I am so glad that I have found this site. I have been overwhelmed by the turn of events in our lives. I have been taking care of my husband for the last several years at home. He got sick on January 1 with the flu and I had to call paramedics to come take him to the hospital. He was dilerious and fighting them all the way to the hospital. From there it just got worse and it seems like he just drove off a cliff mentally. I have agonized over this decision to place him in a nursing home because I can no longer take care of him. He is a large man and can no longer walk. This seems like a nightmare to me. When I go to see him he knows who I am but then he goes off into hallucinations and hollering. It feels as if my heart has been ripped out of my chest. I cry myself to sleep at night. The doctors tell me that he is in stage 6 of Alz.
Dellmc53 I am so sorry you are going through this. This is a great place for support and information. My DH is stage 6 also. I am just looking at placing him. Welcome and hugs
We understand and you are not alone, people here will interact with you, help you with your feelings. It is not an easy road to travel, no one wants to be here, but it is better when others support you. I had to place my DH (dear husband) because he got violent and I was getting older all the time and my health was affected. So stay here, it's a safe harbor.
I know that it probably sounds crazy but I was in total denial about my husband's condition. He is a diabetic and had neuropathy in his legs and was in constant pain most of the time. Gradually I began to notice subtle differences but I just shrugged it off. I was teaching full time and was never sure what I would find when I got home. One day I came home and his car was running and the driver's door was open. I ran into the house to find him sitting in front of the tv with no recollection that he had even been in the car. I do not know why I could not see what was happening to him. As I look back on the last few years it all makes sense to me now. For two years he slept more than he was awake, but once again I just thought it was because he was in pain. What a mean and brutal disease this is. Now it is just like a nightmare and I realize what stress I have been under. I feel as though I am having a heart attack all the time. As I have been reading the posts on this website I am beginning to understand that this is a pain that is hard to describe.
Hi dellmc, What a strange experience you have had. You must be in shock to have to face this all at once. Stage 6 is quite a way along. I'm very surprised that your husband's doctor did not notice that he had cognitive problems before this.
As you may have read in some of the threads, many people on this site have spouses who have experienced hallucinations and hollering. This is really a medical issue. Has the nursing home brought in anyone to consult about these symptoms? The poor man must be exhausted and as you say, you must be under great stress.
They are probably starting him on some meds to deal with the hallucinations and yelling. (Ativan, Seroquel..whatever.) As Myrtle says, there has been a lot of discussion about different meds our spouses have been on, and whether they worked or not. Keep us updated, dellmc53. Are you still working?
Oh dellmc53, am so sorry for what you are experiencing. Yes this is a horrible and cruel disease. You have done the right thing for him. I know that you are still second quessing yourself, but you have to let that guilt go. He is in the right place for both him and yourself. So glad that you found this site and have joined our merry band. you will find comfort and compassion here. Arms around you in a big virtual hug.
I have been to see him again. He can no longer walk or feed himself. I asked the nurses about the medications they are giving him. One of them is Ativan because he is so agitated. He seemed better on Sunday. I am no longer working as I had to quit to take care of him two years ago. I was taking him to several different doctors and he was able to talk to them at the time. When he was admitted to the hospital on Jan 2nd he was running 105 fever and had the flu. That turned into pneumonia and then they told me he had sepsis. During this whole time he was dilerious and ripped everything off...his i.v. ports, until they finally put the iv in his foot where he could not reach it. I could not believe that he went down that quickly. Before Christmas he was very depressed and withdrawn and had stopped eating much of anything. But NOBODY said anything about him having Alz.Then the neurologists were called in. They did several different tests on him and then they told me that this terrible infection could have brought down his mental functions even more. And they said he has ALZ. I knew that he had had several symptoms but I just put it down as aging. He is 15 years older than me. I am no longer in denial but I think I am still in shock. Thank you all for your kind comments. This is a world that only people who are married to spouses with ALZ can relate. I never knew this world existed.
Dellmc53. I know exactly what you are going through. My husband declined very quickly and I had to bring him to the hospital where he spent almost two weeks. He was in the Geri psych ward where they attempted to regulate the anti psychotic medications. He got worse. He was delusional and hallucinating and it was pitiful and heartbreaking. I had to select a nursing home but he decided in his own way that he was going to stop eating and drinking. He aspirated and I decided to bring him home with hospice. He came home on a Friday and died the next evening, on Valentines Day in fact. He was diagnosed with the disease only two years ago. I prayed every that God would take him sooner than later and my prayers were answered. The hell is seeing the person you love the most be consumed by the Alzheimers devil is beyond imagination. I truly wish you luck and strength during this difficult time. Please reach out with any questions. It is agonizing and I feel your pain. Trust your instincts and advocate for what you truly feel us the best course. You know your husband best. Love, Christine.
My welcome to my website to you is under the Welcome New Members thread.
Your comment "This is a world that only people who are married to spouses with ALZ can relate. I never knew this world existed." touched me deeply. I felt so alone at the beginning of my husband's disease. Everyone in my support group was taking care of a parent, sibling, or grandparent. No one was talking about the emotions related to marriage, and I was so frustrated. That is why I started this website because, yes, this world does exist, and only we spouses understand it.
I want to tell you about my experience with Ativan. In July, Sid had a medical crisis ( long story - you can read about it in the 2014 summer blogs) that ended up with him under Hospice care. He was so agitated and violent from his hospital experience that they drugged him up with Ativan combined with the Risperdal he had been taking for years to control his aggression. I almost collapsed when I saw the condition he was in from the Ativan. Non responsive; head down; not eating; not talking. I had to open his mouth to shove some food into it. He lost 19 pounds in ONE MONTH. After weeks of adjusting the medication so that most of the Ativan was out of his system, and he was only given it on occasion when absolutely necessary, he was once again "alert" - as "alert" as he could be, given his advanced dementia, and was eating on his own again.
I would suggest talking to the doctors in charge and ask that he be given just enough medication to control the hallucinations and yelling, without making him non-responsive. It's a tricky situation with medications and symptoms, and can take quite a bit of trial and error before they get it right.
As for you always feeling like you are going to have a heart attack - been there; done that. Please contact your own doctor for some anti-depressant and anti anxiety medication. I honestly would have ended up in the hospital with a heart attack, stroke, and/or nervous breakdown if I had not gotten on medication. To this day, if I was not on Zoloft, I would not be able to get out of bed in the morning. Sometimes, even with the Zoloft, I hide under the covers all day. This is a brutal disease that affects both patient and caregiver.
Thank you so much for telling me about this Ativan drug. My husband has lost 40 pounds since Jan 2 when he first entered the hospital. I had depended on the neurologists who were telling me that his aggression was so bad that they had to use this drug to keep him calm. I entered a world of anti-psychotic drugs that I really had no idea existed. I am going to talk to the dr tomorrow and see if I can find out how often they are giving it to him. I began to question them about all of the drugs because it seemed to me that this particular one just knocked him out. I do have a question that I hope someone who has been there can help me with. My husband seems to know who I am but his conversations jump from one random subject to another and he doesn't seem to know anything that is going on around him. Is this just part of the disease process? Before he got so sick we were carrying on conversations with each other. He was disoriented and would get lost in the house but he could still communicate. Now that seems to be gone. His language is often garbled and he will ask me a question and I have no idea what he has said. It is so painful to go see him and it is even more painful not to. I cannot figure out how often I should go. It takes over an hour to get there. I love him so much and I am totally helpless. I will also talk to the doctor about my anxiety because the cost of this nursing home is very high and I am trying to figure out how I can keep our house and pay for his care. I am sorry if this is rambling but I truly feel like I have been zapped to another planet.
Dellmc53, I am really sorry to hear your experience with the antipsychotics. That is one of the blessings of this website that we learn from each other's experiences. My husband has been in placement for 16 months. When he entered he was still communicating. Now his speech it totally garbled and all over the place. He is still aware of the past and his childhood but everything else is pretty much gone. It is like he talks in circles. I used to be able to figure out what he wanted but I cannot anymore. I just sit there and agree with whatever he says. My husband can no longer read or engage in TV . About all he does is pace and observe people but he does not know what is going on around him either. Everyone is different with this disease. I am seeing my doctor tomorrow. I have anxiety pills but do not like they way they make me feel. I hate going on medication but my anxiety level is high also. You take care and we will all get through this together
I can see several things going on here. (And we've all been there--you are among a group of people who "get it" when most do not.) First of all, feeling like you're going to have a heart attack. Yup, been there, done that. As hard as it is, try to do whatever you need to do to manage your own stress levels. Maybe it's to get some medication from your own doctor, or maybe you can catch a break just by taking a walk every day, drinking some chamomile tea at night, cruising the internet mindlessly…try to calm down, rest, and stay balanced and centered. (Yeah, right…I know…much easier said than done.)
Next, his placement. Can you get him transferred closer to home? Since you'll need to be there a lot, to monitor his care and the effects of the medications, it would help immeasurably if you didn't have a commute that was an hour in each direction.
Finances are a huge issue. Again, many of us have been there. (I ended up selling our home and moving to a much smaller place out-of-state to be closer to family…not sure it was the wisest of moves for myself, but it got Larry taken care of by a combination of family and a local Hospice, and he never had to be placed, although it was nip-and-tuck. I was pretty close to dropping down dead myself by the time he died.) Anyway, the goal is to get him taken care of while not impoverishing yourself. Perhaps you could tell us, if you don't mind, where you live? This group is a mixture of Canadians and Americans. If you're in the States, I'd suggest talking to an eldercare attorney…and maybe someone in your local Office for the Aging, if they have someone who can help with eldercare management issues regarding finances. You may be looking at Community Spouse Medicaid…where you spend down your assets to a certain level to pay for the nursing home, but then you are allowed to keep a certain amount to sustain you, and he gets the Medicaid to pay for his care. If you have some assets and a decent net worth, you definitely need to talk to an eldercare or estate planning attorney to figure out what you can hold onto. I'm hoping you already have a durable power of attorney, to be able to handle things like taxes, selling his car, or whatever, that would normally require his signature. But talk to the attorney about that.
Others will be able to chime in with more good advice, I'm sure. Hang in there…you are not alone in this nightmare situation.
Dellmc53, it could be the medications or just the disease progression causing the communication problems with your husband. When he drs. put DH on Risperdal he became an instant zombie-disoriented, couldn't walk without assistance, couldn't speak, didn't know me, etc. and that was 1 hour after they gave him the lowest dose possible. It takes awhile to find the right med combo to alleviate the aggression, anxiety and other dementia behaviors. For us, the drs. are always tweaking the meds used and the dosages. It's a never ending battle. They told me at his last visit that now he's in the latter stages he should be calmer and less aggressive but that hasn't happened. I'm sure he'll be difficult right to the end.
I went to see him today. He is refusing to eat. I tried to get him to but he told me that if he ate anything they gave him it would kill him.??? He said you drink the milk first, so I did and I got him to drink 1/2 glass and that was it. He is still hallucinating all the time. He told me there was a big dog under his bed and he was afraid it was going to bite him. He asked me if I saw the gun on the door. And on and on it went all afternoon. I just cry nonstop on my way home. I just cannot think of anything more painful than this. I do not know how people live through it. I do not know how I am going to live through it. I keep wondering...is this the beginning or the end?
I have learned to meditate and do yoga and that has helped some with the feeling like my heart is being ripped out. I also play the piano every day and that helps some. Walking away from him today while he was sitting in the hallway at the nurses station took absolutely every ounce of energy that I had.
In October I did get a medical directive and medical and durable power of attorney. That has helped. We live in Texas and the reason I had to get a nursing home an hour away is it was in a smaller town and costs less than the town we live in. Also it is a great place. I know that they take good care of him and he is safe. A friend of my mothers had her husband in thie facility for 4 years before he died of ALZ. I am using our life savings to take care of him now and I figure that will only last about 5 years. It was supposed to be our money to travel and enjoy life on.
I am also trying to figure out how to live life every day with much more free time than I used to have. I still take care of my 91 year old mother as well. She lives with me. Thank God she is in pretty good health or I really would be lost and undone.
Thank you all so much for sharing with me. It helps me to know that I am really not alone and so many people are suffering from this awful thing and there doesn't seem to be any relief in sight!
dellmc53 when my darling was in all those states, yes all of them and more near the end...I told myself HOW can I handle anymore, and I KNOW I just cannot face the thought of watching him die. But I did, and you know, surprising to me after almost 7 months since he passed, I see that life still holds joy. Don't get me wrong, I am in deep grieving, but as time goes by it happens more all at once, I sob and have some moments, then I am ok again.( in the first few months it was constant and almost unbearable)
I would go to the Veterans Home and take him to his room, shave him, clip his nails, give him snacks (hand fed slowly), and talk to him like he understood. He would look at me vacantly but I knew he was glad I was there. Once in awhile, I would get down on my knees in front of his wheelchair and sob in his lap telling him how much I missed him. Likely that was tough on him, but sometimes I just had to do it. Then, I would tell him it would be allright.
I tell you this, because really, the pain the hurt the anguish that was experienced was as much as anyone could bear, I loved him so. But I MADE IT!! As the 23rd of each month approaches, I grieve more, like today. Yet I know I will make it.
So please hang on. I know it is moot to tell you what to DO, but I can tell you, I believe you are in the worst of it now, so just hang on, you will make it. And when your darling moves on, he will not suffer though we do.
Coco I am so sorry to hear about your husband. Thank you for the encouragement. I know that a lot of people are all experiencing this same living nightmare. I think it is just such a huge adjustment to move to managing his care instead of doing it myself. I have to believe that this horrible sadness and grief will get better, or maybe more bearable. I went into his office today. I have had the doors closed since January 2nd. I looked at his desk and all of his stuff he had been "organizing". I found toothpaste stuck inside a sock in his desk drawer. It made me cry all over again. Such a brilliant man who taught physics and chemistry reduced to sitting in the hall of a nursing home. How can I bear it? Only time will tell. He remembers very little but I remember everything! How can life be so unfair? I fall on the floor and cry but it doesn't change a thing.
My husband has been placed for six months. I usually keep his "den- hideout" door closed. This where he had his desk and all kinds of his collections . Anytime, I have opened that door for something , it has resulted in pain and sobbing. Once I found all his little papers where he was still trying to write and spell. He lost that ability early. I found a paper with my name and under it Love always and forever. He was practicing it , I guess. Just a scrap of paper, but I saved it.
Oh, Lorrie, I found the same sort of stash of papers and notes. He was trying so hard to keep it all together - and I didn't know. I just breaks my heart every time I see these things.
I think you nailed it. "He was trying so hard to keep it all together". That is a deep pain for me. I don't know if I can truly say I didn't know or I was trying so hard not to know. But the guilt that I could have helped him during this period rather than ignoring or actually getting angry with him haunts me. I wish I had handled that stage better.
Lorrie...I experienced the same anger and frustration with my husband. Now that I realize what he was going through it breaks my heart even more. But there is one thing that I think...I was trying not to know just like you were. And perhaps there is a reason that we really didn't know until we had to. I think maybe God was protecting me from the truth until I was forced to see it. I am not sure I would have been able to bear it had I truly known for all those years that he was changing. I just shrugged it off as aging and bull headedness. I think we all handle things the best we can at the time. I try not to beat myself up for all the mistakes I made. I know that eventually I will have to deal with his office but for now I just have to close the door.
dellmc, "God made the world round so we would never be able to see too far down the road." Isak Dinesen, pen name of Danish writer Baroness Karen Blixen (1885-1962).
Good quote, myrtle, but I must add that the hindsight is straight and flat.
dellmc53 - thank you for reminding me (and us) that "we all handle things the best we can at the time," and " I am not sure I would have been able to bear it had I truly known for all those years that he was changing." That's it. We did know something was amiss, but it was all so vague.
It is all explained in the concept of paradigm shift. Nevertheless, guilt is the bully on the playground.