, there is no need to feel guilty. Guilt will just sap your energy and make you a less effective decision-maker.
The others on this site who have more experience with caring for their incontinent spouses at home would be better able than I am to tell you whether it's a good idea to bring your husband home after you have placed him. I think someone else raised this issue recently but I can't remember on which thread it was discussed.
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REVISED AT 7 P.M. Darlene, I just found the conversation. It's on this thread. On November 28, the same question was asked by paj and the conversation went on for a week or two. If I remember correctly, paj reconsidered due to a sudden change in her husband's condition but I think yhouniey was also considering taking her husband home. I also think LFL did that. They may have some advice about that.
Darlene, having had the problem with an ALF my suggestion is to look for another one. You don't want to keep switching ALFs but you should know more now about what to look for. I suggest also getting professional help in looking for a new ALF, I wish I did that before placing my wife in the first one.
We do our best with what we know at the time. Don't feel guilty. But if you are unhappy with his ALF and feel nothing you can do to improve his care there, time to switch.
I suspect that taking him home will just bring up all of the issues on why you moved him in the first place.
I am glad his kidneys are back to normal. My father had both CHF and kidney problems. At the end anything done to help one condition made the other worse. So good kidneys will make it easier to treat his CHF.