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Husband got sick last week ended up in hospital with pneumonia and sepsis and now he is home to recuperate. His dementia is worse! Doesn't know his birthday, and struggled to make a cup of coffee. I read that pneumonia in older patients causes some memory issues. Do you think it will improve or is this the beginning of the end? It is frightening. He has an ostomy as well. And last night he unhooked the bag in the middle of the night. Her never did that before.

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I am sure my situation is all too familiar. My husband is 82 so I have to face the fact of what this is. I try and make him comfortable and take him out when I can. I called Elder care to see if I can get a compainion to do things with him, as he does still have good days. Can not afford nursing home. I would go broke. So I have to make this work. He was so sick this time, I really didnt think he'd come home. Some people were great and understanding. Others who are "friends" not a call not a card not a meal the whole time he was in hospital. You learn a lot in cifficult times. But I choose not to dwell on that stuff. It is just so overpowering to take care of every detail of our lives. He used to do bills. Now I do that take care of him house and whatever needs to be done. I dont know how long this phase will last but I see that it is draining to me. I dont complain much because really dont want to hear you. Everybody has a turn at life, the best of my life is gone and I have to find a new normal. Hope I see a ray of sunshine at some point. But as for now I grieve...
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joycee1...."they" all say they do not like Day Care but...once they get there and get involved it is different. The will say the next day they don't like it but again...once they get involved it changes. Sort of like a kid going to school, they don't want to get on the bus but once they get to school things are alright.
So if there is an Adult Day Care that he can attend I think that would do you both a world of good.
I missed my Husband for years before he died. But every once in a while something would happen that would make me laugh, in turn he would laugh and I would get a glimpse of what once was. It was bitter-sweet those moments. You sometimes have to look for those times.
Is your husband on Hospice, or have you checked to see if he would be eligible for Hospice? You would get a lot of help from them, 2 or more times a week you would have a CNA that would come in and help bathe him, order supplies, a Nurse would come to check him medically, you would have a Social Worker that can help as well. A variety of therapists from music, art, massage and for you a volunteer that would come in and give you a break once in a while, or as often as once a week.
((Hugs)) and hang in there.
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joycee1 Feb 2019
I have missed him for 3 years. I have all the responsibilities. And then the kids come in town and tell me what to do and leave. I dont know what I feel anymore. Just trying to get by each day. He wont go to daycare because some days he is sharp and would be horrified to be there. He is declining slowly. He watches t v and sleeps most of the day. I take him out for coffee, etc. He has chores, empty the dishwasher and put wash away. I want him to think he an do things. But what happens is so sad. I am alone and he is here. I know you understand it. My days are all a blur...just to keep going. Thanks for your imput.
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thank you all for suggestions. He is doing better, but today he asked about voting. I told him that would be 2020...He wanted to go the the library to check out what I said. You know what really bothers me, it is because I am basically alone. He was 172 lbs. now about 140, skin and bones, I have to cajole him to eat. I give him vitamins and anything to get him to eat. His ostomy he refused to ever do. Doctor said 10 years ago he needed to learn. He did not . It is on me. He was a vibriant guy who was fun to be around,we travelled, lived a great life. He had a high powered job disbarring lawyers in New York. Now he is reduced to looking forward to a bagel at Panera. It is breaking my heart. who is he? I care for him, but I cant figure things out in my head. He really is gone and has been for a long time. I take him to our clubhouse for all ativities. We are in a small 55 plus community so if he doesnt want to stay its minutes from the house. I miss my husband And I grieve everyday. What a lousy end for him and me. I am getting help in a couple of days a week. It is not that far gone for daycare. He would not like that. He has sound days...and remembers some things. But his spirit is gone he is childlike. I feed him and dress him and take him out just like I did my children. This is breaking everyone hearts, the kids, grandkids, seeing him brings tears to their eyes everydime. He talks gibberish sometimes making no sense, and they nod their heads in agreement. I am just worn out..he has been sick 15 years with all the heart attacks, open heart surgery and the cancer surgery. Our golden years............
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My 80yo father has never been Dx’d with a dementia, but he does have ongoing cognitive problems, is easily and often confused about facts, has memory issues, etc., maybe stemming from a TBI in the 1960s.

He was gravely ill with sepsis and kidney/bladder failure/infection in Fall 2014 and was recovering for some time after. He was frail and more disoriented than before. I’m not sure he’s ever recovered to the more spry guy he was when I first started caregiving to his mother in 2011, but he was able to come back some from being very ill and is at a stable place and a new normal for him, now 4.5 years later. I think his quality of life is as good as could be expected and he seems content.

I’m not a medical pro in the least, but I think what you want to aim for with your hubs is his new normal, whatever that is going to be for him. Dementia and aging are both a one way street. Having realistic expectations may help you to understand when he is recovered as much as he can be, and you can take comfort in that. Give it a couple months of recovery to see how his behavior and cognitive abilities improve.
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txagt39 Feb 2019
Man your post is way too familiar. I have grieved for my husband's situation since he began showing symptoms in 2014 and his diagnosis in 2016. He has been in a facility since June 2018 after he fell and broke his hip - he was never the same. Life changes and boy did it, for him and for me. I have days I am very sad, I miss him and our life as it was - but it is no more. I started taking Lexapro and it has helped me tremendously cope with all the new responsibilities at work and at home and dividing my time, going to see him, and time at home. I stay really busy which is good. I am now turning the corner with coping and I'm saying yes to my adult children when they want to go do something and are kind enough to include me. We are going out of town in April to my granddaughter's vball tourney and staying in a luxury hotel - I'm actually looking forward to it. My daughter in law said come Thanksgiving she wants us all to go to New york and see the Thanksgiving Day parade in person - scary for me but I'm going to do it. I want to take care of my husband every way possible, continue to love and care for his needs yet enjoy the journey of life myself too while I can - because as I have learned, it can all disappear in a heartbeat and I don't want to miss anything while I'm able. I still grieve for my husband and life as it was, but meanwhile I will continue to smell the roses and savor the gusto I can grab along the way.
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When those with dementia move it makes them unsure where anything is - going to the hospital was a move as far as he is concerned then he had another move when he came home so he is trying to re-establish everything & I hope for both your sakes he reverts back but it is not guaranteed to happen
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It did not with my dad. He was much worse and declined rapidly afterwards. The Fluoroquinolones Antibiotics they usually use for these infections cause terrible side effects and worsen and cause dementia. I know for a fact it caused my dads dimentia. He came home with after treatment for a bladder infection and was never the same.
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This is one of the least discussed side effects of dementia and Alz! Health problems (like urinary tract infections) can wreck havoc with the dementia brain. Anesthesia can plunge an MCI patient into deep dementia. Sometimes they come out of it, sometimes not. With my husband, middle-stage Vascular Alz, he had BIZARRE hallucinations for two weeks (almost always at 4 am) following a steroid shot in his spine for severe stenosis. The doc knew he had Alz, but never told us this might happen.

I have since learned to be wary of all medical procedures when it comes to my husband. Especially anything involving anesthetics.

Now, my husband uses medical marijuana for pain relief and agitation. Works great. But, start small. Less is more.
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Check his blood work to ensure other functions are in balance. Were medications added during his hospital stay? Read about proper dosages and study all medications together (as a whole). Look for drug interactions and side effects. Make sure he isn’t over medicated. Give him lots of love and ease him into a normal sleep schedule.
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I don’t have the answer for the ostomy bag, but I do know the feeling as I deal with my poor guy who just lets go wherever. I’m looking for mops that I can attach to my socks to dry the floor, as I follow my cleaning oceder mop around. I’m gonna see if I can invent something to help myself. Coming back from the hospital stay, I think, try to take control like the staff did there. “We’re going to do this now” and “your schedule is this and this”, I’m still looking for that firmness of voice that gets your loved one to co-operate but every time it does work I give myself a hug and say I’ll get through this.
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Monitor the sepsis and the pneumonia carefully.
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When a patient has been septic with an infection it can take days / weeks to recuperate. Was he on IV antibiotics or oral medication? Has he had follow up bloodwork to see what his levels are for Whiteblood cell count? Follow up chest X-ray? It could be possible that the antibiotics may have interacted with any dementia medication he is taking.
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Every situation is different, but I can tell you an encouraging story. After a week in the hospital and a month in rehab, my husband (also with dementia) was so much worse that he could do none of the five ADL's when he came home. The OT at the rehab said he'd never get back to baseline. But he did!

Luckily my sister was visiting at the time and helped me tremendously. We had a visiting NP, and soon got PT and OT as well. Being away from home made him quite crazy with hallucinations. He gradually returned to his merely forgetful, slow-moving self.

Be attentive and patient, and ask for all the help you can get. If you can get an aide in for the afternoon, take a break and go to the movies.
It's tough, but can definitely get better. I wish you the best of luck.
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Joycee1, I really sympathize and identify with your exhaustion and burnout. I have been in much the same place, several times (just not today) and have even found myself wishing, briefly, that he would die soon. I feel horrible saying that, and even for feeling it. But I've heard it's common. And so I forgiven myself. In any case, I've always known afterward that those are the points where I need to realize that I need more help at home with him. And so each time I've eventually hired more caregiving help. It is expensive and practically bankrupting us, since he doesn't have long-term-care insurance, but that seems better than ruining my own health, physical and mental, which has started several times to happen. I have to say that has helped a lot. Often I've thought I should be able to handle it all myself (and my husband wishes I would!) but I can't. No one can. I tried. Two years ago he came home from the hospital totally incontinent and demented, and overnight he would climb out of bed and fall, sometimes injuring himself seriously. I went four months without more than an hour of uninterrupted sleep and my health collapsed. So I hired caregivers overnight till this improved. Please don't let it get that far. What would happen to him if you totally burn out like that or get really sick? You sound as though you are showing the signs of being overwhelmed, and I hope you can find some respite or ongoing help with him. As his caregiver, you also need to care for yourself.
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I am so sorry you are dealing with this. My own experience is all too similar. My husband with advanced Parkinson's was hospitalized just before the holidays for a week with pneumonia and a urinary infection that became sepsis. This happened twice before, two years ago. The good news is that each time he has returned to his previous condition, though very gradually after several months and sometimes longer. I hope that is also true for your husband. Being in bed in the hospital can leave someone, especially someone older or sick, very weak, and also confused, or in my case even more confused. It's been a big relief for both of us to have his old self back. The bad news is that it has taken so long. Also, after the first hospitalization, he became so weakened and his balance so poor that he can no longer go up or down stairs, and has had to sleep on the first floor. But it's hard to,distinguish between his hospitalization and its causes, and the inevitable progression of his Parkinson's. I do know that sometimes elderly patients get something called "hospital-induced delirium," especially after a stay in the ICU, and that it can be long-lasting or even permanent. That doesn't surprise me, given all the disorientation, sleep interruptions, bright lights, loud noises, constant beeping alarms, and just unfamiliarity of a hospital environment. I wish your husband a full recovery. And I think I would follow up with his primary doc to check him out just to be sure.
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Hi,
im sorry you’re going through this. I too went through this with my husband last July. The dementia WILL subside. It takes some time ALOT of patience and love. It is frustrating and yes you feel loss. Finding balance is hard and most family and peers don’t understand. You have to think for both of you right now and that is scary. Play card games, board games. Get your husband thinking. Remind him to make lists. Give him small tasks. Reintroduce him back to life in small chunks. Socializing is a big part. Keep it positive.

Thinking of you
Michele
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Yiacookie Feb 2019
Wow, reading your answer to joycee1, gave me some hope and I just want to say Thankyou. I just signed up and didn’t really realize how many of us out there are finding ways to cope and sharing them could help us caregivers so much. I feel like the board games could help and I’ve found music helps with my husband. One day when he was in his other world and I didn’t think he was coming back, I heard a song and I started singing it all the time and one day he asked me to sing it. I don’t remember the name but the part I sang was “wherever you go or how long you’re gone, I will be right here waiting for you” so maybe music is another way the brain makes connections.
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One suggestion -- manage the screens in his life. Visual and sound input. Play some music softly in the background. If he's home, make sure he's seeing things he is familiar with, his favorite shows, listening to stories on tape (RBDigital is available from your library probably), even home movies. hospitals and visiting therapists often have the tv on regardless of what's coming at him. he's very sensitive to input right now. At a rehab facility, no matter how much I asked and pleaded that my mother's screens be carefully chosen, she would be in tears thinking crime dramas were real news and warning me there was a rash of murders in the neighborhood. (If somebody wants a viable business idea -- make a Eldercare cable station, of happy Lawrence Welk shows, Fred Astaire dancing...movies guaranteed not to have any death, murder or angst in them and NO ADS EITHER, because sheesh, I would put it on PBS or nature shows, and next thing there would be a bloody dead body advertising the upcoming murder mystery. Couldn't win for losing.)
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Fuzzman Feb 2019
What a great idea ! If I had the financial backing I would start that business myself- my sister and I always talk about having a tv channel that is on 24/7 just happy, positive programming with lots of music, dancing and old programs.
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When my mother had pneumonia, I thought she had lost her mind and she wouldn't come back. In the hospital, she had elaborate hallucinations and weird paranoia. But as the antibiotics began to work and she got over the pneumonia, she recovered her clarity of mind and was pretty much herself again.
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My mom was the same way right after the epidural shots on her back. Then, after she broke her arm, and leg, Mom’s dementia kept getting worse for a little while. After being in the facility, and was taking therapy, she was improving until she had pneumonia, and many health problems. 'Weird that on her birthday, I think she had the 'rally', and she made me think that she was going to get better. However, about three days later, her doctor called me to tell me my mom was not doing too well, and that she was eating well because of the pneumonia. Then, she died a week later.
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Yes ! Keep the faith but also keep the routine. He wont get better just lying in bed. And it will take time. But yes. He might not get 100% back but 95%. Pneumonia @ hospitalization does a # in all seniors, cognitive impairment or not. Is he getting any home therapy? He could possibly benefit from OT/PT/SLP. Try to resume his routines & rhythms as much as possible. He struggled to make coffee? Did he do it though? Was he Independent with ostomy care before? Dont sweat/stress the b’day info go for routines he had. Trust me they are fairly hard wired & need activating with patience & cues. When did he get up ho to bed change bag etc before? Whats most imp to you for him to do? What does he care about. Constancy & routine are keys here. Let him do things — take the standby cues role... hard contain your own emotions - but breathe & relieve them elsewhere. the standby give him time see if he figures it out & cue & positive reinforce the correct stuff. Get up go to bed eat meals etc same time every day. Pick 1 or 2 things like ostomycare & make coffee . Build from there. What’s imp to him? break the steps give him time to do it. Can he follow simple directions? Write them done & let him follow in his iwn time. Home OT & SLP can help with this . Im an OT & Ive seen it happen. I wrnt through this with my father & he went in hospital cognitively intact & reached a point where he couldnt fig out what a toilet was for &but using the aforementioned he did come back ... takes timez get dupport for you.
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Oh my gosh...so sorry to hear what you are coping with. Hospitals really need to do so much more in protecting the cognition of all older patients but especially one with dementia. Being hospitalized is traumatic in itself. I think there is always hope for improvement, especially once back home...you might want to check into SAIDO (I think that is how you spell it). It is a program that works with people one on one regularly to help regain function, but of course I wouldn't know if this would be helpful or not.
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After 2 taking care of 2 parents...they always seem to decline a lot when they go into the hospital. If there was infection, that seems to compound things. I've had them regain like 95% if not all. Hydrate...get him moving around...read to him 1-1 directly engage him. Read the newspaper. Makes a big difference. Smooth diet. It does not have to be the beginning of the end, especially if this was his first big episode.

My opinion. More you engage, hold his hand, etc. the better.

John
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Wranglingagedp Feb 2019
I completely agree with all of this as both an OT and an AgedP caregiver.
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Pneumonia used to be called the "old people's friend," as it caused a relatively peaceful death before the person lived on to develop lots of worse conditions--dementia being among them, in my opinion. My great grandmother had dementia in pre-Medicare/Medicaid times. She lived with my grandparents who never took her to a doctor (although I don't know if she had any conditions that would require medical care these days). When she quit eating, they didn't try to feed her and so she died. It sounds cruel, but she didn't drain time and money from my grandparents (who were busy during day with their flower shop) and my mom, who took care of her during the day. My family lived with my grandparents as well, they had big old house. If I develop dementia, my kids are under strict instructions not to call the MD to treat any life-threatening illness--pneumonia, heart attack, cancer--but to let me die. Why our society values life over quality of life is beyond me!
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He will probably not get back to the point he was prior to the illness. And with each illness or hospitalization he will not recover to the "starting" point.
He will improve. It may take weeks or months depending on how severe the illness was and how long he was in the hospital.
Side note this is a problem with ostomy's, feeding tubes and IV's people with dementia will pull them out. "they just don't belong" to their body and they do not understand that it is something that may be needed. (I will not get in to feeding tubes or other procedures that may not be wise)
Keep things as "normal" as possible, get him back on whatever schedule he was on before. If you have him in Day Care get him back as soon as possible. A routine is important and the sooner he can get back on track the better.

If this was a pneumonia caused by aspiration this may happen again. If it does happen again you might want to discuss with the doctor about thickening liquids so it will be easier for him. At some point the body/brain does not recognize liquids and will not close off the way to the lungs. This will lead to more bouts of aspiration.
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It might get better.... and it might not. Talk with his doctor to piece together a game plan. Then take it from there. Good luck.
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The pneumonia is putting even more pressure on his already compromised body. Mom's a zombie if she doesn't get a good night's sleep for example.

What's his BP and pulse ox?
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joycee1 Feb 2019
blood pressure very low about 110 115. Pulse good, he played tennis twice a week til this last sickness. He actually said today he wanted to play tomorrow. I said you have pneumonia you cant. He said how long is this crap gonna go on that I cant play tennis. Guess he is his cranky old self
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Yes having pneumonia compromises the oxygenation of the blood, thus less “fresh” blood to Major organs like the brain. It will take some time to get back to his baseline or where he was prior to his hospitalization.
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Great answers/advice given.  Based on my own experiences;  it may improve - or maybe it won't - time will tell.  When my Dad was hospitalized with the flu, it changed his life.  He regained his cognition for the most part, but he hasn't driven or walked without a walker, since.  My Mother had a traumatic event that landed her in the hospital and I thought she would never be the same.  Not so.  I am thankful to say that about two weeks later, she was back to herself.  (She has advance dementia).  I pray that things improve for you and your husband - One day at a time ....
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Pneumonia will have that effect on Dementia people even people without it. Just read that Sepsis was probably caused by the Pneumonia. But it is very serious.
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I am replying based on experience with my mother. In her case, yes, she did improve but it took time. We all thought she was near the end, but she wasn't. Her doctors did not give us helpful insight at all. Perhaps everyone is different so no doctor can say for sure. We took it one day at a time, and she slowly got close to her baseline prior to hospitalization. Maybe if your husband is recovering from pneumonia and sepsis and if new meds were introduced to treat it, those factors could be impacting his current status and ability to rebound. Once he fully recovers from those conditions, you may get a better picture of where he is at. I know this is hard. Prayers to you.
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Read up on something called “ICU delirium.” That’s what happened to my mom; it’s taken about a year for her to come out of it.
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Hazelthebunny Feb 2019
This happened to my dad! My dad who at the time was only in his 60s was in the surgical ICU after a big thyroid cancer surgery (he's fine now :-)) and he got really weird! He called me in tears and all he could croak out was "I want to go home, I want to go home" and all he would repeat to my stepmom was "I want TV, I want TV" all of which was really strange as he hates TV and never cries!! It took him a few days to come back around to himself again.

I hope OPs husband comes back around, poor fellow!
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