From the time my husband was in facilities and after, I was told he cannot have ANY caffeinated beverage...cola, other sodas with caffeine (like mountain dew, tea, etc) because of the effect on his chemistry (w/o the psychotropic meds) and with them. So he only gets de-caffeinated beverages and I actually do think it's helped controlling aggressive behaviors.
Dianne has stopped eating again. The NH is in lockdown because of the flu, she has it, has a high fever, and has stopped eating again and won't take the pills. This is the third time she has done this since November and I'm not sure she has the strength or desire to try and come back a third time.
I'm sitting here in a big snowstorm and whipping winds blowing everything around. We've had snow permanently on the ground and roofs since late December. So the doorbell rings for the first time this year and it's a lovely young 20 something trying to sell me grain fed, no antibiotic or growth hormone beef. I told her I don't eat meat like that and she cheerfully started leaving. "I hope you're warm enough" I called out as she went down the steps. "Oh, I'm a skiier" she answered radiating health in her gazelle like movement. "Wait until you're 65", I thought.
I met one of my nephews yesterday for lunch. He's the brother of the one I've been writing about and I thought he might be wanting to talk to me because of the email I sent my SIL telling her she was acting like a five year old (she's 72). Nope. He was offering me NBA tickets to the Lakers game which are almost courtside. He said he was sorry he hadn't been there for the last couple of years. I've never had a problem with people that can't and say so. It was something to be able to tell him the story from my side though.
We talked for over an hour and I came away realizing how much Alzheimer's really does isolate us and because of that makes us think in victim and defensive terms more. In so many situations this last year I can see that my torquing up the importance of every interaction is because of ten years of being battered by life and distanced from normal thoughts and concerns.
I had motorcycle guy over two days ago for coffee. He left three hours later having spilled his life story. Turns out he was born in Russia and speaks German. He's a speciliazed machinist and has worked on four continents with rich stories about all of the places. He looks about 45 and is about 6'8" and 275 lbs. His shoulders and chest are literally massive.
This is the fellow that had the big parties with live bands where the whole court was jammed with cars including the roughly half acre park in the middle. I told him that one night I watched two young people on our lawn going at it enthusiastically while Dianne was giving lectures to the mirror. He's also the fellow who's previous girlfriend crossed the street and is now living with my next door neighbour (the tomato lady). Now motorcycle guy is having his new squeeze move in with her 12 and 15 year old. Brave man.
I went through my budget and what changes not paying out the price of a fancy new car each year will make. She's paying half of that because half of everything is hers but almost everything is joint including the car and joint ownership with survival makes things easy. The only time I've used my POA is to place her into the NH. Really looking at the budget as though I was single was a shock. I'm not rich by any means, but I'm likely to have enough and that is a serious blessing in life.
In between the time I started this post my best friend called and I let him know I have those tickets. He's the one I'm taking where we're both serious fans. He had mental problems some ten years ago and when I talked about what's happening with Dianne, he told me he went to his wife and three kids and apologized to them for letting them down those years he couldn't cope. Interesting life sometimes.
He feels the way I do. I'm more than I was and demand a deeper relationship with my life than I was satisfied with before. No regrets but not interested. As I said before, I've chosen my path. I stand by my mate to the end whatever we go through now. Dianne has nothing to do with that. I've read this whole thread and it was a trip down memory lane - the new 'voice', the insane asylum, the valley of death, the forgiveness - this thread especially is where my story of Alzheimer's and what I chose about it is.
Dianne has nothing to do with EOAD anymore than I do. We faced that together but the only thing that defines about who Dianne is, is that's how she went out early. All of that decade was what the disease did to us. Once Dianne had AD, even when it was early and unnoticed, she was not allowed to be her full and true self, and therefore is un-judgeable. The only full and true Dianne is before Alzheimers and I believe we share the same regard for the disease which is that it's a form of rust.
Besides, I have kept her safe in my pocket and I have experience doing this with other important people in my life. That's where she'll be when I hit that final wall. With any luck, I'll be running at it when I hit it. When she dies I will have this to say to Alzheimers. You win. But you die right here. We do not.
Today is our 19th wedding anniversary. It was dreadfully sad, of course, my husband had no idea what was going on, and he was very agitated and slapped my hand away whenever I tried to touch him. I left after less than an hour since I seemed to be aggravating him. All the caregivers were smiling and hugging me and saying "Happy Anniversary!" It would have meant the world to me to have one of them say "I know this must be hard for you, and I'm sorry." Oh the hell with it. I'm too upset to cry if that makes sense. And even if it doesn't.
I, too, find what were once our special and happy occasions to be so painful now. An anniversary is a celebration for two..so hard to celebrate as one.
Joni1957 I know this is hard for you and I am sorry. My 49th anniversary was on January 29th. After dragging myself to the NH for a three hour visit and feeding him his supper I came home. Since the only skills he has left are walking and eating when fed I did not mention the word anniversary. Having been a caregiver for more than ten years lots of things do get easier to deal with. Being too upset to cry makes perfect sense. Hang on Joni. Sending you a big cyber ((hug)) and Happy Anniversary to you.
Joni1957, I understand also. Like Alim said, after years and years of caregiving, you quit expecting anything so it gets easier in a way. I never mention special days to DH anymore. Our anniversary is in April and it will just be another day. I did get sad seeing some of my friends getting flowers, candy, etc. for Valentine's Day yesterday. I'm not Number one to anybody anymore. The kids, grandkids and friends do care but it's nothing to compare with your soul mate.
Yes, Wolf, we're good. Your snapping did land on me for a time and I was sorry I commented but you explained and we're good. I'm sorry you're going through another trauma with Diane. We're all here for you.
I'm sorry, and I understand why it was such a tough day for you. Sometimes just being around forced festivity makes things even worse. And an anniversary on Valentine's Day....
Especially when my husband was in the ALF he was very rejecting toward me. It added another dimension to coping with his anger and agitation. It really hurt.
I am feeling very lonely these last few days as I know it won't be long before he says"Do I know you."
The LTC has been in lockdown twice in the last month. Flu or respiratory infections are the cause. Residents who have one of them have to stay in their rooms and are brought their meals. The staff called all the P.O.A's today and said we could visit if we had to but we were restricted to our family members room. Kevan told me not to come as I have asthma and know how sick I get if I get a cold. I am not able to bring him home anymore and had planned to take him out on Valentine's Day for lunch but that was cancelled. My visits will now consist of going there for coffee in the mornings or taking him out for coffee. It's really hard for me not to be able even visit but I guess it's for the best. It's also been so cold or snowy that I just haven't felt like going out. Hopefully I can go shopping later this week. I am very happy with the way they handle these illnesses. There are some residents that really need a family member to come everyday to help them and as long as they stay in their room it should be fine. I doubt if to many others will take the chance on getting sick themselves. He loves curling so I am sure happy the tournament of hearts is on for the next week. He calls me and we watch a bit together.
Joni1957 Those days that we used to make special are very hard to not be able to share like we did. We all know how you are hurting. Big hugs
Thank you for your kindness, everyone. I know this is the one place where people understand.
Now I'd like to run this by you: this morning I had a call from the Hospice Social Worker. She asked me if I was aware that yesterday afternoon my husband had gotten very aggressive with a nurse. Right away, this ticked me off. No, I was not aware, because the nursing staff knows he has DEMENTIA. And these things happen. Then the social worker asked if I had discussed anything upsetting with him. WHAT?? He cannot communicate. We don't "discuss" anything. And why is she asking me that? What should I say? And what does she want me to do? I seriously don't know if Hospice is just used to dealing with dying people who don't have dementia, or what. I know she's looking to see what might have "caused his behavior". DEMENTIA caused his behavior. THEN she asked me if I had a good time on our anniversary at the residence. I'm speechless. I said no, it was horrible. She was surprised. She asked if I told him it was our anniversary! I'm so upset and annoyed by this conversation - I tried to keep my cool, and I just said Yes, I told him. But he didn't understand. Because we can't communicate anymore. Because he has dementia. Hint, hint.
So I called the floor nurse, and she said yes, he was more aggressive than she had ever seen him on her shift. They finally got close enough to him to give him an Ativan. He was very agitated and aggressive today, too, so they gave him another Ativan. This residence does not believe in medicating patients to knock them out, so it must have been a bad episode. So now I'm frantic with worry, completely stressed out, and there is not a damn thing I can do about any of it. At least the nurses and caregivers at the residence understand that things like this can happen. I don't know what the deal is with the social worker.
I finally went to see my doctor for the first time in 8 months. He was shocked at my weight, my blood pressure, my fatigue. He didn't even know about my husband being placed. I dreaded telling him, knowing I would cry. I don't know why I cared about that, but I did. He said I have to do something to start guarding my own health, as it is clearly deteriorating. For the first time since my husband's placement, I think I am actually making an effort to do that. Today I'm seeing my therapist, but I'm not going to see my husband. I need a day off.
Thanks for listening to my sob story. I don't think I'll answer the phone for the rest of the day.
. Joni 1957, I hear your frustration. I would try to not take everything personal. having just moved my husband this morning from the ALF to the long term care, I too was dealing with the social worker. She was late 20s, smiling, cutsey and had this annoying sing-song voice. I am telling myself she has no clue--none whatsoever. I also tell myself she is just trying to do her job and tried to think positive thoughts as I am signing all the paperwork. Social workers are trained to try to find out why things happen--like finding the answer is going to make it stop. we all know that with dementia, the behaviors rarely stop. They really do not know any better. It is just the way they are trained. It is unfortunate that she was trying to at some level blame his behavior of something you did. that was really not called for. Again I blame these things on plain ignorance. Please try to let some of this roll off as your health will be affected negatively due to things that are out of your control. We all want to feel like we have some control over the care of our loved ones and I know personally I have had to "let go" of an awful lot of stuff that I could have let get to me, but I want to remain healthy and have a life after this nightmare. God bless.
Thank you so much, CO2. That is exactly what I needed to hear. You are absolutely right. I hope your husband's move went well. I will be holding a special place for you in my heart as you go through this transition. I wish you both the best!
If we let it, this disease attacks our body too. I have also NOT been taking care of my health. I gave the same Issues as you weight, blood pressure, fatigue and add anxiety , body aches and depression. After 8 straight days of visits to see my husband, I just couldn't leave the house today. I feel like I am at my wit's end. I feel scared of what will happen next. Living through this is both heartbreaking and terrifying. I hope you start to take care of you. I want to find the strength to take care of me. It is Soo hard.
CO 2
I hope this new placement will work. I had to move my husband twice after the first traumatic placement which was in August. Now, he is on hospice and there should be no other moves. It must have been a rough day for you and your husband.
CO 2 Thanks for sharing your healthy thoughts. Going to try to let go of some things. I've been holding on do tightly it hurts
Lorrie and joni1957, the move went okay. They actually moved him and I only had to make a trip to,his old room once to get more clothes. I am moving the furniture out on saturdAy with my kids. They put him in a room with a person from the Alf but tonight they called and moved him to a,room next to,the nurses station. Obviously he needs more supervision. To appearances he looks pretty good but has lost so much brain function. His vision is so poor. He is a huge fall risk but hospice told me that a walker will not,help,him because he will not remember how to use it. When he eats it takes forever as he is constantly fiddling with the napkin and utensils. He basically can only use a spoon any more. I am not expecting to have to move him again. I was told that they have quarterly team meetings which I will be a part of. I have hospice monitoring him. We will see what develops.
Glad the move seems like it will be for the best. I have begun hospice and it is proving very helpful. They respond quickly to calls for supplies...a hospital bed, special high back wheelchair, incontinent supplies, meds The Social worker is compassionate and a very good listener. They send an aide five days a week for three hours each day. I worked it out so he can be fed lunch mon thru fri.
Based on my experience so far, I find hospice very helpful.
I find Hospice helpful also. It is great to have more members of the care team keeping eyes on him, as the staff at the center is overworked and underpaid. I think Hospice has been a godsend.
I thank everyone for the replies regarding our Anniversary. I took care of my husband at home alone for 8 years before his placement. It's been years since he remembered an anniversary or a birthday, even with reminders. I've never minded it, special occasions have long ago lost meaning in a normal way. I don't know what happened to me this year, it has to just be the fact that we are separated and will never live together again. And he is so much worse. He is declining so rapidly.
When I had him at home, I was somehow able to keep a greater level of denial about his illness than I can now. I don't know how that works, it's just one of the many things I don't understand at all. Like not knowing how to start to let him go. That part I really don't get at all. I know what you mean, Lorrie, about trying to find the strength to take care of myself. I just don't have the motivation for it, I really feel as though my life is ending with his. I know in my head that's not true, but not my heart.
Joni1957, I think what you said about more denial when you keep them home is true. never really thought about that. I think once you place them at least for me the letting go process starts to accelerate. I have a friend in my support group who kept his wife home and had caregivers coming in and out with hospice and after she passed he really had a very difficult time because he never allowed himself to feel the feelings and when he did he sank into a very deep depression. They called yesterday and had to change his room again because he peed in the roommates bed. It is upsetting to me but there is nothing I can do. The activity person called and told me they are going to get him on a 2-hour regimen where the aid will take him to the toilet. I too feel my life is ending. Some days it is a real effort just to do what I have to. I still find it very difficult to go and enjoy myself. I still seem so bound up in responsibilities and when I finish that I have no energy for fun things.
Well had a meeting with the staff at the LTC facility. His big issue is urinating inappropriately and suggested I move him to another one of their facilities that has a more behavioral approach. It is a dementia unit they tell me but is not up and running yet. They feel their facility is too large and would do better in a smaller dementia unit. Of course I had him in a dementia unit before but it was considered assisted living and I was asked to move him. The one they recommend has a terrible recommendation but since he is on Medicaid I feel my options are limited. I called one place today and as soon as I mentioned the urinating they said they could not take him. I was told he needs a LTC facility that deals with behavioral issues. He is still walking, needs help dressing, eating, and his eyesight is very, very poor. Feeling a little defeated today. He has only been in the LTC for 2 weeks. Wondering if anyone else has been asked to move due to behavioral issues. The staff tells me there is nothing they can do about the urinating. they take him to the rest room every 2 hours but it is not helping.
C02, I was wondering if your husband has recently had a urine retention test? It's an ultrasound that scans the bladder to measure how much urine remains after voiding. I only mention this because somewhere in the last 10 days, I either read or heard that urine retention could cause men to urinate in corners, etc. I think I heard this from a nurse in my husband's unit but I could have heard or read it elsewhere. It could even have been on this site. I just don't remember.
My DH lives in a Men's 'Behavioral' Unit in a Dementia assisted living facility. The title was terrifying to me but his regular day-time nurse told me that she would prefer to state that it's a 'special needs' unit. There are 12 guys there and the unit can hold a max of 15. My husband likes living in a community of men and though he can sometimes be a bit volatile, he does well there. The staff is very caring of them and cater the activities to those the guys can handle. I'd much prefer he be in this men's behavior unit than the other coed unit he was in.
He too was urinating indiscriminately all over the place. I believe it has more to do with the fact that he knew he had to go but just was not clear anymore where that should be. Even in his bathroom, he'd go toward the shower or the sink, not even acknowledging the toilet. even though they'd take him to the toilet every 2 hours, that was no guaranty that he'd go.
At any rate, they requested I buy 'onsies' which are a shirt/pants combination sewn together at the waist with a zipper up the back. They cannot get themselves out of the outfit to pee all over the place which solves the problem. He didn't love the fact that they half undressed him every time they took him to the toilet, but it was the best solution for us all. Several of the guys have the same issue and it seems to come and go. I got the onsies online from Buck and Buck. They are a nice quality and don't shrink in the facility's wash.
Hope this helps relieve your mind that a 'behavior unit' is not as gruesome as it sounds - and that onsies can make life easier for his caregivers as well as you.
fiona68 and Myrtle, thanks for the suggestions. I guess I need to keep an open mind. I will look into the onsies. I agree that he does not know where to go. I am realizing his eye sight is very bad also.
Fiona68, there is special outfits that are difficult to remove, I can't remember the name but I am sure you got them since people mentioned getting them from Buck and Buck. A friend of mine had this problem with her husband and the onsie was not enough, she had to put a wrestling outfit on top of it.
I would like to respond to Joni's post about being in denial when they are home. My husband was placed in nursing home in January after a bout with the flu and pneumonia. I was so shocked when they told me he had ALZ that I really didn't believe it. I knew that for the past few years he was failing mentally but we seemed to function all right. I knew that he was incontinent and he was willing to wear Depends but what i cannot get my brain around is that I was not able to see what was really going on. I blamed so much of his behavior on what I thought was chronic pain. He went down so quickly while he was in the hospital in January that I couldn't believe that either. Now it is a like all of the pieces of the puzzle have come together and I can see the whole picture. ALZ explained everything. Now I am just in a constant state of pain . Every time I go see him it is a reminder that our lives together are over. What torture we are all going through!!
dellmc53, I understand. It's like I knew, but I didn't know, really. I think that part of it with me was that no doctor ever said he had dementia until he was hospitalized for the last time. They kept testing him and saying he had some memory problems, but no one ever said the word. So I was told he had dementia in August, and later that month was told he was too far gone to go to an assisted living facility, and he'd have to be placed in an Alzheimer's care center. My plan had been to move us both into assisted living. It had never occurred to me that we could no longer live together. I still can't believe it, and he's been placed for six months now. It just seemed so cruelly fast. And now he has declined so far it's really difficult to see. I feel at some level that I would never really have been ready for the late stages, I just always thought there would be more time. Maybe that's the only way I could get through it. I so understand what you are saying about being in a constant state of pain. Everywhere I go in our house I see projects he was working on, and that we were working on together and it tears my apart. Torture is the right word for it!
Just got a call from Hospice and he qualifies. I am so grateful. She said something has tipped the scale for him and after the exam on Friday it was sort of a no brainer. He is still eating but has to be fed, barely walking, and totally incoherent. She said he was not the typical Hospice patient but given the whole picture of his case, she felt he would be accepted. He was moved to LTC a month ago and the decline has been very rapid. He was in ALF for 16 months before the move a month ago.
I'm glad, CO2. Hospice will be helpful. I heard upsetting news today from Hospice. They confirmed for me that his being unable to swallow is the beginning of the end. He can still swallow somewhat, so we're not totally there, but the fact remains that he will die much sooner than I expected. I don't know, maybe I would have thought it was too fast no matter when it happened, but he was walking and eating and talking when he entered the residence 6 months ago. So I keep going back to the same relentless questions. Would he be better if I hadn't placed him? If I had gotten help in the house? Is he declining because I moved him there, because I don't visit enough, because he's given up hope?
I don't think I'm strong enough to go through this. I'm not grown up enough. I can't do it.
I did not place my husband. In fact, two weeks before he died I was still taking him out every day. He was having severe difficulty swallowing for weeks. I would have to sit with him and spoon feed him small portions of pureed food. All of a sudden, he shut down and wouldn't eat.
Please don't second guess yourself on placing him. You did what you felt needed to be done. As I said, my husband was not placed and still died way before I had anticipated.
Would the disease have spread less quickly if he'd been at home? No. Did the disease spread differently because he did go into professional care? No. Instead you're not alone and the people at hospice are helping both of you with what is happening.
You ARE strong enough to go through this. Try to stop chewing your fingers off with worry right now. Turn on the TV and don't watch the news. Watch the shopping channel or something boring or go to bed and make a warm milk or tea or have a stiff drink before you go to bed. Throw on an extra blanket and don't worry about being too warm because it will help you fall asleep. Put on boring music with no talking. Whatever is safe right now. You can do this.
Joni I know we are all different. But I just need to give you something. I too, am not really grown up. The day that Dado died, though they told me in the emergency room his kidneys were shutting down, one of the emergency physicians said they would get his kidneys going, but then he would have to be on Dialysis. And the truth is they did not really know what was wrong, I don't know if this doctor knew Dado had advanced Lewy Body dementia. Could be because he was only 65, and looked healthy and young, (just looked) SO I held on to that, and waited by his bedside for more word.
Also, just the day before he was in the nursing home, and seemed fine. I had NO IDEA it was his time to go, even though he could not walk, talk, feed himself, or just about anything.
So when the main doctor that knew all the scoops took me to a room, and told me," you know Patricia, you know, that you have to let him go, and we will make it painless. And he has less than a day to live."
I lost it lost it lost it and said no no no what happened why why why, knowing, it was so. I will never forget that moment, I wanted to tell the doctor NO LET HIM LIVE PLEASE!!
I know Joni I really do. Please realize, this is the VERY HARDEST time, you will make it. And if you are like me, the first two months are almost unbearable. But I am here, almost 8 months later, and I am doing very well. Of course I miss him, but I survived, and survived well. Huge aloha and all that good stuff sent your way. Patty
CO2, I think you will be pleased with the care your DH receives from hospice. My DH spent the first 17 months in and ALF, a month combined in hospital and inpatient hospice facility and for the past 2 and a half years in the current SNF. He was discharged from hospice after the first six months in the SNF. He received excellent care during that six months. He continues to walk in his merrywalker and eats everything anyone will feed him. The only med he is on is one Zoloft at 9:00pm. I hope you will sense a deep peace of mind with your DH's hospice care. We march on in this journey. Take care.
Moon, Wolf, Coco - your words and your experience have helped me tonight in this very, very dark place. There is nothing better than hearing from people who understand - everyone else has tried to make light of it, or they've just told me how strong I am and I can continue on and be stronger. When I'm in my right mind, I understand that he would have become this sick even if I kept him at home, but I'm not spending a lot of time in my right mind. I asked the Hospice nurse if I would have felt it was too soon no matter what happened, and she assured me that's true. I don't know. I can't agree to a feeding tube at any point, I know that, just as I know that everything in me is going to want to do that. I like the warm blanket idea. Thank you everyone, so much.
Joni1957 and AliM, Joni I too have gone to that dark place. It is like I have no control of my thoughts and thus as you say we are not in our right mind. It is only human nature to want them with us a little while longer. AliM, they tried a merry walker and he could not manage it. Hospice told me a walker will not work for him because he will not remember what to do with it . I have heard that some patients stabilize with hospice and then are taken off. Although I do not want to see him go, I sort of hope that does not happen. But again I have no control over these things. One of the other gentlemen on his ALF unit was eating, feeding himself and walking with a walker and certainly did not look like he was dying. One day he woke up and could not walk and they moved him to LTC and he died. That is amazing AliM that your husband only takes one medication. I think everyone in this site is much stronger than they give themselves credit for and we have all developed amazing courage.
CO2, The merrywalker was my idea. It gives him a place to sit instead of walking himself to an exhausted state and falling down. He has turned it over twice and hit his head with ER visits as the result. He was on resperidal an Ativan in the past. Both made him worse. Being on one Zoloft only probably sounds like I should have kept him at home. My placement decision was made 4 years ago and I knew that I had to . He is now only aggressive when it's shower time. Whether I visit him or not I also feel as if I am in the dark place surrounded by a circular concrete wall. I just want to have a life again because being a care manager is no fun.
Joni, Hang in there and we will make it through this. What doesn't kill us will make us stronger. With Wolfs encouragement we will survive. Thanks Wolf.
I went today to see my husband. He looked so frail . He has lost a lot of weight because they cannot get him to eat anything. It was the weirdest thing today because he seemed almost like his old self. He was very sweet and wanted me to sit in his lap. I just don't understand this disease. He still talks to me, like today, as if we were sitting in our living room having a conversation. But he doesn't know where he is and he randomly bounces back to a former time when he was a high school principal. It constantly keeps me off balance and when I walked out the door I told him I was going shopping and would be back later. He said "I'll be here" like he used to say when I would go out to get groceries. I fell apart in a hopeless crying puddle as I drove home. Such a helpless feeling to leave the person I love most in the world . I don't get how he can seem almost normal one minute and then be gone again. I HATE this! And there is no relief! I am so glad to be able to vent this endless frustration that I feel. I don't know how any of us ever have a life with this horrendous experience..you guys are stronger than me.
You are stronger than you think, dellmc53! We have all felt as you, and yet, we all pull through. Just grab hold of the rope that is dangling- just tied another knot in it for you to hang onto. That rope has pulled so many of us up to keep going another minute, another hour or another day. You will make it.
My husband also was placed 61/2 months ago a and it nearly destroyed me . He was walking, talking somewhat, Eating on his own, and still continent.
Now, he cannot walk, talk, is incontinent, is being fed puréed food and has pressure sore. He has lost 35 Lbs from 169. He is on hospice and that was the best decision I made.
But, still when they called to tell me he lost four more pounds yesterday, I went to that dark place. I alternate between worrying he will go on like this for a long, indefinite time and thinking he is going to die at anytime.
I have had the same thoughts...how could this happen so fast...would he be better if I kept him at home? Did he give up because he felt abandoned? Did I let him down? Did he realize what was/ is really happening?What dreaded thing will happen next?
What I try so hard to do is realize I have no control over this disease and never did. I tell myself that I have done the best I could do for him.
Right now, I have pneumonia and cannot even visit him. I have been seeing him almost everyday. So what am I afraid of now? Afraid something will happen to him and I will never get to see him again..
The pain, we suffer emotionally is horrific. Sometimes, I am tired of this cloud over me. I want to enjoy life again. But, don't know how without him.
Lorrie, my husband was placed 16 months ago and did well in the ALF--the end of January they told me I had to move him to LTC. he has been there exactly a month. When he moved he was walking, eating, and still continent. In one month he can no longer feed himself, is incontinent, barely walking and can see nothing. He was approved for Hospice but waiting for the doctor to sign off on the order. I too was shocked at how rapid his decline has been. You are so right about the emotional suffering. I cannot visit every day. It would kill me. When I go I feed him his lunch and then put him down for a nap. We have so little control over anything. I think that is what is so difficult. I have no control over the doctor signing the hospice order, no control over the disease. I too am so very tired of this black cloud over me. Still I am happy I placed him even though I sometimes think I should bring him home to die. But my brain is not thinking clearly when these thoughts come around. For some people who had a marriage where they did everything together I think it is maybe more difficult. In our case, we each sort of had a life and did not do a lot together so maybe it is a little easier. I do not know but I know I will miss him. I pray the end comes sooner rather than later. feeling some days like I am hanging on by a thread.
It helps to know that a rapid decline can just happen. What we do cannot change the course of this disease.
I was suffering from guilt over placing him and then this rapid decline. But, now I realize he was home as long as I could possibly take care of him safely. He takes a team to take care of him now. It is comforting to know he is receiving excellent care.
I hope you are approved for Hospice now. I have an aide sent 3 hours each day, a visiting nurse, social worker and hotline to call at anytime. Oh, and all supplies and medications too. We are private pay so it is very helpful to have Medicare pay for Hospice.
I also pray for an end to this suffering. But, then when I really think what that means, I am terrified.
The nurse today called me and told me that my husband had asked for a telephone and wanted her to call me. She said "I think he is missing you." I went yesterday and he was fairly lucid. She said she thought he was having more lucid moments because he was getting more oxygen to his brain (they have put him on oxygen). This actually makes me sadder than when he wasn't lucid. At least I knew then that he wasn't lonely and missing me. Now I feel guilty that I am not there every day. I have been going four times a week because that is really all I can manage. I am not sure if I am angry at the nurse or not. I think she was trying to encourage me by telling me he was more lucid lately but somehow it had the opposite effect. I just fell apart again. This disease is so strange to me. Lorrie...I keep telling myself the same thing you are saying.I kept him home as long as I could. I think we just have to keep telling ourselves that they are safe and it does take a team for that to be achieved. These wrenching emotions are what get me. A beautiful sunny day today and all I can do is weep.
Just got the call that husband has been officially accepted into hospice. I am so relieved. The issue was his disgnosis is different than the typical Alz. I guess she used his COPD with ischemia and peripheral vascular disease. He currently has pneumonia and still walking. She said his case was unusual in that it did not fit the usual criteria. Signing the paperwork tomorrow. I feel as if a huge weight has been lifted. Since moving to LTC 1 month ago he has lost 8 pounds, cannot feed himself or dress himself. All this he was doing at the ALF and was maintaining his weight. The decline has been very fast.
CO2, I'm so glad you have gotten over this hurdle. Your husband's abrupt decline must be frightening for you. This will be such a hard time for you both and you will need all the professional help you can get.
C02, Being accepted into hospice should bring you a little peace of mind. When DH was in hospice I always knew that he was receiving excellent care. Just wondering if your husband is refusing to eat and if staff is being patient with him when feeding him? Does he eat heartily when you feed him? Like your husband, mine also retains walking and eating when fed as the only skills he has left. I sometimes feel like the "walking" patients are perceived by staff as the least desirable to take care of. Once you sign the papers you will be able to hear the truth, with compassion, when dealing with hospice. Tomorrow, after you sign the papers and the weight is lifted, I hope you can do a little something that is special just for you. You deserve it.
AliM, I cannot say he eats heartedly. It takes forever to feed him. Ar least he is swallowing. The lady at his table has to be reminded with each bite to swallow. Yesterday he coughed while he ate. The hospice nurse told me that aspiration can be silent and when a person coughs during a meal it could be aspiration. I thought that was interesting as I never knew it was silent. The biggest blessing about this as I doubt I will have to move him again as they will be able to perhaps catheterize him to solve the urinating problem. I purchased some restrictive clothing but was told that I could not use it because it was considered restrictive. Most nursing homes do not like to do catheters because of the risk of infection so we will see. The other day he urinated on the nurses desk. Walkers do not work for him because he cannot remember what to do with it. Thank you for your kind words.
if its any consolation to those who have placed, I kept my DH home to the end. he suffered years from cronic UTI and was treated over and over and would eventually recoup to mostly where he was prior. the end came very quickly. we had treated for uti and he had his round of antibiotics, but he never could pull out of the infection. they had said eventually the anitbiotics would lose their effect. after treating him he passed 10days later. so yes the answer is they can most assertively go quickly and downhill in any scenario and place. with this disease you never know when the end is coming, and if anything we have learned no two victims are ever alike. only our pain during the survival is the commonality.
Co2 My husband also declined since entering his alf in January. I posted before about it. Hospice is such a comfort
Wednesday, he would not eat or drink, kept his eyes closed and had 101.6 temperature at night. I sat by his bedside listening to his every breath and frequent coughing. I thought this was the end. Then Thursday when he finally opened his eyes, he drank ensure and ate soup. He ate some dinner ( only liquid and purée now).
Hospice nurse and dr came. They felt he even looks different in his face. So blank and almost a paralyzed look.
Monday, ALF dr. Gave me time frame of three or four months. After Wednesday night, hospice nurse thought more like one or two months. All this is hard to process and believe. Could the end really be soon? I try to imagine never seeing or touching him again and it is beyond belief.
We, my stepdaughters and I , are going to preplan at funeral home. Those who have read my thread about my stepchildren and plans know the difficulties I have had with them over his final wishes(in writing) to be buried with me and not their mother who has been deceased for 18 years.
I am still getting over pneumonia and since his days are numbered I must see him everyday.
My head is filled with so many thoughts ...planning what we can and worrying what will happen.
Thinking of you during these awful days and nights, Lorrie. You have done everything right and I hope Mr. Guilt does not invade your thoughts. I hope and pray you recover from your illness totally - and very soon.
Lorrie, know that we are thinking of you. I have the funeral arrangements made. It is good you are getting that done for it will make it much easier later. I pray this does not go on much longer for either of us. I am so weary as I know you are also. I am trusting that when the end comes it will be come kind of consolidation to you even though you will miss him.