It's been four years since DH was given the AD dx. Synopsis of my emotional journey: First 18 months, a hopeful "can-do" attitude followed by intense crying and grief and the inability to even talk about what was happening; next 18 months, fury, rage and repulsion at my DH's failing brain; and this year, deep dark depression lifted with a steady dose of Prozac and a bit of acceptance, the decision that the only day I have to be happy is the one I'm in, living day-to-day.
But now, for the first time, I'm really seeing crazy dementia. Until recently it was confusion, a weird passivity, gloominess, depression, repetitive questions, and certainly memory problems but he was still my DH, just diminished. This downward cycle started with him asking about how much time he has left and comments that he was going to die in a couple of hours. It was awful because before then he hadn't ever worried about what was happening to him and I was grateful for that. Then the anger, the intense anger at me for ... I don't know what. He started saying how he never thought I would do this to him and who did I think I was. Strange circular speech about the people over there and how they are doing bad things. His eyes go all flat and he stares at me. He snaps out of it and doesn't remember it but it is starting to be worrisome. He often jumps up and says he has to go now and heads to the door. We both caught a bad virus going around SoCal and one night he was up until 4 in the morning, burning with fever and trying to peek under my sleeves and watching the trails that his fingers made in the air while he talked to and answered himself. Truly delirious.
Antibiotics cleared us both up but I made an appointment with his doctor. I wanted her to hear how he talks now -- how he crosses his fingers into what I call lobster claws and hopefully how upset he gets. I watched her face get red as he talked (it must be really bad if a doctor is shocked) but she prescribed Ativan and said I could email her if I wanted to add Seroquel. She apologized that Kaiser doesn't offer any special services for AD, but said that if the behaviors got too bad, we could go to one of their psychiatrists for med adjustments. She also said that she couldn't and didn't even want to imagine what my life must be like now. Used to be a kind word would turn on my waterworks -- I got nothing now -- I told her thanks and that I couldn't believe there was so little help available. I said if he had physical injuries as serious as his mental ones he would be in an ICU. She agreed and apologized to me, then turned to gently tell him he had put his shoe on the wrong foot.
It's been two days on tiny doses twice daily of Ativan. He seems better but tonight had the most intense anger session I've seen so I think it's too early to tell. I was going to give it to him on an as-need basis but now I think I'll do it three times a day and see what happens.
My goal has always been to try to keep him at home with me. This is the first time that I've thought that might not be possible. I've got an appointment with our elder law attorney in a couple of weeks to discuss qualifying for Medicaid. It may not be this year or the next, but I want to start the process now. This has been so hard already and from what I've read here, placing him might be the hardest part yet.
He just turned 60. I am 58. We married in 2001 and had only a couple of years before his behavior started to get strange but we didn't know why. His last day at work before disability was December 21, 2010. I've been his caretaker alone until this year when I've started to hire help. We've already burned through our savings and have moved on to drawing from modest retirement fund. When the caretaker is here (10 hours a week but expanding to 20 in August) I have to work. I would say that I'm exhausted but I can't really tell. I think often of the phrase "beating a dead horse." I just can't feel those kicks anymore. And yes, I know, I MUST take care of myself. Hold on, I'm adding that to the list.
It seems that most of the people posting on the board are widowed or have placed their spouses. But I'll bet there are a bunch of lurkers like me who are still in the thick of it at home. God save all our souls on board the USS Dementia.
I so identify with all you have said, but you are incorrect about this board being mostly widows/widowers or those who have placed their spouses. I would say that you may be reading more from those who have placed their spouses because the experience is so traumatic that we need to discuss it. Myself included.
If you read my most recent blog series about my own evolution (still on the home page if you want to read it) as I traveled the Alzheimer road, you will see that your experience is very similar to mine. The initial "can do" attitude; the shock of the reality of Alzheimer's Disease and the fighting to get back the husband I had before AD; the fighting and struggling to get him back; the acceptance that he wasn't coming back; the depression - it's all there. You are not alone.
Knowing what I have been through with the rages, the violence, and the medication adjustment to "even things out", I honestly don't know how you can do it alone. Sid was already in the nursing home when we had to go through the medication adjustments, and believe me, he needed professional monitoring. I don't want to alarm you, but I do want to warn you to be very, very careful with the Ativan. That is an extremely strong medication, and should be increased in the smallest doses possible. He was given way too much of it at first, and he was almost comatose from it. I had to lift his head and open his mouth to get food into him. It was a very tricky process and took two different doctors prescribing two different medications to get the balance where he was non-violent, but also not zombie-like.
If all Kaiser has to offer is a general psychiatrist to handle the psych medications, you may want to consider making an appointment with him/her. I'm not going to get on my soap box about what a travesty it is that they have no specialists in dementia.
I am sure that more of our members will be along to offer suggestions and advice as well as emotional support. We all do understand what you are going through.
Hi Bunny--I took care of Larry at home from the first subtle, early signs in 2000 until his death at home with me Sept. 2, 2014. I don't even know where to start in detailing that exhausting, heartbreaking, life-draining, money-pit of a journey that ended with four months of Hospice care at home. Your goal, I think, (besides just staying alive), will be to get him the care he needs without impoverishing yourself financially. Stay in touch on this forum, because you'll get better support and advice here than anywhere else.
I am one of those spouses with my husband still at home. Its been 2 and a half years since his "official" diagnosis, but I knew there were problems long before that. I was quite active on this site when I first discovered it a couple of years ago, but for the last couple of months I have not been active (only lurking from time to time). The reason for this was that my DH had plateaued at a "pleasant" spot, and we had hit a routine that suited both of us. But that has recently changed, so I am back. One of the reasons that I think my DH plateaued was that I took him off Lorazepam - I think it was escalating his symptoms, and he was more dopey. Originally he was getting it ( a very small dose) to settle him down in the evening, and to help him sleep. Well, it might have helped with the sundowning, but it didn't do anything for helping him to sleep at night. So I took him off it. At the same time I did this, I also got 4 more hours of in home caregiver support, to allow me to go out and "have a life". So although I can't say for sure, I think that the combination of more caregiver hours, which made me happier and less stressed, and his going off the Lorazepam were responsible for the plateau. But recently DH has started a downward slide - more delusions, increased difficulty walking, more memory loss. I don't know how much more I can take of this.
I am with you on that Dementia ship. God bless you.
Bunny, I have said the same thing you did at the end about the majority posting here are ones whose spouse has passed or are placed. Very few post from spouses who are still in it. I have gotten a good education, more than I ever want to know, from this site which will help as he progresses. My husband has been on this slow decline, nothing really to 'write home' about - just a loss here and there. Either that I adjust as the changes happen so don't really think about them.
I do appreciate those that have 'gone on before us' staying. Seems like lately the reading here has been another wave of passings so the post we do are 'sorry for your loss' when in reality I wish it were mine not theirs - especially for those who had great marriages and the loss is so painful.
I've followed all of your posts, Joan, Elizabeth, Bonny and Charlotte. I know what you mean, Charlotte about the lull. I think we've stepped onto another level so now I, too, have something to talk about. My son moved in with us about a year and a half ago, mostly to be an emotional support to me. When I told him DH's first words this morning were "I have to shoot you, you know," he said it was time he and I had "the talk." I just can't believe that it's time already to think about placement. I appreciate your warning about Ativan, Joan, and will take your advice and make an appointment with one of their psychiatrists to start drug monitoring. I hate how it's left up to me make these life-and-death decisions. I've always known there were only a couple of reasons I would place him -- one was his safety and well-being and one was mine. We're racing to see which comes first. Here's to a gentle wind at our back today. xoxo
Oh my heart started pounding Bunny's Lamb with the line, "I have to shoot you, you know."
My husband calmly started saying those things to me and the first thing health care professionals said when I reported it, "Are there guns in the house?" There weren't but they were firm had there been get them out of there.
The catalyst for my husband eventually being taken by police to the hospital never to return home was the calm threats to kill me and himself. The two years prior to that end where terrifying where my whole focus was one of trying to keep us both safe.
Once my husband was in care, it took me months to start to feel safe in my home. I fully support you in having the talk. Take good care.
Bunny you mention Kaiser - my sister who has vascular dementia, her doctor flat out told my brother that he does not want to deal with our sister yet won't refer her to another doctor.
About Kaiser - My sister had vascular dementia, had the same doctor that I had and he took care of her very well, monitored her meds, talked with the family, etc. When DH had AD, I took him to Kaiser for all sorts of tests and had a doctor, (I think she was a psychiatrist, it's been so long) who kept tabs on his meds, etc. I spoke to different docs for different things there, including the one who told me, among other advice, to always look for a way out of a room if I'm alone with DH who said, "I could kill you!" It may depend on what program you have, I had given them our Medicare cards, but sister had not.
I know I've been to some classes and meetings--long, long ago--for dementia/Alzheimer's, but don't know what they have now. It may also depend on the location. Look it up at their website for your area. I don't know of any specific dementia/AD program they may have, but they had things that helped me--and every little bit helped. At my location you can always ask for another primary physician.
My DH got very paranoid and delusional. He never said he was going to kill me, but I saw that flat look in his eyes and was very afraid. I realized it was time to place him when I didn't feel safe with him there and he was always trying to get out. No way would I have been able to stop a 65 year old man. He was not comfortable in his home, in the world and, in fact, in his own skin. Dr's kept telling me that I could give the .05 Ativan 3 times a day and then "as needed". I had no idea what "as needed" meant. I found that the more I gave him, the worse he got. That's when i decided that I'm not going to play the Dr. in this case and nothing I could do was helping. I placed him 2 years ago. He immediately got calmer, because the real world didn't intrude on his life. Not saying he loved it there, but he was calmer. At first he was in an ALF, but then I found a dementia specific ALF and he has been there 1.5 years.
They took him off of Ativan and put him on Neurontin/Gabepentin. That drug has reduced his anxiety/agitation very well. Once in a while, when behaviors worsen, they increase the dosage, but he's still not at the highest levels and it works well for him. I'd asked if he should be getting Serequel, but I was told that this anti-psychotic is much stronger, with possible strong side effects. They wanted to try Neurontin first and, thankfully, it did the trick.
Although my husband is not at home anymore, I remember vividly the fear, confusion, heartache and helplessness I felt. We are there for you whenever you need advice or want to vent. Take care.
Bunny's Lamb, my husband is still home with me...like Charlotte's husband, Dan has been declining ever so slowly. He was diagnosed in 2010, but as most say, there were signs before that - just never even considered Alz. was looming large on the horizon! He's only been threatening toward me a couple of times, a long time in between those, & I usually don't feel I'm in danger. At least not yet. I am noticing though he seems to be declining more - not big dramatic changes, but many smaller ones. A few times I haven't been able to understand what he was saying, I'm finding more things misplaced, more confusion, less understanding of what I say (not that there's a lot of conversation around here!). It seems to me that his body is becoming a little rigid (that's the only word that comes to mind). He has a terrible time getting in & out of the car, getting up from a chair, walks differently, kind of shuffling but not severely so. I try to enjoy the quieter days (this past Sunday was one of those). He can sit on our front porch now that the weather has finally gotten warm & he really seems to like just sitting there watching whatever it is he watches (sometimes just stares at the floor!). Bought a porch rocker & I think it's going to become "his"! But that's okay. He isn't on any medications at this time, except those that he's taken for years for cholesterol & diabetes (recent). He takes a low dose of something to calm him twice a day (can't think of the name at the moment). I guess each day I feel the little cloud over my head, a sense of foreboding waiting for a more drastic change. Always waiting for the other shoe to drop.
Bunny, you mentioned that your son has moved in with you to help out. Our youngest son recently moved out to live in Tokyo! I felt better knowing he was here with us, but I have adjusted. I think it has affected Dan though - he goes through spells where there are a lot of questions, repetitive of course. Then it calms down for a while, then it starts again. We have another son close by who will be here in an instant if I need him, though.
Thanks for all your good advice and for sharing your experiences. I really appreciate hearing what state your spouses are in. I've read all the literature but it's still difficult to know exactly how far along he is and if what is happening to us is following some kind of bizarre pattern. I know, every AD patient is different, but I guess I just wonder if I'm a giant drama queen or in complete and utter denial. I might bounce between the two with alarming ease.
Mim, tonight was a night that I was so grateful to have my son at home. On our walk tonight, Jim tripped on the curb and fell hard, hitting his head and his face on the sidewalk. He is on blood thinners so it was a huge bloody mess. Fortunately we were only a block from home and our next door neighbors were driving by and stopped to help. I think I might have yelled really loudly when he fell. I heard him trip and turned to watch him fall in excruciatingly slow motion. I knew he was going to hit his head hard but there was no way to get back in time to help him. You know how they like to follow a couple of yards behind. Jim was bleeding badly, the neighbors were trying help, our little dog was very excited and torn between seeing if her dad was okay and saying hi to the new people. It was hard to know what to do so I told them he has Alzheimer's and to stay with him and the dog and I ran home, then my son ran down to help Jim while I got the car.
Because of the blood thinners and the hard hit to the head, he needed to have a CAT scan. We were in the emergency room from 9 pm to 1:30 a.m. His nose is badly swollen and cut, the inside of his bottom lip is cut and purple and he has a bad cut on his chin, along with minor bruises and abrasions. He was confused about what was happening, where we were and why we were there. But as I leaned over him in the ER bed to wipe away some of the blood, he looked up at me, gazed deeply into my eyes and said, "you are just so beautiful."
This g.d. disease lifts you high only so you have farther to fall.
Oh, how I hear you with that last statement! My SIL called the other night and while we chatted, I knew that DH was practicing what he was going to say to her, because like Mim's husband, he has difficulty articulating (no conversation in our house either). At some point after I handed the phone to him, he said to her " I don't know how Bonnie puts up with me". Broke my heart.
Mim, I think you and my DH are at about the same stage, with the same types of symptoms. When you described your husband, you could have been describing mine. Except the day care center that my DH goes to has insisted that because his balance is so bad that he use a walker. And the other new thing (besides more confusion) is that his hands have started to cramp. They get quite painful and he sometimes has difficulty holding things. You reminded me of that symptom when you used the word rigid.
Bunny sorry about your husband's fall but I am glad you did not try to stop his fall. All too often, the person who steps in to try and 'break' a fall ends up hurt and that is the last thing you would have needed.
Yesterday I was up, to the hospital for the colonoscopy and back home before he was even up. He didn't even know I had been gone for 3 hours. We have very little conversation in our house too unless he gets irate at something on TV. We like Dancing With the Stars but he can not stand Bruno. Every time Bruno speaks he starts in how they need to get rid of him. I keep telling him fans love him - why I keep telling him I don't know since he doesn't remember!
Bunny's Lamb, Sorry to hear about your husband's fall. Your story was so touching - it brought a tear to my eye when he told you "how beautiful" you are. Hang on to those special moments.
Bunny sorry about the experience with your hubby's fall - I hope he's doing better by now. I suppose we need to think about things like that happening, but Dan falling has never occurred to me! He had his doctor appointment today & physically he's doing just fine. I think I should be grateful that he doesn't have physical health problems on top of the AD - I know many people here must deal with both. We went for coffee & a sweet treat (as usual!) afterwards, picked up a couple of things at the grocery store & went home. Once in the house he wanted to know if I wanted to go out for a coffee!! Sometimes I don't know whether to laugh or cry. Mostly it still astounds me how bad the short term memory has become (even a little of the long term at times). I do think it's so sweet that your husband told you that you are so beautiful....unfortunately I've never heard that from Dan & never expect to now. Oh well...
Thanks everyone. He has tripped a couple of times before but this was the worst one yet. Charlotte, I think about your advice all the time and try to keep it in mind. But thinking back on last night and what happens to my brain when it is flooded with adrenaline I'm not sure I could think clearly enough to not try and break his fall. My hopped-up focus was intent only on saving him -- shoot. That's pretty much what my brain is always focused on. And what a hopeless cause. But still.
Tonight I helped him shower, brushed his teeth, put on his underwear, rubbed ointment into his scrapes. As I was putting his cpap on and tucking him in, he said, "You really are the best girl and I love you so much."
See, that's why I just can't imagine him going to a nursing home. When he isn't furious with me he is so sweet. Okay, I don't want to get maudlin but this is what I tried telling the therapist when I was looking for help. Why my loss feels so enormous. That he was the only person in the whole world whose love I could feel. It was amazing and precious to be loved and feel it. It was over forty years into my life before I felt loved and I'm pretty sure I'm not going to ever feel it again. And my love for him was complete. He was unique to me like the rose is to the Little Prince. He was a great gift that no one had ever troubled themselves to unwrap. From the first time we met, we were inseparable. Putting him away from me feels so wrong, deeply wrong. But I'm experienced enough to know that many times doing the right thing is going to make me feel very very bad.
Mim, it wasn't too long ago that we could still do normal things like get coffee and a treat. And I remember wondering how does it go from a major but manageable memory problem to having to be institutionalized? Like I remember wondering before I met Jim how do you meet a total stranger and have them become your family? I still don't know. A little at a time maybe. Or maybe it's just a giant boulder rolling down a hill, unstoppable until love or devastation is complete.
Thank you, Moon. I try to savor the sweet moments but I feel so ... no, I don't feel much. His hatred and his love, his anger and adoration don't mean much anymore. In order to along with his craziness, to not fight, not argue, to agree with every inane and nonsensical pronouncement I had to let our true connection go. I think he would love anyone who was kind to him, who tenderly wiped him, who stroked his balding head and held his hand. It just happens to be me. Of course, I accept his sweetness but it is just an echo, just like his fury is just a shadow.
I feel your pain Bunny's Lamb. My husband of 56 years thinks I'm his "friend" and says he loves me. In the next breath he is asking to be taken "home" where his wife lives. Sometimes he wants to know who I am and why I am in his house. It's hard to know what to say to him.
You wrote "See, that's why I just can't imagine him gong to a nursing home. When he isn't furious with me he is so sweet". I can't relate to the first part - my DH has never shown any signs of aggression or anger towards me since his diagnosis with dementia. He is just so incredibly sweet, and I have told others, as recently as yesterday, that this is what is making it so difficult to make the decision to place him. I had several lines in the sand when he was diagnosed as to how long I could keep him at home. Incontinence - we've crossed that one, although he still toilets himself. Not knowing who I am - we aren't there yet. Anger or violence toward me - not there either. But should I wait until his frustration filter is gone before I make the move? He does express anger to others - usually other drivers when we are at a stop light, and sometimes he expressed frustration about our caregivers to me, but not to them. Should I wait until his anger is more direct? Or should I just admit that I am tired of playing this stage of the dementia game and I want to get on with the next level.
I keep being told "be kind to yourself". Yeah, right. How can you be kind to yourself when you know that making the decision to place or not to place is going to cause pain, regardless of which side of the mushroom you choose?
Bunny, my husband is still at home too. He has behavioral FTD and has been a handful for the last 10 years (dxd in 2008 but lots of strange/threatening behavior before). My goal too has been to keep him home as long as I can; fortunately he has LTC insurance which helps to pay a full time live-in caregiver, but only reimburses half the cost. I'm not complaining, actually I'm grateful but we're going through our savings very quickly.
My husband is on Seroquel and Gabapentin and both have worked well for managing his anger and behaviors. He also has Ativan as needed and Clonopin both are in the same drug family. His geriatrician told me that if we need to control behaviors quickly that we should use the Ativan and that Clonopin was a slower acting med. Luckily he's not had any reaction to the Ativan but we do use it very infrequently. Several members here have reported in the past that Ativan only worsened the agitation and restlessness.
Make sure you watch your husband closely after his fall and head injury to notice cognitive and behavior changes. My husband fell and hit his head on brick steps 1.5 years ago. Although the CAT scan was negative, he absolutely had cognition changes...he could only speak a few words, less understanding, etc. I believe it was the fall and head injury that catapulted him into stage 7.
Seems like I'm very fragile these days but his comment "you are so beautiful" made me cry....for him, for you and the rest of us going through this torture.