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One day husband is up, the next day he's down. After lots of talking by me and the physical therapist, he says, "I guess the only ticket to me getting out of here is doing the physical therapy." YES! We chat about that and it seems his thinking is clear about that. He will say "I can do that." Even when I mention that it will likely take at least two weeks, he says "I can do that." I feel such relief that he finally understands.


Then the next day he calls to say he can't stand it another minute and he needs to get out of that place right now.


This dang COVID thing complicates everything. He hasn't been able to even leave his room since he got there because new patients are quarantined for a bit. He hurts. He's bored. He's lonely. My heart aches for him. And I can do NOTHING to help.


When I visited yesterday morning, he looked and sounded so good and we talked about life in general. He asked about family and friends and our dogs. He misses our dogs so much. One in particular who is always on his lap. He was clear and I even got him to laugh a time or two. We talked about physical therapy again and how important it was that he participate. It was good.


Then last night he called me late. He has been sleeping and when we woke, he was having a hard time figuring out where he was, where I was, just what was going on. He was really freaked out. Oddly enough we had one of the longest, most coherent conversations to date. I'll bet wetalked for over 30 minutes. It was so nice, and was a comfort for both of us. And THEN he tells me that he doesn't know how he managed to get from the bed to the wheelchair on his own, but he did it. WHAT??? My heart is in my throat as I beg him to PLEASE not do that on his own! "Isn't that why I'm doing physical therapy?" he says. Angry because I'm asking him to ask for help, then calming down as I suggest he look for the call button to get an aide to help him back into bed.


The ups and downs are exhausting. My own mood of being worried about him, being angry when he does something like trying to transfer on his own, feeling resentful when HE gets angry and says I'm "lecturing" when I try to explain why he shouldn't, being so, so sad about the entire situation. And the guilt about any of my feelings when I know that he must be feeling all of that and more. I feel so weary. And scared every day.


I try to keep busy...goodness knows there are many things to do around the house and yard. Yet I have little motivation to do anything but worry.


I'm sure y'all know the feelings. It really helps to know that others know how I feel. Thanks for listening.

Here is the best advice I can give you. I've told this to my patients for so many years... yet when it came time to apply it, it never even occurred to me! The bottom line is, if you don't take care of yourself first, you can't do the best job possible of taking care of anyone else (no matter how much you love and care about them). Some of these ideas may sound silly depending upon your age, so take my suggestions with a grain of salt. Find a computer game like Mahjong, scrabble, card games,... and play them for 30 minutes before going to sleep. Yep, I know the computer is supposed to be stimulating and possibly delaying sleep onset. In this case, it will give the your brain such a relief not to be worrying about anything except beating another player or the computer, that you'll likely sleep better. You can also keep a notepad by the side of your bed and right down all the things you've been worried about, this way as your head hits the pillow, you won't have to keep playing it through your head and you can think of more pleasant things. Go to You Tube and type in Beginner Meditation or Beginner Guided Imagery and spend 15 minutes a couple times a week using these techniques to free your brain of the things it usually thinks and worries about all day long. Take a nice long warm bath once a week (I don't drink so I can't advise you about that glass of wine they always show in the pictures in magazines.). Play upbeat music during the day. Once again, you can find songs from just about any time period on You Tube. Sing them as loud and cheerfully as you can (I close my windows, but you may not need to...). Trying reading a good book before falling asleep (NOT one about dementia or solving any types of problems). Eat as healthy as you can. Get a little (or a lot) exercise EVERY day - it releases endorphins and gives you an "exercise high." Better yet, walk for 10 minutes out in the sun every day (wear sunscreen between 10 a.m. - 2 p.m.).

Now back to dad. Have the recreation/activities person visit with him every couple days. See if they have puzzles or word jumbles,... or other activities to help the time pass by if he has to stay in his room. Have the facility social worker meet with him at least weekly. Have a psych evaluation done. The effects of the Corona virus in addition to being in a strange facility away from home have a lot of negative effects on how people think and feel. Your dad might benefit from some short time medication for either anxiety or depression - as the mental health professional deems appropriate. No, once you start them you don't have to stay on them for life. It could be tremendously helpful to him during his stay.
When speaking with dad on the phone be positive and upbeat. Praise him for any and all upbeat statements he makes and redirect him from negative, sad, or angry conversations.

Best of luck to you! Hopefully this will be a time-limited situation.
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Reply to AginginPLaceLLC
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I know the ups and downs of having someone in the hospital but now I know that I should have been getting things ready for them to come home. They are being taken care of so try not to worry. Instead get ready.
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Reply to Minnie001
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If at all possible, if he is doing his P.T.--even if only during rehab sessions--try to keep him there and don't try to bring him home sooner than is recommended, as some others have suggested. I've had in-patient rehab followed by home PT/OT (at the recommended time) after 2 major surgeries. Getting home PT and/or OT at home is usually 2 times/week for around 1 hr or even less. PT/OT in rehab is usually twice/day for over an hour each time, and some places includes Saturdays. In addition, in inpatient rehab, things are set up more comfortably and efficiently for having therapy. For example, for some leg exercises, you usually need to lie on your back. It's much easier on a firm pad that's supposed to be used for PT than to do it on your bed, which may be softer than desirable, too wide, etc. In addition, in rehab, you're pretty much forced to do many things by yourself. For example, assuming you're eating in your room, after your tray has been delivered, you may find that upon first try you can't get your milk open. If you want your milk anytime soon, you're going to have to figure out what to do yourself. If you were there, he'd have you to open it. Better that he can do as much as possible before he comes home, and on the up side of things--even though he may be unhappy in rehab.
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Reply to caroli1
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I will pray for some measure of comfort for your spouse and you.
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Reply to Llamalover47
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This sounds like he needs some medication to try to stabilize him - good luck.
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Reply to Lockett2166
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If the reason for rehab is the hip and he had surgery, often the anesthesia can bring on dementia-like symptoms, esp in the elderly. As others noted, it sounds a bit like sun-downing. This most often occurs later in the day, late afternoon, early evening, but it can happen at any time of the day. IF it generally occurs around the same time, I would consider it. A mild anti-anxiety might help with this.

I personally don't like medications - there are necessities, but if there are options, I prefer to not medicate. HOWEVER, when mom had her first UTI in MC, there was no real option! By the time we could get medical intervention, she was put on anti-anxiety, lowest dose, for the duration of the UTI treatment. She was given her dose mid-late afternoon and it was just enough to take the "edge" off, keep her calm, and she would retire at a normal time. She slept through the night.

Hopefully he can proceed with the PT needed and regain some strength so he can go home. Alternatively, is it possible to have him get in-home PT? I've read many posts which talk about rehab and how the patient works with therapist, but doesn't keep up between sessions. This is important! It helps speed up progression and rebuild strength. If you can arrange in-home PT, be sure to work with them and have any necessary equipment (special bed, walker/wheelchair, etc) to help you and work with him when he has sessions, so that you can successfully encourage more repetition of exercises throughout the day. Also consider asking about the anti-anxiety - even if he is home again, he could still have the after-effects from that surgery for a while.
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Reply to disgustedtoo
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When my dad was in rehab he often lost track of time, he’d call at odd hours, couldn’t remember which meal he had or which one was to come, didn’t realize if it was day or night. He was always mentally clear and this had never happened before. After days of being puzzled over it, we found that his bed was positioned with his head facing away from the window, the workers didn’t write the day on the whiteboard like they did in the hospital, he was napping far more than normal and that became disorienting, and with Covid precautions there was little interaction with people outside of therapy time. It was the perfect storm for confusion and depression. There isn’t much you can do in this, other than asking staff for help in orienting to time and place.
In our case we had some honest talks with therapy staff about progress and potential for progress. Truth was, dad had no more “trying” left in him. He’d try one day and then refuse the next. It just wasn’t there anymore no matter what was tried. Consider talking to therapy staff about this, not saying it’s the same for your husband, but you may get some good info.
Lastly, cut yourself some slack and realize that “happy” is likely over for your husband. He’s dealing with a lot of issues and being happy may be too high a bar anymore. You’re doing your best already, that’s all any of us have to offer
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Reply to Daughterof1930
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Can he get physical therapy at home? Some things you can be trained to help him with.
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Reply to LCPELC
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Hello my friend I don’t think I have a perfect answer for you I sure wish I did I cared for my grandmother who had cancer when I was a teenager, then in 2015 I cared for my father for over 10 years with his Alzheimer’s till he passed. Now I’m taking care of my mother who’s an alcoholic 85-year-old living with me. So not to bore you with details of all of that. I just want you to know, you’re not alone. This is no easy task that we have as caregivers. It is often given to those of us with a warrior spirit, the gentleness of an angel, and the strength of an oak tree. It takes a lot of patience, please remember to make time for yourself. I believe that alone is one of the hardest to do, many of us put others first. The glass can’t be half full. Please try to find some support whether it’s a family member a friend or a neighbor maybe a church or even bowling community that you can talk to or have lunch with. You’d be surprised how many people are in our situation currently or have been there at some point. You need to allow yourself time to just breathe and reset, to rest your mind and relax your muscles, have some peace and quiet while going for a walk seeing the birds the flowers and keep your spirit and soul healthy. Remember to drink water it’s important for your body and your mind as well. I’m glad you have the puppy dogs they are great therapy for all of us. I don’t know if anything I’ve said here helps but I’m sending you a big hug and prayers of kindness love and light. 🙏💜🦋🌿
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Reply to Ginny3
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Deborah22 Aug 18, 2020
All that you have said makes me feel like I am not alone... we all need time for ourselves but its so much easier said than done... your reply some how brought tears to my eyes... I guess I just need a good cry to reset and do it all over again...and sometimes honestly i am so tired of being the strong one!! Especially when I have been strong all my life (62 years) and I am still waiting for my brother to grow up...(58 yrs old and feels like the world owes him everything and more)....

Thank you and be well and stay young at heart... hugs to you
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Me too....my first thought is sundowning
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Reply to MACinCT
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JDawn, are you husband's moods dependent upon the time of day? Reading your posts makes me think that perhaps he gets confused and combative late in the day.

This is sometimes characterized as "sundowning". It might be worthwhile to consult with the director of nursing and the doctor at the facility about this.

Frankly, wouldn't try to get him to be cheerful about his situation.

I think saying "yes, honey, I know this is hard for you. I'm sorry that it's happening" might get him to to accept the reality of the situation better.

Maybe try that and see what the results are?

Hang in there! (((((Hugs))))))).
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Reply to BarbBrooklyn
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My rollercoaster might be a bit different than yours, but it's a roller coaster none the less, and one that I am more than ready to get off of (as I've never liked roller coasters).
I've really been on this roller coaster since Jan. 1996, when my husband of a year and a half had a massive stroke at the age of 48. Our lives changed dramatically in an instant. The ups and downs were continuous over the years, and now after developing vascular dementia, my husband is now under Hospice care,(has been for the last 21 months) and on his death bed. Over the last 21 months I was told my husband was dying 4 different times, which of course takes it toll on you, as you try to prepare mentally for what lies ahead. Then he pulls through and the roller coaster continues. Unless you have been there done that, it's hard to describe the mental and sometimes physical toll it takes on you.
So here we are today, and I know my husband won't be here with me much longer. He hasn't eaten in 11 days and only takes a few sips of drink. This roller coaster will be coming to a stop soon, but then I will be getting on another, as I will be trying to figure out what to do with the rest of my life.
So, just know that you are not alone. There are a lot of folks on here that know exactly what you're going through. Make sure that you're taking time for yourself, and don't beat yourself up for being human. Everything you're feeling is only natural under the circumstances, so cut yourself some slack, and just enjoy the time you have with your husband.
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Reply to funkygrandma59
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Nonni2012eli Aug 15, 2020
I have no helpful reply - but so, so many hugs for you.
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