Today H fell and could not get up. After hours of him saying he could and would get up it did not happen so I called the paramedics.
They put him on his bed. They asked if he was on hospice. I am guessing because this is because of his cognitive status. They really saw him in a different way than I do.
Okay, so he is back on the bed and an hour or so later he has fallen again. Saying all kinds of crazy things about seeing the light and walking the right way. He has had delusions before but never hallucinations. He said over and over again that now he wanted to go to the hospital. So, I called the paramedics again- and it was the same crew.
They said they wanted to transport him the first time (this was kind of lost on me), and then asked him if he was willing to be transported. He said yes, then no, and so I was asked for documentation and produced poa- healthcare and health care proxy. They then said that based on his cognitive status they would transport him anyway.
And so there he went. Not to the hospital I wanted which is near care manager but to one in the same group that has psych evaluation services.
He can't come back here. I cannot deal with this anymore. I can't take care of him physically and cannot cope with his latest behaviors which are not sleeping and waking me up every hour with crazy talk. The state requires that an aide have their own bedroom and bathroom and that is not possible here.
I want to buy two more animal carriers tomorrow and if he comes through the front door I want to leave through the garage and deal with the legal ramifications later.
Oh Abby, I am so very sorry. If you are unable to take care of him, just be honest about that to the hospital social services. I could be wrong, but I believe they can not release "the impaired" if there is no one able to assume care/responsibility for them.
I remember what it felt like to feel broken… my heart aches for the pain I know you are suffering. I wish there was something I could do to help ease your load, to let you know it will be “ok” ….. I will do the only thing I can, pray for you and hope your situation improves. Hugs and more hugs ♥
Abby Nikki knows. please listen to her. You know your limits and you have likely been over the limit for longer than you know.
I lift you up in prayer, you and your husband, for an outcome that is going to help both of you. I am so sorry for your pain. May God help heal your brokeness, and give your husband the relief he is calling for.
Abby, We all get or will get to the point when we just know we can't take care of our LO anymore. It sounds like you have certainly reached that point and you now need to do what is best for you. I placed my DH Monday morning and I am waiting until next week to go see him. I am never sure what he remembers and I don't think I could stand it if he asked to come home. I realized last night that I haven't had a head ache since placing DH! I wish you well and pray for peace and comfort for both of you. God Bless.
Prayers for you. My hb fell a couple times. Last time knocked himself out, paramedics took him to hospital where he stayed for a few days for "tests." That allowed him to be dismissed to the special unit of the local care center under medicare. He never left there. Our gp was excellent and knowledgeable about the "system." He's also medical director of the care center. Had suggested earlier that I might consider placing hb. The falling did it because I couldn't get him up.
You must keep yourself healthy. You can then visit him and be relaxed.
I think this is what happens. So now you do have to do as Nikki says and speak with the hospital social worker. Sometimes, when those of us who haven't QUITE hit the wall (in the manner that you have very bravely shared with us) place our spouses, we feel all sort of uncertain or second-guessy about it...even though we're pretty sure we were on the verge of crashing and burning too. It's been a fun year, eh?
I got to this day too. It's not their fault. It's not our fault. This is one of the worst things that happens in life. And even though everybody is looking at us in awe or fear NOBODY wants to be in our shoes; the truth is nobody is going to help you but you.
It's a lovely sweet picture that we tend to the sick, that we stand by our spouse, that we fulfill our vows - but hidden under that velvet glove is the iron fist of another side of that same truth - which is that you, your life, your hopes, and your feelings are being thrown under the bus. That lovely sweet picture? You're not in it. Hey, too bad.
I'll tell you another stark truth. Nobody wants to hear that you are struggling outside of this board where every single person is in your shoes anyways. No normal person comes here to read.
It is the hallmark that if we think about ourselves it seems selfish. Look up Stockholm syndrome or hostage syndrome because that's you. You as in all caregivers because all alzheimer's spouses are hostages of reality caught in a situation so seriously bad that only a fool would deny it. Lives are being destroyed by this disease without hope and with enough suffering for any 20 normal people.
Scan the list of things people want to do. Go to the bottom of that list to find you.
No one wants to think of themselves being on the Titanic after it struck the iceberg; but, that is an apt comparison because every one of our spouses is doomed by what has happened and this ship is going to sink, slip under the waters, and be no more.
It's right in that metaphor that the practical realities of anyone's life come into sharp relief. No one can undo the fact that the ship has hit an iceberg and is sinking. We're all sorry about it. There is however a life still to be saved and it is as valuable and as real as anyone else's life.
We often come to crisis points and we often hit that wall that we've had it. It's the nature of this beast. Somewhere you will hit a wall and it was at that wall where you really should have stopped because the damage to you versus the help to them is beyond any reasonably balanced assessement. It's important at that time to remember that when we say that every life is equally valuable - we don't mean yours.
Remember that every thought you have of helping yourself will feel like betrayal. Every action you take to help yourself will feel wrong. You are a caregiver. Not a caretaker. A caretaker would take care of all things because all the things need care. But this disease does not operate that way because rightfully much is demanded from us and I think it's right and good to give it. There comes a point though. And we are unlikely to know where that is until we pass it.
I have no words to properly describe the pain I feel for my wife and for us. I am not going down on this ship and I don't buy that doing so is in any way noble. It's a sickness of thought created by the first person nature of reality that because we don't see ourselves except in a mirror it's difficult to treat ourselves and think of ourselves in the same way as others.
I'll tell you what I know and believe. The titanic went down because boys play with toys and that ship was going to set a speed record crossing the atlantic despite the icebergs and completely still moonless night. If anyone wants to throw their life away for that go ahead. And I believe that Alzheimer's coming into your life is so devasting that if you don't fight for it, you might not even hear the giant sucking sound of Alzheimer's trying to take your life too.
God bless us everyone. That includes you. The metaphor I have stretched is that somewhere your thoughts and concerns have to shift to you. What you can and can't do. How you will continue. And if we do not come to that grim truth, it will come to us.
Abby: We all have limits and you appear to have gone above well beyond. It's now a question of your survival as well as DH's You've done all that you can, the horror's of this disease have overwhelmed you physically and mentally. Don't feel that you have failed in anyway, we're all just human Years ago my DW & I cared for her 98lb mother in similar circumstances. We had round the clock help and even with all that support network in place we surrendered too. and we placed her in a nursing home. The professionals in the facility he was taken to will recognize that home care is no longer viable option, you let the professionals do their thing.
Abby you remain very much in my thoughts today. You are precious...remember that as you try to muster up the strength to face today and the tough choices you are now faced with. ((Hugs))
You have gotten to the point where you have to recognize your limitations. Now it is time for you to delegate your dh's care. God doesn't expect us to do more than humanly possible. It is actually out of your hands now. You are in my prayers. Love you.
Wolf, eloquent, as always. You made a point that I really never thought about, but it's SO true! “ You are a caregiver. Not a caretaker. A caretaker would take care of all things because all the things need care. But this disease does not operate that way because rightfully much is demanded from us and I think it's right and good to give it.” I never thought about the difference between a caregiver & caretaker, but what you pointed out makes sense. You are so wise!
Abby, it is heartbreaking to read what you've been going through. The bottom line is, you must save yourself--no use in going down with the ship. But I'm so sorry to hear how it is playing out--stick to your resolve, you will find a solution for your husband's care.
oh abby i feel for you! My dh fell last Thurs (after some friends gave him some hootch) and I asked him if he had broken anything he said he didn't know ... but no, he was ok. He said he could get up by himself so I left him and shut my door. (I was a little angry) I kept hearing him scooting around and he got into his room and to make a long story short.... after I offered to help him and told him to grab my forearms (my hands are arthritic) he could not get up. Finally after three hours he got into his bed which he promptly wet so got up again...it was 12 midnite by now. I changed his bed and made him wear depends which of course leaked but at least it lasted till morning. The next a.m. I said he was not going out with those friends again...he asked why... It took you three hours to get off the floor and he denied it. (I am crazy and mean I am sure he thinks) Also I am 5'2" and 120 and he is 6' and 200. I live in fear of him falling and breaking something. If he is immobile he is not home. Sometimes I wonder what I would do without him. I mean really .... I can no longer think that way. Time would stretch on with so many things to fill it. I am so used to crisis mode could I have a me again. Do you Wolf? or any of you who have time...
Grendelsma, it takes a while to get over, but I believe that you will enjoy life again and have yourself back. Not the same self, but a self that can still function, laugh, love and grow.
Thank you, each of you, so much. Because of you I feel understood, supported, and not alone.
Husband remains hospitalized. He is in a step-down unit, not psych. They are using a term and it is not coming to me now, but something like cognitive malfunction. There has really been no change in the near 48 hours since he has been there. He knows his name. He knows his name and that is it. He maintains that it is February in the year of his birth and actually he would not have yet been born. He does not know that he is in a hospital, where he lives (city) and if he has family members.
I don't know what will happen next; only that additional tests are ordered.
The hospital is seeking my consent for anything invasive other than blood draws. I pretty readily gave consent for MRI with contrast, since H has had this many times with basically no complaint other than a slight flushing feeling. This time they wanted to include the spine; they explained this would help show how far down from the brain stem the atrophy has progressed.
You know, just a couple of weeks ago I (well, I should say H) received a perky postcard from the outpatient imaging center "it is time for your annual mri/pet!" I put it aside asking myself why should he be subjected to that, what is the point, as it can only go in one direction anyway.
But, in this situation I consented right away. I had a much more difficult time with consenting to the lumbar puncture, which he has not had in quite some time and just the image of it makes me cringe. But I did. He is sleeping a lot, as he has been for some time, and they said they would wait to do it while he was asleep and with, they expected, only a local.
I slept! I woke up wednesday to the phone flashing. I had slept through the night for the first time in at least two years! My first thought was how quiet it was. No yelling, no banging around, no slamming doors. My second thought was, that this would be difficult, always watching for the phone to flash. This is because H hates the sound of a ringing phone, no matter how soft or custom the tone. Then it caught me- "I CAN turn on a ringtone". Later I had to get something out of my car in the garage. I have been sleeping with my handbag under my bed, my car keys in a compartment in it and my mobile under my pillow. The car, garage, strategic doors- I check and recheck that they are locked and secure. It caught me again: " I can hang my keys on the little hook thing in the pantry".
Abby, this house has Plantation shutters and I had to keep the ones in the living room closed because of DH and his paranoia. If he saw the woman across the street or even her car he would be off. Since he has been placed I open the shutters every day. I haven't had to take any Advil either, plus the knot that was in my stomach is gone.
Abby--your mention of not sleeping a full night in two years reminded me of a guy I saw on TV this a.m., who was describing how prisoners are tortured--and sleep depravation is a biggie.
Based on my experience, you will keep having little "aha moments" of adjustment. Steve hasn't lived here since last summer, and I'm still retraining myself to think like a normal person (vs a dementia caregiver). I still haven't resumed watching as much TV as "before" because for 6 years we only watched the shows Steve could tolerate (I WILL NEVER WATCH ANOTHER EPISODE OF NCIS FOR THE REST OF MY LIFE). I have yet to succeed in retraining myself to actually sit down when I put on makeup vs slapping it on while standing. I'm sure I could give dozens of examples, though, where I have adjusted, but it's a slow process.
Jean--I hear you about the Advil. Since I placed Steve, my reflux went away, cholesterol, tryglicerides and BP are back to normal, and I've lost weight.
Watching espisodes of NCIS sounds so much better then at my house. My dh has me put Cops on and it goes for hours...I record them and he watches the same ones sometimes two or three times.
I hadn't thought about it until you mentioned it. I can't sit still long enough to watch TV. I am still multi tasking. I still can't sit at a table and just eating a meal. Usually eat while on my computer. Will we ever be "normal" again?
In just the last three days I have had a bit of normal.
I congratulate and admire any here who refer to this as acceptance. You are stronger than I am. For me, it has only been resignation.
Husband remains in the hospital and his approval for skilled rehab is pending. I have been informally told that nothing will happen over the weekend and this is especially since he remains disoriented (x3)? was my last message.
My nightmare is that a taxi will pull up, a gurney will roll out and someone will say: "well, here he is".
I have experienced that the best ALF's are not available on overnight notice. The one I like the most has one vacancy pending, and they are trying to determine where I am located on the waiting list. I am going to another in the same organization hopefully Monday. They too, have a pending vacancy.
Tonight my hopes and prayers are that he is approved for the rehab. That will give me at least 21 days and at the most 90 days to find placement. I want him to go to one of these places, next week or next month or whenever, to enjoy fine dining and rose gardens and all the **** that I cannot provide.
VERY expensive respite! Nevertheless, it has been respite and I am like moth to flame.
abby--I just posted on another thread about a last minute switcheroo I had to do when placing Steve. He was in the geripsych unit, I had compared a dozen ALF's, chosen what I thought was the best, about 4 weeks prior to his discharge. OK, finally he was to be released on a Monday. On Friday afternoon, I received a voice mail message from the selected ALF that they did not know if they could handle him, plus, they were having a renovation beginning Monday involving moving all the residents' around, painters, noise, etc. You can imagine how I felt. After speaking with the psychiatrist, it became clear to me that there was something in the discharge summary from Hopkins that had scared them. I got Hopkins to extend his stay by one day (Medicare would not pay for longer) and in 1/2 day contacted my second choice, Arden Courts. They had an opening, the discharge summary contents didn't scare them, and in a few hours, I had picked up Steve and taken him there. It was truly a silver lining--it has been a great fit and is much closer to me than Keswick (the other ALF). So this nightmare proved to be a win/win, although it was horrible at the time.
I know you were kidding, but no taxi can pull up and unload your husband. I was lucky that Arden Courts is located in a neighborhood with an overabundance of ALF's, so they always have openings, especially in this economic climate. My advice is to line up a first and second choice, in case you have something like my experience happen. I could have brought him home for a short period, but preferred not to because frankly, it was easier on me emotionally to do the transfer directly from the hospital.
Abby, I lived your nightmare last fall. DH had been in the hospital twice in October, the second time for Coumadin toxicity. Because he was so weak, they moved him next door to the rehab where he stayed Oct. 31-Nov. 18.He was there for "intensive physical therapy," as they were trying to get him back to the limited mobility he had pre-hospitalization. Essentially he was bedridden the whole time he was there. Around 5 p.m. Nov. 17 I got a call from one of the administrators who pretty much said, "Come get him, the insurance is not going to cover him anymore. There is nothing we can do."
I asked that they keep him one more night, so I could make arrangements. They sent him home by a transport company the next day. He spent the next month bedridden ... but having PT three times a week. Prayers and PT worked -- and on Dec. 18 he began to get up again, transferring from bed to wheelchair, wheelchair to shower, etc. Since then he has had a few weak days [like last night - ugh] but had been pretty good generally.
During the time he was hospitalized and in rehab, I called a lot of facilities in the area to ask about respite care. They all said they could not handle him with all his many issues. :( It's not the dementia that was the problem, it was his lack of mobility. I guess he'd be a better candidate for a nursing home.
I saw this quote on FB today and thought it appropriate as sometimes well meaning people cause hurt- Rabbi Wolpe
I saw a parent take a child's hand as they crossed the street. There were no cars and the child could walk as easily across the street as on the sidewalk. The point wasn't direction but the warmth of presence. Don't rush to advise your troubled friend; just take her or his hand.
And, from a priest and author of books on spirituality:
"When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.”
My niece sent me a book entitled The Cherokee Feast of Days. There was a saying in it that I loosely paraphrase. It was talking about reaching back to help another person travel the road on which you have walked before. I love that. I think that is what everyone on here does. Reach back to help all of the others who are coming behind.
Bluedaze* I frequently stand to eat meals. I haven't put a placemat on the table since Gord passed away. I am still eating whatever comes to mind. Maybe that is why I have my 3rd cold since Gord died.