My husband is 87; I'm 73. He was diagnosed with senile dementia/Alzheimer's 2 1/2 months ago. My emotions and moods are on a roller coaster and moving fast. Today, I find myself mad at Alzheimer's, mad at my husband, mad at the doctors, nurses, aides, facilities.
It's a horrible disease that takes everyone who loves the person right along with it.
I visit with him at NH each day and feel guilty when I'm not there. One day, he's in a very good frame of mind. Other days, like today, he's living in a world of cruel delusions and those cruel delusions are directed right at me; my fidelity, etc.
Bill and the effects of the disease on his mind are consuming me.
When I'm not with him, I live like a zombie.
But, as I tell family and friends, I'm new to this NH business, "Give me time. I'll adjust."
Actually, I've been living with this disease for at least five years and was unable to face the truth until a catastrophic event forced me to place him in the NH.
Charlotte, thanks so much for your feedback. Maybe, now, I won't think I'm losing touch with reality too.
I agree with Charlotte. A big yes. I was angry at everything and still go through many days where I am angry. I feel guilt for getting upset at DH. I don't think we adjust to this or any new stage we enter. I just survive day to day.
I felt much the same as you until I found this site and after reading the stories here there was a big change in my attitude. My feelings turned from anger to sorrow...... Not for myself but for my dear Helen and others here who had it much worse that I.
Later, I even developed a sense of pride for how well I was doing in such a horrible situation..........Please hang on here PAJ.......It sure helped me in my time of need.
Edited......PAJ, Since you're new here you probably don't know that at 93yrs I'm the oldest guy around here and it made quite a difference in my journey and my attitude. I never was angry because of the good times I was missing because I had already lived all of them and could treasure the memories. GeorgieBoy
Right now, I'm very tired. A horribly exhausting day. So, will retire for the evening and read. Hopefully, I can escape into another world for an hour or so.
Relatives and friends try to understand what we go through but no one can really understand until, to paraphrase an old saying, "You've walked miles in another's shoes."
This is a great site for support. Again, thanks for all responses.
I hope there isn't a double post - I wrote a comment & it disappeared on me!
Anyway, a big fat YES to your question! It's been 4 years since the diagnosis, although there were signs way before that. I just thought he was becoming a nasty old man, but the it became obvious there was more going on than just that.
I still have many days of anger, sometimes at nothing in particular, sometimes at everything in general. I'm getting a little better, though - more days of acceptance, resignation, annoyance. Not an easy road for sure. I'm becoming better at gauging the "mood du jour" in the mornings. I'm figuring out which days to just leave well enough alone, which days to push a little harder for something to be done. For instance, I finally set up an appointment with the lawyer to get Dan's legal matters taken care of - before, he just wouldn't hear of it. It's marked on the calender, but I haven't come right out & told him. I hope I can gauge his mood THAT day & it'd better be a good one! There will be no discussion, he either goes, or we cancel - just can't argue about things anymore. It's pointless anyway.
Didn't mean to go on & on! Have a good night's rest.....
paj, welcome to the best support group ever! We're almost entering out 7th year with this horrible disease and it certainly hasn't been easy. My husband was young when diagnosed (58), strong, healthy and violent.
Was I angry? You bet, and I still am some days. Sometimes at him, sometimes at me, sometimes at the disease and sometimes for no reason at all.
Feeling guilty for many of us is a big part of the dementia experience. Many of the members who have placed their spouses feel guilty for having placed them and the amount of time they visit. Eventually you and he will adjust to the new living arrangement, but it will take time and it won't be easy. Be kind to yourself.
I always say that I am "the person my husband loves to hate". I think the person with dementia is afraid of what's happening to them, afraid they will be abandoned by their partner and maybe just plain mad at us because they need us like they've never needed us before. It must be very frightening to be so dependent on another person.
There are some very wise and caring members on this site who are always willing to give support and helpful advice, so please visit often. George is our "senior statesman" who always has such a gentle and inspiring way of looking at things.
Keep us posted on how your visit with Bill went today.
paj - I just read your post and got the strangest chill up my spine. With the exception of your husband's name, every word in your post describes me. My husband has been in a nursing home since the end of August, and I am still living like a zombie. The only time I feel alive is when I'm with him at the NH, and then it's mainly anxiety and sorrow that I feel. And I'm really, really pissed off. I truly feel like I'm losing my mind at times. I pray for strength for all of us here.
Hi Joni and welcome to Joan's website. It's the club no one wants to join but has to. It's truly a wonderful place where you can ask questions, vent, feel sorry for yourself, etc. We all know how your feeling because we've been there too.
Yesterday's visit with Bill went fine. One of those days when he's almost the "old" Bill. Those good visits start me, once more, on the emotional roller coaster...should I try, again, to take care of him at home? By leaving him in the care of "strangers" and others, am I making the right moral decision? Would having him home give some real value to his remaining years?
Then, I recall the visits when he's raging against me and everyone and completely out of control. A recent incident came close to having him placed in, what the staff call, a secured area. Aides were placed outside his open door during the night to assure that he would not hurt himself or others in his attempt to leave the facility at all cost.
Another instance where I get angry with staff because it's like pulling teeth to find out exactly what happened. It's as though, for whatever reason, they're afraid to give us the complete truth. Can't they realize that, for me, it's better to know everything than to be at home alone and drive myself crazy with different imagined scenarios?
At 10:00 pm on the day following the incident, I'd played the guessing game with myself long enough. I called the facility and finally had the opportunity to talk with the nurse on duty at the time of the incident. He gave me the details I wanted and needed. Don't try to protect me from the truth! Evasive responses from staff agitate me. I can handle directness; I don't want nurses and staff treating me as though I'm a child who can't handle the truth and facts.
As this posting shows, I'm still riding the emotional roller coaster. Is my honest emotion guilt and getting angry at others one of the emotional evasions and outlets?
Geez! I've tried to write a post that makes sense. In reading and re-reading, I'm still not sure it does.
I think anger is an important response. It's just got to be true that when things like this happen to people that they have strong feelings about it. Surviving being a dementia spouse means learning to push our own feelings aside. Those feelings are there though and they either find releases or they pent up. The frustrations increase with time and time spent in this unhealthy state also builds tension.
I see resentment as smouldering and I see anger as a flare up. Also resentment is a defensive response - it's our opinion of what something else is or isn't doing. Anger is an offensive response. We react towards the feelings. I see anger as both an important pressure valve and an important sign that we are still human beings.
The thing about anger is guilt and remorse. Most people are conflict avoiders and almost everybody hates to admit that. Add the likelihood that the anger might be triggered by something which is the last straw and not defensible by itself (which is still valid as a human response to huge stress but won't stand up to the thing that triggered it by itself).
To stand by our partners as best we can and go through the terrible stresses is a genuinely good thing. To give up our own personage to the point we feel no reactions is not. Think of anger as a horse that needs to be ridden once in a while. And while a balanced response to our spouse's reaction should be "deal with it - I am" it's not required. An occassional outlet is though.
EDIT - conflict avoidance - the experience of arguing becomes more important than the point being made
Honestly, I don't know where I am right now as far as emotions.
Unfortunately, I've always been one to let my emotions carry me so this period in my life is the ultimate test of whether I will or will not survive emotionally intact.
Wolf, that's a good point about how we dementia spouses have to push our own feelings aside. It's the same thing that many medical, law enforcement, and military professionals have to do -- maintaining a professional detachment so they can perform their jobs competently. But unlike those people, when we start our assignments, we are already deeply emotionally connected to the person we care for. And we don't even have the benefits that enable those professionals to deal with intense situations. We can never unwind, we never get R&R, we are never off-duty, and our assignments last for years. We do not even have the benefit of the camaraderie that these professionals enjoy with their peers. (Can you imagine a bunch of dementia spouses meeting in a bar every Friday night to knock back a few beers?) The whole situation is sick.
Your description of being "the person he loves to hate" is so right on - you nailed it! The same way here, thinks I'm out to get him,or pull the wool over his eyes. He's very distrustful, always has been, which I believe comes (for him) from a lack of knowledge. He's alway been a more physical, hands on kind of person, not very cerebral, not a "thinker". I do think deep down inside he resents having to depend on me, even though he would never admit that he needs me - even before AD struck.
Paj, I'm glad you had a decent visit with him. This really is one step at a time, baby steps, then two steps backwards. We fall on our bums, get back up & try all over again.....
I've visited this site before awhile back. I thought I had things under control but am experiencing a lot of anger lately at everything. I agree that we push things back. But what do you do when you can't seem to push it back. Once, I let go and vent I then become guilty and feel horrible. Val
Val - You are only human and being a caregiver to someone with Alz is especially hard when you are so emotionally tied to that person. Your behaviors are perfectly normal - you shouldn't feel guilty, but I know that often happens. You have every right to feel angry - but at what & at whom? It's a difficult situation and the only ones who understand are here, so let it out here, no one has it all under control all the time--that just doesn't happen. You're OK, really you are.
Why are we the people they love to hate? We're the ones that truly and sincerely care for their well being.
I know for a fact that he can be a nightmare and is NOT NICE TO EVERYONE. But when we're in the presence of facility caregivers, he's so sweet and polite to them and they, in turn, tell me how nice he is and much they enjoy visiting with him, etc. Who's fooling who here? There's so much "game playing" by so many people and I don't seem to know the name of the game. That's driving me nuts too!
The game playing is yet another part of this. It's so maddening, for me, when he's so cheery & smiley to others (like the dental assistant). I guess they still have it in them to reach down inside & find that part of themselves, at least for a short while. Seems to tax Dan somewhat, he's extra quiet when we get home, like he's spent whatever energy he has trying to act the part of normalcy.
When my mother was sharing duties with her sister, in caring for their mother (that is a whole other story in itself!), my mom was the bad daughter, was even told she was the devil! Those kinds of things aren't exactly what the "warm fuzzies" are made of!
Maybe I shouldn't post for awhile since my current thoughts are so negative and benefit no one.
Very true Mim, not many "warm fuzzies" here.
I'll be sitting beside Bill, having a calm conversation although it might be one I've heard many times before. Someone will walk by and he'll be so pleasant to them, brag about what a wonderful wife he has and as they walk away, he turns to me and starts making horrible accusations.
Maybe they're hallucinations; maybe they're dreams that turn into reality for him; maybe they're memories from his first marriage.
I'm finally learning to smile, nod, remain silent or walk away for a bit. But, it adds to the lingering hurt.
Maybe I can find something positive to say before posting again.
paj, please do not stop posting on this site! Not all comments we make are for the benefit of others...sometimes they are, and need to be, a way for us to vent our feelings about our individual situations. This is a horrible disease for our loved ones; but for us caregivers as well...and in many ways worse for the caregiver. Joan's site is one of the best places I know of to come and vent and to be understood...
Welcome paj and yes anger and resentment can be overwhelming. This is a good site to land, rant and receive great support from friends who get it. Hope you find your peace within
What bella just said is important. I see venting and knowing it's safe to do as an extremely important thing here. Also there are precious few places we can be ourselves in this nightmare.
We have very sensitive feelings about everything. That's only because we're being tortured. I disagree with paj that her outlook benefits no one. Talking about your outlook with people that know benefits you paj and makes you no different from anyone else here.
I understand Wolf's comments. Looking at other posts and realizing that I am experiencing what all spouses of Alzheimer's patients go through keeps me a little on the sane side.
Right now, I'm just plain tired...emotionally and physically. Feel as though my brain is wrapped in cotton.
I think if hb said nasty things to me, even knowing it is the disease, I would seriously limit my visits - maybe once a week or less depending. Of course I did not have the 'lovey dovey' marriage that many have. Right now I can not even see myself visiting him regularly once he is out of the house. I know - cold and cruel sounding. I would only visit to make sure he is being cared for.
I just signed up to this blog today. What a wonderful resource. I have been reading member comments in the various topic areas and see mine and my husband's situation over and over. Somehow it is comforting. A quick overview. My husband Bill was diagnosed with Vascular Dementia over 10 years ago. He also has many other serious chronic health issues: Congestive Heart Failure (CHF), Chronic Obstructive Pulmonary Disease (COPD), Attrial Fibrulation (A-FIB), and diabetes - just to name a few. I was his primary caregiver for these 10 years, as well as holding down a full time job, running the household, etc. I had a friend willing to stay with Bill during the day when I was at work, and I had the 'nightshift'. Until last month, this was my schedule. Bill's health declined, he was hospitalized, and I was told he really should be in a care facility and he required more care that I could provide. Very reluctantly, I agreed. He is in a... decent memory care facility these past 2 weeks, so I guess officially we are still at the 'transition stage'. I see him almost every day, and it just breaks my heart. He doesn't rant or rave; he doesn't blame. He is very confused and and wants to know when he can come home. He is very depressed at what has become of his life. After each visit, I go home, cry a lot and wonder if I am doing the right thing. Should I bring him back home? Is this really the best? I know this is an 'anger' topic, but I just feel a very, very overwhelming sense that I have somehow failed him. I took the vow to love him in sickness and health, and I do love him still, but it is so very different now.
elizabeth* 9/2/14 Just a couple thoughts, Darlene. First of all, placing your spouse doesn't mean you're not taking care of him. You are just taking care of him in a different way. As I'm sure you'll see from the comments of others, having a loved one in a facility still means you have a lot to do in terms of keeping an eye on what is going on, and in terms of being his advocate in dealing with things. Also, nothing is ever cast in stone. You can always see if pulling together a home care plan makes sense in terms of what you can handle vs. what his level of functioning is…and what you can afford to pay for. Welcome to this forum, by the way. It is the only thing that really helped me deal with the care of my husband.
Welcome. I have only been on this site since April and it has been a life-saver.
Ten years is a long time to take care of someone with so many health problems. I can't imagine how you were able to hold down a full-time job at the same time. It might be a mistake to bring your husband home without giving the memory care facility a fair chance. Other members with more experience can probably give you suggestions on how to deal with his questions about coming home.
Please give yourself a break. This dementia business is bad enough without bearing the burden of guilt or feeling like a failure. Many people classify LTC placement as a "failure" before they even know what their circumstances will be. My own mother did this with my father and I vowed I would not repeat it, so when I learned what we were facing, I accepted the possibility that someday my husband might not be living at home. At the end of May, after seven years at home, he was admitted to a dementia unit. He is doing really well and I am doing just OK. Like you, I cry, but it’s not because I feel guilty – it’s because I miss him so much. But it does get better. And I agree, it is comforting to see that others are facing the same situation that we are. It reminds us that we are not alone.
Thanks for the comments. It does help. Yes, I am his advocate at the facility. As a matter of fact, the first time I visited him, I noticed he didn't have his upper dentures in. I asked him where they were and he said the sheriff took them when he was arrested and brought there (!) Anyway, I raised hell with the care coordinator and she had all of the staff turn the place upside down to find them; which they did several hours later in the laundry. At least they weren't 'stolen'.
Paj. Yes, it is heartbreaking. Because he is new there, I just tell him that he is there for rehabilitation and physical therapy. Although he doesn't say so, I believe he sees through this. The trouble is that Bill doesn't recognize that he has Dementia, but can see the condition of the other facility residents. He feels he doesn't belong there, as (in his words) 'they are all nuts'. I try to explain that everyone there is at a different level or stage of the disease, but it doesn't sink in; nor do I expect it to. As everyone has dealt with I'm sure, some days are good, some not so good. His Cardiologist was ready to put him on Hospice, but his PCP (primary care physician) says that he doesn't yet qualify. Says he could live another year or year and a half. Heart is at 18-20% function.
elizabeth* 9/2/14 Darlene, my DH was exactly the same in terms of not recognizing that he had any deficits. (Mental or physical both.) It was so frustrating.
Darlene, my husband's denture was stolen by his roommate and was returned by the laundry after going through the machines. It was damaged but the facility's dentist (they have an out-patient dept. that also treats the residents as needed) was able to jerry-rig it so it fit. I was not pleased and told the Director of Nursing that his "It happens all the time" excuse did not fly with me. Dentures are expensive. Because the light-fingered habits of the roommate were well-known, the staff was supposed to lock the dentures in my husband's closet at night instead of leaving them on the shelf outside the closet. Same goes for his eyeglasses. It is one thing for baseball caps and pyjama tops to disappear but quite another for an item that is costly to replace.
On the subject of dental care, I would suggest that you check Bill's teeth every once in a while to make sure they are being cleaned properly. This task is sometimes given short shrift in LTC facilities.
elizabeth* 9/2/14 Darlene, also check to see if there is a Hospice in your area that does not require a strict, firm, six-month prognosis. Some do and some don't. I had one Hospice come out and evaluate DH, but because he could still swallow without choking, they would not admit him. (He was still swallowing without choking up until the week before he died, when he went comatose and swallowing anything other than the liquid morphine I dribbled into the corner of his mouth was not an issue. So whatever.) I was surprised to find that Hospice admission criteria can vary. The second Hospice that evaluated him understood that dementia patients don't have firm six-month prognoses--they told me they had carried some dementia clients for three years--and they admitted DH and were just a godsend in making it possible for him to die at home as he had always wanted. They also could carry their patients in facilities, but that was not our situation.
Yes about the dentures. The NH occasionally cleaned Bill's dentures. He also has dental implants that helped hold the dentures in place. However, I found that I was the one who saw that his mouth, implants and dentures were cleaned and hygienic.
He's being transferred from psych unit back to NH today and all of this is going to change. I've been very complacent in dealing with situations that might seem minor to NH staff but are important to me. Bill was always very particular about his personal appearance and hygiene. It's not going to change just because he's in 24-hour care!
I'm very edgy and nervous about today's transfer. Moves are always difficult adjustments. Waiting for psych unit to call me and let me know they're transferring him so I can be at NH when he arrives.
Bill also doesn't and can't accept the fact that he has dementia. Of course not. He has dementia. According to him, he feels fine, can walk by himself, does not use oxygen, etc. This is his truth and I have stopped trying to explain otherwise. I try to "redirect" as they say and it sometimes work. Sometimes, it doesn't. We just deal with it hour by hour, day by day.
At least, I'm finally accepting the fact that it's not beneficial to him or me to try to reason with a brain that has lost it's ability to reason. It saves him aggravation; it saves me aggravation and anger.
He's on my mind constantly. Am I making the right decisions for him? Yes, intellectually, I know I am. The heart often disagrees.
The NH does not relieve us of our responsibility for their care. It breaks my heart to see so many patients who seem to have been abandoned by family and friends.
That's one thing I've vowed to himself. I am Bill's constant and that will not change as long as I have breath.
Have I sidetracked from the anger subject? Is that a "no-no"?
elizabeth* 9/2/14 Paj, I don't think you've sidetracked. Besides all the different types of anger floating around, I think anger at staff members and facilities not providing decent basic care is another type of anger many of us have experienced. You really do have to watch them. My DH still had his own natural teeth at age 89 and a half..no bridges, nothing that came out of his mouth…but the lack of oral care during his April-May stay in Rehab. was disgusting. Talk about NursesAide 101 not being done. This normally immaculate, neat man would be found with brown food blobs all over his teeth and mouth…absolutely disgusting lack of basic nursing care on the part of the staff. I could go on and on with examples of poor care in that facility and the one he was in for five days of Respite in July, but my point is that we have to be right there advocating for our loved ones, keeping an eye on things, and insisting that standards of care be maintained.
paj, I know what you mean about how heartbreaking it is to see people in NHs that seem to have no one visiting them or taking charge of their care. But don't assume that they have all been abandoned by family and friends. Some may have no family and if they are very old, what friends remain may also be in NHs.
Paj, it seems you and I are on the same wave-length... I visited Bill last night. He seemed very tired, and thus a bit more delusional than 'normal'. The delusions were violent in nature. One of the other residents was yelling at a staff member, and Bill commented that she should get a knife or a gun and use it. Then later, he was commenting on the couch we were sitting on; said that he liked it but it looked like it would be easy to use a stake and stab someone in the heart. ??? Where does this stuff come from? He didn't say it with anger, just very matter of fact.
I still question, almost every minute of the day, if I did the right thing moving him there. He thinks he's been arrested and is waiting to hear when he is to be released.
Like Paj, I know in my head I made the right decision; the heart just doesn't seem to be getting the message.
Hi Darlene, Is your husband well enough to leave the facility for a while? If so, can you take him out for a ride? If not, can you take him out on the grounds? That might dispel his feeling that he is trapped.
Yesterday's transfer of Bill from psych to NH didn't go well, as expected.
This is his fifth transfer in three months from hospital to psych to nursing home and each transfer seems to further degrade his condition.
Darlene, I know, I know. The psych ward and NH nurses told me it's better to visit before evening because of "sundowners". late in the day does seem to be the time when most of Bill's "dangerous/hostile" rants begin. Dealing with this disease is like learning to type; we have to hunt and peck.
Elizabeth, NH probably hates to see me coming down the hall or into the offices (ha). What does she want this time? The turnover of nurses and aides at this particular NH has been very low over the years, so that's reassuring. They have been pleasant about each request and try to assist. But, they have so many to care for and there are so many shift changes that info doesn't always get passed down the line.
A relative was in yesterday watching after his mother. He jokingly told one of the nurses standing nearby that he was going to start charging for the care he's giving his mother since he's covering a lot of the aides responsibility. I understood what he meant.
An aside: Yesterday, Bill again asked if I was going to divorce him. I was completely worn out and, without anger, said, "If you ask me that one more time, I'm gonna bop you." He laughed like the old Bill and said, "Oh, you wouldn't bop me." Off we went in a completely different direction. Wish that kind of response from me would work each time.
OK. I'm completely off the "anger" subject so guess I'll move back to another topic site.
It's been nice reading all the feedback and support. Thanks!
Best wishes and kindest regards to each and everyone.
Myrtle, yes he is well enough to leave the facility, and I've thought of doing that. Since he has only been there for two weeks, I am wondering if it is too soon though. What has been others' experience with this?
I took baby steps. I started the first week by taking my husband out of the unit, either to the recreation room or the lobby. After a week or so when there were no problems, we went for walks on the grounds. When that went well, we started going for short rides to a farm stand that served ice cream. Sometimes we go to a McDonald's and sit inside and have a coke. Sometimes we just go to the rec room. But I almost never stay in the unit for the entire visit since I think a change of scene is good for him. I always try to act casual and confident and give the impression that everything is normal and it is no big deal whether we stay in or go out.
Of course, our spouses all have different personalities and are at different stages of different forms of this illness. I don't think my poor husband has any idea of where he is but I can tell he does not feel confined, even though he is -- he even wears an ankle bracelet!
Darlene, from what others have said through the years two weeks is not long enough for them to adjust. It can take a month to 3 months to adjust but they will adjust. You still have a very important and heavy job: being his advocate. Making sure he is being well cared for.
I will remind you what you posted in the welcome new member thread:
but honestly can no longer care for him at the level that is needed. I still work full time and cannot find good help for in the home. For several years, I did have a friend stay with him while I was at work and that was okay for awhile, but when Bill became incontinent - that was no longer an option. Plus, Bill got to where he was sleeping during the day (friend tried but couldn't keep him awake), and so was up all night. Very hard on me to be up all night and then try to work during the day. Something had to give and I was afraid it would be my health - which wouldn't have done neither of us any good. So, I had him placed.
Remember how he was, the care he needed and the statement "something had to give and I was afraid it would be my health".
Nothing has changed has it that would make him easier at home? Who would watch him while you work? Who would be up with him all night so you can sleep?
Yes it hurts beyond words to have him gone, but you have to remember: we all know our spouse is dying. We do not have to go with them. My MIL literally killed herself caring for my FIL who also had AD. She was exhausted and worn out, died of a sudden massive heart attack. He ran to the neighbors in a panic unable to tell them what was wrong. There was no one able to care for him at home, so he was placed in the VA dementia unit. But, because he had not used VA before, he had to go into the psych ward and enter 'through the backdoor' as the doctor called it. Suddenly his life was changed. There was no one familiar to come visit him and watch out for him. My BIL became his guardian but I know he only went once a month to check on him (we live 3500 miles away) when he had a meeting with the hospital staff.
Is that what you want to happen? You bring him home, he finds you lying on the floor, can't wake you up? I don't think you do.