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She wakes us every hour during the night with her call bell.

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HI Melicity,
It sounds like you need to take your mother to a doctor who can test her for dementia. Heart conditions can contribute to vascular dementia, but she needs to see a specialist who can give her a proper diagnosis. There are cases of mixed dementia, as well as people with heart conditions who have other types of dementia. A neurologist should be able to test her to see what can be done to help your mom.
Good luck,
Carol
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Melicity, could you say a little more about your mother's heart condition? My mother has had left ventricular heart failure for many years - i.e. more than 15 - which led about eighteen months ago to clinical presentation of vascular dementia; but her older age psychiatrist also believes there is some Alzheimer's involvement. Multiple comorbidities do make life very difficult for both physicians and psychiatrists when it comes to accurate diagnosis, of course; and on top of that she can't have an MRI scan because she has a pacemaker; but what I'm wondering is, what kind of medical input or intervention you like to achieve for your mother, here? I suppose what I mean is, that even armed with a diagnosis you won't necessarily find that your approach to caring for your mother is much further forward.

My mother is very different from yours in her attitudes to doctors - she might be dismissive (!) but I'm grateful that at least she won't refuse to see them. Though having said that there's a big difference as well between agreeing to see them and agreeing to take their advice… :(

Ref your mother's agitation, one thing I did notice alongside a worsening of the LV CHF in around Nov 2011 was that my mother became very depressed, so depressed that even she agreed that she was. Doctor granddaughter, much loved and trusted, persuaded her to try a very low dose antidepressant (Citalopram, ok with heart failure PROVIDED it's kept to a minimum, less than 20mg per day I think) which really did help her - it stops her obsessing about needless worries, round and round, and working herself up about things; it hasn't changed her personality in any significant way. I don't know if this would help.

I know doctors don't like to stray outside their particular specialties, but given your mother's reluctance to see anyone else I really think it's worth asking her cardiologist to step up, here. Your mother can't be his only patient with complex needs, and he can always consult if he's not confident about his skills.

I'm sorry you're having such a hard time, it's frightening and upsetting - you want to help but feel your hands are tied, very stressful. Hope some of the above is relevant or helpful, please come back if you'd like to discuss further. Best of luck.
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There was a segment on what causes little strokes in the brain area on 60 minutes last night...cbs/shows/60_minutes/video/UpjQdItVu2Lkn_n5zln9mGQw08eKjKL3/living-to-90-and-beyond-part-two-/

This study has been going on since 1980 at a retirement community in CA and has followed people who are now in their 90s. The findings are astounding.

I believe this is the url that leads to at least part of that study if you're interested. http://www.ncbi.nlm.nih.gov/pubmed/20186856
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Melicity, when your mother wakes you up repeatedly at night, is it because she's frightened? Needs something? Confused? Does she then sleep all day or is she restless during the day as well?

Is she Sundowning? What does she do in the evening? Is she doing anything that might agitate her? I assume that she's not eating foods with caffeine in them that might keep her awake. Does she then sleep all day or is she restless during the day as well?

I think CountryMouse's suggestion of having her cardiologist consult with another doctor is a good idea. He can share his observations and determine if there are any tests he can do (since your mother seems to trust him) to explore his potential diagnosis.

It seems like seeing an unfamiliar doctor or being in an unfamiliar medical surrounding is very traumatic for her, and there could be a variety of reasons. She could be afraid of another dire diagnosis, uncomfortable with the tests, uncomfortable and afraid in new surroundings, lots of reasons.

Wish I could help more but yours is a tough question. Know that you have my sympathy though, and I hope that you can get a good night's sleep tonight!
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I am very reluctant to add more medication to the mix. Mom is already in stage 4 renal failure. As I am the one that is mostly affected by her night restlessness, I dont want to medicate her just so I can sleep.
She is sleeping during the day and up every hour at night to use the restroom. She needs help to get there. She seems to be ok with her schedule :) She is on a water pill. I have already moved that pill up to 5:30 pm after consulting with the cardiologist in an effort to make the night trips less frequent.

More on her condition:
She has a congenital heart defect..leaking valve, hole between chambers, enlarged heart, CHF and stage 4 renal failure due to the meds for the CHF. She has had this congenital defect since birth and has vehemently refused surgery to correct it. The entire family begged and pleaded with her with no success. In the end, it is her body and she has the right to her decision. She is now past the point of having surgery and is in hospice due to the compounded effects of her conditions.

She is very alert on most evenings and sleeps little during the night. She sleeps during the day. She may be sundowning. I am currently looking into hiring someone to be with her in the room in the evening (another aide) at least 3 nights a week. I have tried keeping her occupied during the day in the hopes that it will regulate her clock...but it has not worked. She does not drink caffeine. She has a decent appetite..and many times asks for a meal int middle of the night...She has recently taken to chewing up any solid food and spitting it out on the plate. I cook low sodium, organic meals following the renal and CHF diets and supplement with organic plant based protien shakes. She will eat certain soft foods without spitting them out: eggs on toast, cream of wheat, soups, mac and cheese (she loves the mac and cheese and I have given in to this even though it is off of her diet because she needs to eat and enjoy what she is eating) She seems to have an issue with meat and anything that has a skin on it.

Rather than medicate her and add more toxins to her kidneys...I am feeling like hiring aides and adjusting to her schedule might be the best solution for her. Hospice is wonderful...they have suggested meds for sleep/anxeity as is their course to provide palliative care....however, I am not seeing her in pain or in any angst...she is just off schedule. Everything I have read says that adding these meds can actually do more harm than good.
I know it is a balance..and even though her time here is very limited...I want her to enjoy and be at peace with what time she has left. It is very hard to make decisions that are best for her in that sense. I think for now I will just follow her rhythm and try not to force a change.
I have asked hospice if they will stay with her round the clock...but it does not seem like they provide this care and told me that I would need to hire someone for that. They offer respite care and weekly check ins by the nurse. I think hiring the night aide (one we work out the finances) might be the best solution.
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She will probably not accept the aide, she is accustomed to your attention. If she is on Hospice, the main issue is not saving the kidneys. The most important thing is keep her comfortable and relaxed. Meds to sleep at night or you will be incapacitated when she needs you most. If that means morphine, give the lowest, 1/4 dose and see if that helps her sleep. As you get closer to the end, her agitation will increase, and so should the morphine. Just enough to keep her feeling warm and fuzzy. Hospice will be coming more often, at the end they come in twice a day. Let them handle the needs of the patient first, and your needs second.
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Melicity I understand your point of view, but I also agree with PamS that clinical priorities change at this stage. On the other hand, you're the one dealing with it, and from all the detail you give, and the sheer length of time you've spent learning about your mother's condition, you clearly know best what is right for her.

Citalopram is safe for kidneys, by the way; it's one of the EKG intervals it affects, but only in higher doses. But if you feel that your mother's agitation isn't disproportionate or inappropriate, then I'd agree it's better not to add to the drug load. I also admire your respect for your mother's choices. It's easy to respect them when we agree with them! - very much harder when we know they're going to mean bad news.

You're dealing well with an incredibly hard part of the road. Best of luck, I hope things go gently for you - but yes you MUST one way or another get help so you can get uninterrupted sleep or you will be in trouble.
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Melicity - I didn't see how old your mother is. My mom had triple by pass surgery at the age of 83. We thought everything was fine, but as it turns out, this is when her dementia must have been starting. After the triple by pass she had knee replacement, cancer removals, and about two years ago, was diagnosed with stage IV renal failure, and is now getting insulin.

About eight? months ago she was admitted to a geriatric psyche ward because she kept telling the doctors (three times to the ER with this one) that she was 'constipated'.

She wasn't.

Turns out after they tested her, i.e., Montreal Cognitive Assessment, along with MRI's, etc., she diagnosed her with vascular dementia along with paranoia, i.e., she was thinking people were dead, etc.

I guess the point I'm trying to get to is I, too, was hesitant with the meds they wanted to give her. She is now on a small doze of Mirtazapine, Effexor, and Olanzapine. These meds are helping her sleep extremely well where she was not sleeping before. She no longer has 'constipation'; I'm monitoring her diet for her multiple conditions, which include the Stage IV kidney failure, high blood pressure, etc., etc.

She is, however, EXTREMELY AFRAID OF GOING BACK TO ANY DOCTOR, EVEN THE DOCTORS SHE ONCE TRUSTED. I believe this is because of her experience in the 'nursing home' as she calls it.

I don't tell her anymore when she has a doctor's appointment. I know it sounds awful, but when she gets there, the doctor tells her very gently that he/she is not going to place her back where she was, and just does the exam, etc. She's even gotten used to going to see her psychiatrist, which she absolutely refused before.

This is extremely hard and frustrating for both me and I'm sure her. At times I just want to run away. At times, I cry. At times, I yell. I have no one here to help me, family is in another state and I'm the only sibling.

I can only tell you how I handle this. When neighbors and/or relatives call, they say she sounds 'wonderful' but what they aren't really hearing is every time they call, she says the same thing. Never adds anything to anything. And never, ever starts a conversation. This coming week, we are going to meet a new geriatric physician because I've moved her down to my house and we need to have someone who at least knows who she is so when something does happen, there's some sort of familiarity. She also needs monitoring of every condition every three months.

After we go to the doctor's offices, I try to do something good with her, i.e., take her out for a treat that she normally can't have, which she really looks forward to.

The truth of the matter is as we age our bodies are going to fail us no matter how many times they've been put back together and no matter what we do. I'd rather my mother's life be shortened somewhat (and I know, she's nearly 91, so what am I talking about????) than have her worry and lose sleep. A person with dementia really cannot make good decisions. You have to weight the benefits of the medication versus the deterioration of her kidneys and other organs. Once the mind starts to go, I believe it's time to stop worrying about the other organs. If your mother's kidneys go to stage five, is she eligible for kidney transplant. Dialysis is no picnic. I'm sorry if I sound rude, but I'm so tired, I'm trying to look at this logically, not sentimentally, so please forgive me. BTW, I have actually IMPROVED my mother's kidney function and diabetic numbers in the eight months I've had her home to where doctors are absolutely astounded. But it is of little consolation because I see her mind is deteriorating despite the improvement. If she needs sedation of some sort for sleep, for both you and her, just do it. You'll both be happier.
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Hi gig, lilt dogtoo and country mouse. Mom is 76 years old. As I said regarding the sleepless nights...she doesn't seem to have an issue with it. I think I have more of an issue with it because of not sleeping. hospice tends to just give you medication for everything and I don't want to get her started on morphine and the other meds for sleeping that they are suggesting because I think that it will not improve whatever little time she has left. If she were in pain or distress constantly...I would certainly reconsider. The two things that I am doing to try to help her stay comfortable are working with the cardiologist to balance her medication in order to keep the fluids down keep the stress off of the kidneys but yet keep the fluids from the congestive heart failure in check.
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It is a delicate check and balance we weigh her daily and adjust the meds while consulting with the doc.
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