Delirium

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circular
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Re: Delirium

Post by circular »

Hi Phil, I'm so sorry you are going through this with your wife. I remember once reading that another caregiver would take her loved one's temperature every morning, because it would begin to rise right before another UTI. I'm not sure whether this would work in someone else's case, but it could be worth trying if it won't upset her too much, and especially if her doctor would agree to begin treatment at the earliest signs.

Also, in addition to this thread and in case you don't know about it, there is a great caregiver forum at the Alzheimer's Association website. Lots of participants in it either are or have been in the trenches with this disease, so there are many ideas shared there too.

I also just noticed that the AA has announced a new partnership that involves NIH funding for an app for Alzheimer's caregivers, to provide one-on-one coaching, education, and the like.

The association also provides a phone Helpline. I used it three times when I was managing particularly difficult situations and found it to be helpful.
ApoE 3/4 > Thanks in advance for any responses made to my posts.
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Re: Delirium

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Hi there (NF52) ... sorry for my delayed response. All excellent suggestions above which I have already implemented (some). For example every morning (8am) and every night (8pm) my wife ( Robin) gets a chance to Facetime with her son who is very supportive of myself and his mother. Robin still has delirium phases but they are not as bad as the earliest one. Her UTI infection is gone now but the delirium lingers on especially during the night .... she gets up between 1 and 3 am in the morning and turns all the lights on ... sometimes she tries to get dressed .... I don't try to stop her ... I let her do her thing by going to another bedroom ... when I return an hour later she is back in bed ... I turn the lights off ... and go back to the other bedroom. When she has delirium episodes there is no point in me giving her cuddles because her body language is obvious ... it says " go away" ... so I do. To make sure she doesn't get UTI again she takes Methenamine hippurate twice a day and I also give her Cranberry 70000. I try and calm her down at night I have tried GABA ( didn't work) and melatonin ( didn't work) .. her GP recommended Seroqil (didn't work) ... tonight I let her watch Swan Lake on you tube and that seems to calm her down. I just hope the delirium eventually goes away ... I can handle the Alzheimer but the Delirium in the middle of the night is getting to me . I am still reluctant to send Robin for Respite ... she would find this very depressing . I will continue to support her as long as I can. When she does not have delirium she is a very sweet / happy person. Once again thank you all for your wonderful support
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Re: Delirium

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PhilD wrote:My hopes are that the Bug will disappear and so will the Delirium. After that I can concentrate on making sure she stays clean . With showers after number 2 just in case and using antibiotic soaps.
Hello PhilD,

My heart goes out to you and Robin as you deal with this extremely difficult situation. I trust with you that she will return to her sweet self as the UTI is finally and completely brought under control. You have received a lot of wonderful advice and support already. I wanted to chime in with a little of my own experience as a nurse and a caregiver.

D-Mannose is a sugar that is found in cranberries. It has been used to help make the bladder environment unfriendly to bacteria so that they aren't able to stick to the surface of the bladder and urethra. It is important to follow the instructions of your attending physician. A UTI must be treated. An infection in the urinary tract can migrate upward to the kidneys. D-Mannose could well be a helpful supplement to consider using in addition to the antibiotic and then continued as a preventative when the antibiotic regimen has been completed. A friend of mine suffered tremendously with UTIs and after several years of antibiotics, a functional urologist recommended D-Mannose. For her, it has been a life-saver. Perhaps this is something you can ask her doctor about or an integrative specialist in your area?

Clean is good, but the genital area is not a sterile environment by design. Good bacteria are present which in most cases keep bad bacteria in check. Try not overcorrect the post bowel movement hygiene because using too many soap products can make the situation worse by upsetting the balance of beneficial bacteria. As has been mentioned, proper wiping after a bowel movement for a woman is from front to back. The bidet suggestion that NF52 made is a good one, if it will be received well by Robin. A shower would be okay if she is receptive to it, but again, do not use soap or body wash products too frequently and don't use antibacterial soaps or wipes down there at all. Adequately removing feces is the goal. Removing all bacteria will not be curative and could make the situation worse.

Does Robin enjoy probiotic foods? Yogurt and other probiotic foods can help restore the balance of good bacteria in the gut during (if dairy is allowed with the prescribed antibiotic) and after antibiotic treatment. Restoring balance in the gut can help tremendously.

My mother had dementia and developed paranoia about my dad as her caregiver. They did move from another state to be near me so I could help buffer the situation and stand in as her caregiver for "spa treatments" aka personal hygiene. Is there any support for aging people in your area that can include a caregiver to help with Robin's hygiene? Are you in the US or another country? Hang in there, PhilD! Trusting better days are ahead for you and Robin! :)

Warmly,
Rachel
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Re: Delirium

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Hi Rachel ,,, thank you for your suggestions and support. We live in Sydney Australia and yes I have just started to get the ball rolling for age care support. Takes about a year to be processed . I do give Robin probiotics and prebiotics ( yogurt , KImShi and other stuff). Yes you're right about the good bacteria ... I will stop using antiseptic soap. I will also get some D-Mannose but I do give her Cranberry 70000. Looking at the news on TV I can't really complain about my life.
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Re: Delirium

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PhilD wrote: Looking at the news on TV I can't really complain about my life. Philippe
Hi Philippe, Kudos to you for being able to see things from this perspective. I am so impressed that with all you are dealing with you can still see the bigger picture. It's good for your own mental health. And for me...a good reminder! Thank you!
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Re: Delirium

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PhilD wrote:Hi there (NF52) ... sorry for my delayed response. All excellent suggestions above which I have already implemented (some). For example every morning (8am) and every night (8pm) my wife ( Robin) gets a chance to Facetime with her son who is very supportive of myself and his mother. Robin still has delirium phases but they are not as bad as the earliest one. Her UTI infection is gone now but the delirium lingers on especially during the night .... she gets up between 1 and 3 am in the morning and turns all the lights on ... sometimes she tries to get dressed .... I don't try to stop her ... I let her do her thing by going to another bedroom ... when I return an hour later she is back in bed ... I turn the lights off ... and go back to the other bedroom. When she has delirium episodes there is no point in me giving her cuddles because her body language is obvious ... it says " go away" ... so I do. To make sure she doesn't get UTI again she takes Methenamine hippurate twice a day and I also give her Cranberry 70000. I try and calm her down at night I have tried GABA ( didn't work) and melatonin ( didn't work) .. her GP recommended Seroqil (didn't work) ... tonight I let her watch Swan Lake on you tube and that seems to calm her down. I just hope the delirium eventually goes away ... I can handle the Alzheimer but the Delirium in the middle of the night is getting to me . I am still reluctant to send Robin for Respite ... she would find this very depressing . I will continue to support her as long as I can. When she does not have delirium she is a very sweet / happy person. Once again thank you all for your wonderful support
PhilD
Hello again, Phillippe!

It's wonderful to hear from you. Apologies myself for a late reply. I donated blood last week and realized afterwards that my body had different ideas than my brain about the best response (my brain: "get lots done over the next days"; my body: "don't plan on being productive for at least 72 hours!" )

I am so happy to hear that Robin is able to Facetime with her son every 12 hours. She may feel calmer for an extended period afterwards, even if she can't verbally remember the call. I am so sorry to hear that she continues to experience episodes during the night, which might come under the very inexact heading of "sundowning". That may be due to changes in areas of the brain related to sleep wake cycles and to some confusion when she awakens in the dark. I think you are doing an amazing job of "reading" what she needs when you give her space instead of cuddles. I've known two women (one an aunt) who had a strong need to get up and dressed for church, re-experiencing habits of many decades. I suspect that, as they did, Robin eventually forgets why she felt the need to get dressed, feels tired again and returns to sleep. Thinking of it as her "new normal" rather than delirium may help you look at how to arrange both her room and your response to help both of you. Experimenting with soft lights (Christmas lights can be very soft and possibly soothing in the dark) or a white noise machine might tell you whether she could sleep better with some external cues or noise.

I have two sisters who sleep walked in childhood, sometimes talking to me, other times going down to turn on the TV. Neither ever remembered it and they both easily returned to sleep. Having shared a bedroom with one of them, my gentle suggestion would be to consider whether Robin can safely have these nocturnal awakenings on her own and safely return to sleep while you sleep in another bedroom. Your own mental and physical health are going to continue to be important for her welfare, my friend.

Your choice of Swan Lake sounds lovely! I've seen research and talked with speech pathologists who say music is one of the most resistant memories. People who seem non-verbal after a stroke or in later stages of cognitive impairment may hum or sing along to favorite melodies of their youth, or be able to follow directions that are sung. I hope you have many such evenings of good music.

I also applaud you for starting the process for care support. As the British author of a wonderful book titled "Keeping Mum" wrote about her realization that her mum loved the day program she attended, and later did well in a memory care home:. This isn't an exact quote, but it's close: "By the time you decide your loved one needs day care or a memory care home, it's well past time. You should never feel guilty about realizing that you need to plan for next steps."

We can never promise our spouses that we will not impose on them burdens we wish to avoid. But I am sure that Robin would do the same for her wonderful Phillippe and that her sweet self will continue to be visible to you.

Be well and safe in Sydney.
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Re: Delirium

Post by PhilD »

Hi NF52
WOW !! thanks for your email ... it's nice to know there are people "out there " who care and spend their precious time supporting people like myself.

I used to give blood myself when I was younger because apparently it is rare. A negative. Robin and myself and our children are all A negative. Unfortunately I had to stop giving because my blood is always low in iron and staying withing the normal range is not always possible. Fe infusion are useful.

Yes we have soft lights in the bedroom and we leave them on during the night. Robin is slowly improving ... she is more stable now and her behaviour is more predictable. I have also learned "tricks" on how to get her to do what is needed ( e.g take her shower, change into day clothes , take her pills etc..).. I guess I am using psychology. When she does not want to do something that is necessary, diverting her attention to something else and coming back to it later works wonders.

I think the night issues has been caused by the fact that she can't remember where the toilets are during the night so she gets up and turns on all the lights and opens every door. When I sleep with her ... I take her to the toilets and there are no issues after. It's better for me to sleep in the same bed because when i sleep on my own I keep worrying about her getting up and wondering around during the night. In a few months if things keep improving I will try to sleep in my own bed again.

Once again thank you ( and all the others who have supported me)

PhilD
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Re: Delirium (12 months on)

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This time last year my wife was operated for colon cancer ( grade 2) . After the operation she became totally delirious and had to return to hospital. She was treated for UTI and it took quite sometime for my wife to get over it. She is ok now. BUT during the last 12 months she has forgotten how to speak. When she speaks she does not make sense ( she is gibberish) . I was wondering what caused her to lose her speech ability ... Is it a new phase of Alzheimer? was it caused by the UTI infection or was it the anesthetic used during the operation? My second question is ? Can I do anything about it ? Would a Speech therapist help? Any response will be appreciated
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Re: Delirium (12 months on)

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PhilD wrote: Sat Jul 16, 2022 6:42 am This time last year my wife was operated for colon cancer ( grade 2) . After the operation she became totally delirious and had to return to hospital. She was treated for UTI and it took quite sometime for my wife to get over it. She is ok now. BUT during the last 12 months she has forgotten how to speak. When she speaks she does not make sense ( she is gibberish) . I was wondering what caused her to lose her speech ability ... Is it a new phase of Alzheimer? was it caused by the UTI infection or was it the anesthetic used during the operation? My second question is ? Can I do anything about it ? Would a Speech therapist help? Any response will be appreciated
Hello PhilD,

I am glad to hear some aspects of your wife’s challenges have improved over the past year, but so sorry that she has lost the ability to speak clearly. That has to be so frustrating for both of you! Is she able to communicate in other ways? For example does she write down what she wants to say, or do you anticipate what she means and verbalize back to her?

As to why this has happened, no one here could say with any certainty. Is there a neurologist in your area who could evaluate her to see what is going on? Speech therapy can be very helpful depending on the cause of garbled speech, but I would see that as a second step after investigating the “why” question.

Please keep us posted and know that you are heard and supported by the APOE4.info community in your unique challenges as a caregiver.

Warmly,
Rachel
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Functional Medicine Certified Health Coach
With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt
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Re: Delirium (12 months on)

Post by NF52 »

PhilD wrote: Sat Jul 16, 2022 6:42 am This time last year my wife was operated for colon cancer ( grade 2) . After the operation she became totally delirious and had to return to hospital. She was treated for UTI and it took quite sometime for my wife to get over it. She is ok now. BUT during the last 12 months she has forgotten how to speak. When she speaks she does not make sense ( she is gibberish) . I was wondering what caused her to lose her speech ability ... Is it a new phase of Alzheimer? was it caused by the UTI infection or was it the anesthetic used during the operation? My second question is ? Can I do anything about it ? Would a Speech therapist help? Any response will be appreciated
Hello again, Phillippe,

It's hard to believe a year has gone by already, although I am sure some of those days have been very long and even lonely. Robin must be feeling so much better without the UTI and the medications for that!

While I'm not an RN like Rachel, I'll go out on a limb and say from working with speech pathologists that it sounds like Robin has "expressive aphasia", which is really more of a label than a diagnosis of a cause. Aphasia is known to occur in some people with Alzheimer's or vascular dementia. The left temporal lobe, where speech and language originates for most people, also happens to be a target of tau tangles and loss of neurons in Alzheimer's. Below is a link to a 6 minute video by a neurologist at Mt. Sinai Medical Center in New York City explaining the many types and causes of aphasia. It came about after the actor Bruce Willis recently retired due to aphasia. What You Need To Know About Aphasia

The neurologist's advice to seek out a speech language pathologist, may help to sort out how much Robin is able to understand speech and language, or if she could use assistive devices, including picture choices or even representations of objects to communicate. You may already have figured that out yourself though.

Oral language is so complicated that it requires most children several years to speak clearly, intelligibly and in sentences, long after they can understand most conversations. In Robin's case, the six years or so since her diagnosis may mean that she is showing the effects of the slow progression of the disease, and not a result of anything the cancer surgery, UTI or medication for that caused. I have known other women, including an aunt, who gradually lost the ability to communicate years after the early signs of Alzheimer's, although sometimes they spoke easily in moments that were precious. I hope that Robin at least has such moments also.

If Robin is frustrated when you can't understand her, it may help to say something like "I know you're telling me something important. I didn't get it this time, but we'll try again later." Or "Can you show me the room where you want to go?" or even something like "I love your voice, Robin." When words fails us; we all still love the voice of loved ones, and a kind touch--both of which I know you have.

Nancy
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