View Full Version : Questions about Alzheimer's Disease
Teacher Terry
1-12-16, 4:20pm
I have a good friend with this disease at age 64 who just had to go to a facility. Her hubby was dying of cancer and could no longer care for her and no other family. I am her medical power of attorney. So of course she is depressed but is going downhill fast-in 3 months she lost 20lbs. She is on an anti-psychotic so she doesn't leave the house to look for dead people that she thinks are alive. If she takes 1 pill a day she paces the home almost 24-7 with a few hours for sleep. If she takes 2 she is a zombie. Can't talk, eat etc. Either way she can't eat much-due to pacing, or being out of it etc. I had the doctor order Ensure 3x's/day. My worry is that she will get so weak she will need a wheelchair or that she will die. Anyone have experience with this type of thing and what did you do?
ApatheticNoMore
1-12-16, 4:34pm
So how is she losing weight? Forgetting to eat? Because Alzheimers by itself doesn't mean rapid weight loss I don't think. Of course loss of appetite might be a side effect of certain meds.
The anti-psychotic seems misprescribed, is that typical for Alzheimers patients? They aren't really effective in halting memory loss but aren't there actual Alzheimers drugs not anti-psychotics she could try? Is even the Alzheimers correctly diagnosed (it's not easily tested for physically but they base it on symptoms and cognitive tests usually). 64 is early onset I'd figure.
iris lilies
1-12-16, 4:43pm
I have a good friend with this disease at age 64 who just had to go to a facility. Her hubby was dying of cancer and could no longer care for her and no other family. I am her medical power of attorney. So of course she is depressed but is going downhill fast-in 3 months she lost 20lbs. She is on an anti-psychotic so she doesn't leave the house to look for dead people that she thinks are alive. If she takes 1 pill a day she paces the home almost 24-7 with a few hours for sleep. If she takes 2 she is a zombie. Can't talk, eat etc. Either way she can't eat much-due to pacing, or being out of it etc. I had the doctor order Ensure 3x's/day. My worry is that she will get so weak she will need a wheelchair or that she will die. Anyone have experience with this type of thing and what did you do?
Terry,
Tell me what is the downside of her getting so weak she will die? This is not a snarky question. What did her medical directive say about continuing food and hydration?
Teacher Terry
1-12-16, 4:44pm
Unfortunately she had it since she was 50. She is on a med for her disease but the anti-psychotic is for the hallucinations. She is losing weight because she is either pacing too much to stop or eat or so out of it she doesn't want to eat. Depends on how much meds she is taking. The home has to keep bringing her back to the table. I had to stop taking her out to eat because I couldn't keep her at the table. I am sure she is depressed because in 3 months she lost her hubby, home, life etc and had to go to a facility.
Teacher Terry
1-12-16, 4:48pm
IL: I forgot to add to my post that it might not be that bad an outcome to just die. Her directive says no heroics, no feeding tube etc. No one will force feed her. She is one of the sweetest people on the planet and so was her her hubby. I am struggling because he is dying right now and I am fearful we will lose her too. I just don't want her to die because I didn't manage her medical care well. She is seeing a top neurologist. WE reduced her meds 3 weeks ago because it appeared she was over medicated but I never dreamed that this would cause her to pace non-stop.
I'm not sure what the difference is between Alzheimers and plain old dementia, but my mother had it. I had divorced her, although she was living in a condo that she rented from us. Anyhow.....long story short, 13 years after I had seen her last, the police called and she was found driving erratically in another county. There was no one else to take care of her, so I had to step in. I have no idea how long she had been going downhill, but it seems she's always been a bit peculiar. I put her in a home, where she was diagnosed with Alzheimers and then we took her to a place that had that kind of unit. She, too, seemed to progress quickly. But her weight loss stopped once they began watching that she did, indeed eat. They made sure she took all her meds, too, which I doubt she had been doing. I believe she may have been on an anti-psychotic because she was hard to control. (But who knows if the meds made her worse?).
Is she eating anything on her own? Have they tried giving her high calorie/nutrient drinks? Is it a respectable place? Is the doctor checking on her and doing labs to insure she's physically okay? (with nothing that could be easily corrected).
Like you mentioned.....the best thing might be to let her go. We struggle so hard to keep people alive........long after we should some times. I think many times, in these homes, it's almost necessary to keep the patients medicated heavily because their behavior is so hard to deal with. I'm so sorry for your friend and his wife. What a horrible way for life to close for them. :(
You can only try to do your best for her.......and try to make her comfortable. I know it can be a really challenging time.
I agree with Iris Lily. I would just make her as comfortable as possible and hope she goes peacefully. Under no circumstances would I want to linger on without my mind, especially if my partner was gone. Did she ever express an opinion on the matter?
It's not unusual for devoted couples to die within months (or hours!) of each other. I would try to let this play out as naturally as possible.
Medication adjustment should continue - there are many doses in between 1 pill and 2 pills.
She is likely grieving for her losses, can't really express it, and therefore appetite is poor.
As her friend your best approach is to visit her and to be available for treatment team meetings with her caregivers. All the while realizing that she may not regain the weight and may go downhill fast. It's difficult to say the least, but your presence when you can visit will be a good thing in her life.
Teacher Terry
1-12-16, 5:34pm
Tammy, I was wondering if maybe 1 1/2 pills would be a happy medium. Unfortunately, the only decent place she could afford is an hour away. WE go every week and stay the day. I chose the home and everyone there is really nice and responsive when I call, etc. Her hubby was just too sick to help with any of this. They were so devoted to each other. She survived 7 bouts of ovarian cancer-diagnosed at stage 4 so was always fighting to live. She really wanted to live. Of course she never thought she would also get this. Once she got it she refused to accept it and I have had to be the bad person that convinced her hubby she couldn't drive before she killed someone, etc. He wanted to pay us to take her in but I couldn't do it. I am not young myself and it is too much. All her friends dropped away during this time also so now it is just me and my DH. Once she got in the home Oct 1 by the middle of Nov she was bad but I thought it was from the over medication. Now I just think the disease is taking it's toll. I would not want to live like this either. I just want to feel that I did right by her when it is over. If I had not stepped in she would be a ward of the state now.
No easy answers, but you are definitely doing the most you can for her under these circumstances. We should all have a friend like you.
freshstart
1-12-16, 6:51pm
hospice takes Alzheimer's patients who meet certain criteria, losing 10% of body wt is one of them, how many words she can say, what part of daily activities can she do, i.e.: walking, bathing, dressing self, there are more. She sounds Hospice appropriate to me and they are a huge help even when someone is in a nursing home. They offer an extra layer of care and they are just fabulous with working with friends/family/doctors. Even at that end stage of Alzheimer's, she could still live a year or two and hospice can stay in as long as she continues to decline. She sounds appropriate to me. Some nursing homes don't let hospice in and that really sucks, hopefully hers does.
We used psychotropic drugs with dementia/Alzheimer's patients who were hallucinating horribly and were scared or the behaviors were so aggressive the caregiver could not provide care or the patient never slept and was in delirium. These drugs are not ideal, can in some cases be considered a chemical restraint, but when you see the sea change in a person who was having scary hallucinations you start to believe in their appropriate use, as in someone pacing all day. If your friend is on Nameda or Aricept this late in the game, it's probably not necessary, can actually cause more side effects (one of them (I forget which) is actually energizing so really not helpful if she is pacing) than they help and these drugs are very expensive. It is great that you have a neurologist involved. Hospice staff are experts at these behaviors and how to minimize them and promote a better quality of life.
Now, if you decide on hospice, many physicians decline to refer their patients because they've got the "less than 6 mos" rule in their head. They don't understand we can take on an end stage patient who may have many, many months left of living at this stage but as long as she keeps declining, she can have services. If you get MD pushback, anyone can make a hospice referral, a friend can make it. Hospice then talks to the attending and they iron out the issues, the Hospice docs are amazing at converting primary docs who just fear that the patient may not die in 6 mos.
that's my Alzheimer's/dementia shameless Hospice plug but I've seen it help over and over and over again
I commend you for the way you have taken on this couple, few people would do that
freshstart
1-12-16, 6:55pm
I would not want to live like this either. I just want to feel that I did right by her when it is over.
you did and you are
Williamsmith
1-12-16, 7:35pm
I would second freshstart that Hospice can be a very helpful tool at this stage.
I learned a lot about this disease by watching a 2014 documentary about Glen Campbell's farewell tour......Netflix
Glen Campbell...Ill Be Me
I recommend it.
And you are a saint.
Teacher Terry
1-12-16, 7:45pm
Thanks for all the kind thoughts & advice. I really appreciate it. This has been a rough year for my husband and I because his kids live in the adjoining state and he has been sick for a long time so we were actually taking care of both of them the last year. He would have to be driven to CA VA hospital and I would have her move in with us while they were gone. They were trying to stop his cancer. Then he lost his physical ability to talk & hear from the surgeries and could not drive due to meds so we had to do everything for them: errands, phone calls, etc and about the time I got them all kinds of services so we could stop going there 3x's/day and just go once he got too sick to take care of her even with hospice so I had to find a home for her and he ended up going to his son's in another state with hospice care. For the past 3 months we drive her up to see him every 2 weeks which takes all day. Talk about an exhausting year. He is now sleeping all the time so no longer taking her plus I don't think I could keep her sitting long enough for a 6 hour drive. I did see that special on G. Campbell and really enjoyed it. This has to be one of the worse diseases there is.
iris lilies
1-12-16, 8:36pm
Sweete, her directive says no heroics.
This is is not about you, please do not make it about you. It's about her.
i can sure you that in the same situation I would want no heroics, keep me sedated and comfortable for pain, let me die.
iris lilies
1-12-16, 8:41pm
My mother had Alzheimers disease,
my brother and his wife are in the medical field so it's not just me here who,was making decisions. We did not think of taking her to a top neurologist. We stopped her Aricept prescription because what is the point of of it? and let's save some tax dollars while we are at it.
Nature taking its course sooner than later in s NOT a bad thing.
ApatheticNoMore
1-12-16, 9:13pm
If the directive states no heroics then likely none will be done. But a lot of things won't be legally be considered heroics I guess, like getting a person who is not eating to willingly eat by changing their meds etc., so that's exactly what the gray area is.
I would probably want my living will to state: perform heroics (but maybe not after my mind was gone, that seems less desirable). But anyway I don't think what is going on here is about what is covered by the directive.
iris lilies
1-12-16, 9:42pm
If the directive states no heroics then likely none will be done. But a lot of things won't be legally be considered heroics I guess, like getting a person who is not eating to willingly eat by changing their meds etc., so that's exactly what the gray area is.
I would probably want my living will to state: perform heroics (but maybe not after my mind was gone, that seems less desirable). But anyway I don't think what is going on here is about what is covered by the directive.
i know, and agreed. I guess that I would say if "heroics" are in a range, stop them at the the beginning of the range. For me, anyway. And if I am hallucinating on the MF drugs you are pushing on me to keep me controlled ,then again let nature take its course.
Williamsmith
1-12-16, 10:52pm
It is good advice to know your limits but some people just have a greater capacity for acts of kindness and love. I think OP falls in that category.
When the boomers start reaching the at risk age.....we will face a national crisis because we are not making enough progress with this disease. It will overwhelm our nursing home capacities and our children will not have the luxury of being retired and able to care for us. I am hoping to find a supplemental insurance that will cover much of the costs of skilled nursing care.
freshstart
1-12-16, 11:42pm
I agree, Williamsmith, especially because it is such a long, drawn out disease that families just can't do it at home, a lot of patients are living 10 yrs with it and the last 5 are very difficult, care wise. And I've had patients bed bound and contracted in the fetal position live like that for 2 years on applesauce and water. They are supposed to aspirate, get pneumonia and die at that stage or get an infected wound that goes septic, all kinds of things so that they die early once in this stage. On hospice, that was not the norm. How are we going to pay for all the boomers during their last 5 yrs with it? It will be a crisis.
Dementia and ALS- my two worst diseases that I would want to die quickly, no such luck with dementia.
Teacher Terry
1-12-16, 11:51pm
So some of my dilemma is when I met her it was 16 years ago when she was in remission from stage 4 ovarian cancer. All she ever said was that she wanted to live. Now we all become great friends and go thru 6 more bouts of this disease and she has no directive. Then 2 years ago they diagnosis Alzheimer's and say she probably had it since 50 from the reports but we all thought is was chemo brain-7 surgeries and 5 chemos in 7 years. During all this time she has no directive. Fast forward to 6 months ago hubby realizes he is dying and has her do a directive. After 5 hours of trying to explain what this once brilliant woman can't understand she signs it. Her husband assures us this is what she wanted and I have no reason to doubt him-he loves her move then life itself but I don't know what she really wants. This is not about me-I love both of them deeply but I have to live with myself. Also doctor tells me last week that due to 7 abdominal surgeries she may end up with a bowel blockage due to scar tissue and I have to think about whether we do surgery or not-very painful and without it she will die. Must be big possibility or I don't think she would mention it. I start to think there is a very good reason that people much closer to her for the past 30 years want nothing to do with this. Her hubby asked everyone. I am just trying to do my best for her. Probably the toughest decision of my life.
Teacher Terry
1-13-16, 12:08am
IL: not hallucinating on the drugs but doing that when not on drugs. It was horrible. Anti-psychotics take that away which is a blessing. Your empathy is under whelming. Sh is really suffering and I am trying to help with that. If this is about me I would have done what everyone else is doing and that was nothing.
freshstart
1-13-16, 12:18am
I would trust that he knew what she once wanted. I would think dealing with all that cancer, they had a discussion about when to let her go when that day came and he can extrapolate that to this disease.
People who aren't surgical candidates with bowel obstructions (common in end stage ovarian cancer or like the doc said, scar tissue) can be made perfectly comfortable with currently available meds for the gut and pain meds, sometimes a tube is placed to allow some of what accumulates to drain, patients naturally stop eating and drinking and then pass within a period of a few weeks usually. If a doctor is saying this is a horrible way to die and pushing surgery, get a second opinion because with the right combo of meds this is not necessarily true. And don't forget surgeons may not have the most up to date knowledge of what to use if surgery is not chosen. a gastroenterologist or Hospice doc would know what to do. Bowel surgery is no walk in the park.
iris lilies
1-13-16, 1:07am
OP, I know this is a big dilemma for you and you do have to live with yourself,with whatever decisions you make.And if drugs are keeping her from hallucinating that's good,
I,misunderstood about them, sorry.
It IS key to relieve her suffering now as much as possible while she is mobile and conscious. Its good for her that you are there.
I don't see why bowel surgery would be contemplated for her, this looks like another heroic measure to me. But I don't need to understand.
I just know what I would want in the big picture of that situation.
Williamsmith
1-13-16, 4:33am
This is my experience just so you know where I am coming from. This is not expert knowledge speaking here. I have an aunt, my mothers sister, who has Alzheimer's and is in a nursing home. She had supplemental insurance that allowed my cousins to get her in a nice nursing home in a special unit. The room is very small but clean and draft free with staff that are not over stressed and are consistent. That is the best you can hope for. She does not have additional complications.
I delivered maintainace and end stage drugs to Alzheimer's units all across Western Pennsylvania. There is a great disparity in levels of care. It is a sad comment on our great society but quality of care is directly proportional to wealth or poverty. The worst conditions are in homes that cater to those on government subsidy and pay no out of pocket expenses. Some of these conditions can really challenge your belief in the latent goodness of mankind.
Some nurses are so overworked that they are insensitive to situations that need attention. There is a standard that is acceptable but it does not reach the level of true intervention of human suffering. This is where the OP is filling a critical void. It makes a huge difference if someone from the outside is simply there monitoring the quality of care and being the squeaky wheel. Some residents have no visitors and their care can suffer, not saying it must but saying that in general you will see those with visits being attended to on a more consistent basis.
Most homes have a resident physician. I have seen homes where this physician does not see residents on a regular basis but manage their medications from afar. This leads to over and under medication and to a system where much waste and mismanagement occurs simply due to lack of input and information. Is it negligence? Or simply disaffection? I cannot say, just observation. Again this is where the OP shines. It truly can make a huge difference in the quality of final days.
Lastly, as this post is getting long and less useful, my mother is an ovarian and colon cancer survivor. Several surgeries and a few years of intense chemotherapy later she is currently comfortable and relatively independent at home. At 82 she is getting along quite remarkably but there is daily challenges and fears of bowel'obstruction. Just goes with the territory and she has repeatedly told us that she wants to die on her feet, no heroic interventions that prolong a suffering existence. There is a valley one has to traverse to get to the other side. I don't believe one should have to walk it alone. It is up to us, the friends, the family, the professionals to make sure everyone gets a companion to at least show them through the door.
It can mean great sacrifice. Some cannot provide it either mentally or physically. Some will not inconvenience themselves. But it is a true gift to bestow on someone and a gift I believe that will not be forgotten.
freshstart
1-13-16, 11:46am
when I quote lately, it makes me quote the whole thing so I won't re-quote what Williamsmith said. Spot on. Just add that if you have the assets to get into one of the better homes in the beginning, they cannot kick you out when your assets are gone and you go on Medicaid. One of the few things that work in favor of the elderly. If you start out on Medicaid, you have to be immensely lucky to land in a good spot.
Ultralight
1-13-16, 11:49am
This may sound rough, but if I get diagnosed with Alzheimer's Disease I hope I still have the wherewithal to take a long, long canoe trip on a cold, cold day...
iris lilies
1-13-16, 11:54am
This may sound rough, but if I get diagnosed with Alzheimer's Disease I hope I still have the wherewithal to take a long, long canoe trip on a cold, cold day...
You know, it's not the same for everyone.
My mother didn't have some of the typical and awful symptoms that the OP's friend has such as early onset and hallucinations. She did have some unreasonable fears, and certainly had frustrations, but she still had some enjoyable experiences in her life until her last year. Then it was definitely time for lights out.
Teacher Terry
1-13-16, 2:48pm
Thanks for the info about the bowel obstruction, etc. My MIL actually died after having that surgery for a 2nd time. She was a rare case that got it 2x's in 2 years. This will give my hubby & I time to decide if it does happen what we will do. Fortunately she is an a decent place that she can afford. However, as her level of care goes up so will the price. In a year she qualifies for Medicaid once their savings are gone. Where we live the price is double what she is paying. She is in a small town an hour away. WE vary what day we go so we can see what is happening. The staff told me recently that they see us more then most families. The problem with people saying that they would kill themselves is that by the time they get bad they no longer recognize it. YOu would have to do it too early to have the mental faculties to do it. It is different then something like cancer when you realize how sick you are. I don't know if the home has a doctor but we use a good local GP and a top neurologist in my town. However, the docs rely on me to report how she is doing with the meds because I see her so much more then they do. I can easily get the neurologist to adjust her meds when something is not working.
freshstart
1-13-16, 3:12pm
Robin Williams had Parkinson's with Lewy Body dementia, which hits young and hard. In my mind, it is within the realm of the possible that this is why he committed suicide. If I ever get dementia, which honestly with having lost so many IQ points and forgetting so much, like "did I eat today?", I'm a little worried they're just gonna say I have early onset dementia even though they keep reassuring me it does not present the way I present, anyway, if I was told in the early stages when I could still make decisions, I hope physician assisted euthanasia will be common place. Because I wouldn't want to go out as early as Robin Williams did and do it myself, but I would want to go before the suffering and being a huge burden starts but I'm too out of it to do anything about it. If not, the burden is on my brother to do what I could not. If on hospice, medicate the shit out of me even if it hastens my death. And he would need to make sure that is what is happening. I would never put my kids through the burden of caring for a parent with dementia.
Freshstart,
I have a question about "medicate the shit out of me even if it hastens my death" since that's exactly what I want, too.
So here's my question: are hospice doctors more likely to give strong doses of morphine etc. than non hospice docs? Are they more simpatico with my wants than general physicians? I've heard that one needs to shop around to find a dr who is not leery of giving strong doses.
And, can you recommend wording that I can use in a medical directive to get my wishes met?
I suspect that " no heroic measures" is too general to have meaning. I might say " no surgeries" or at least "no surgeries that take place in my body cavity." I don't really know what to say.
There is a pretty decent chance I'll get Alzheimers disease.
freshstart
1-13-16, 4:10pm
hospice docs I would say do prescribe the higher doses needed partly because docs are monitored in NYS for how much they prescribe, so because of that and fear of addiction (which is stupid to worry about if the patient is dying), fear of hastening death and all the other stigmas, they dose lower. But they are the ones doing the ordering once the patient is on hospice, they agree once we are involved and we make recommendations. Except methadone, that makes them nervous so the hospice docs provide that. The thing with dementia patients is they often don't need high doses of morphine unless they have a painful co-morbidity.
Hospice's motto is to neither hasten death or lengthen life, so they are not going to hand over massive quantities expecting that patients and families to hasten death. But we don't count keep track of doses given (unless we suspect someone besides the patient is taking the med), it would be very easy when it comes down to the final weeks to give more than perhaps necessary.
But that doesn't solve the dementia patient's previously agreed upon wish to die before being a burden. There really is no palatable solution for this. I plan to tell my brother to say whatever he has to say to convince a doctor I am in pain and suffering. Get the med and then it's up to him to decide when it's time. But I have to make sure he doesn't just overdose me out of the blue, he has to show I'm using the meds regularly probably for months and then start giving me extra, mixed with xanax, throw in some ambien. Clearly, I have not thought this through and I think it sucks that I have to come up with some crazy, illegal plan just to die with any sort of dignity. And worry he would be arrested. We give more dignity to dogs.
If I have a painful cancer, I won't have to worry about this, he'll be able to medicate the crap out of me without arising suspicion. God help me if this post ever got out to my family or my doctor. And to be 100% clear, this is not the way I practiced hospice nursing, I never did anything to hasten death, nor prolong life, well, we tried to prolong life to the best of our ability when a patient had a special milestone they wanted to reach. I know and agree, that it is illegal to do it professionally, I just wish this were not true personally, when it comes to my own death.
As far as advanced directives, the biggest thing is to choose someone to speak for you when you can no longer do so, a healthcare proxy. And then tell this person in detail what you would or wouldn't want. In some states, like NY, unless you have specifically told your proxy you do not want artificial nutrition and hydration, you're likely to receive it. So I always tell people to write on the proxy form "my proxy knows my wishes regarding artificial nutrition and hydration", you don't have to say what your wishes are, just that you have notified the proxy. Some states have turned to using a form called MOLST instead, it is way more detailed. So you really do not have to have a living will if you have a proxy that you know will follow your wishes, but it can't hurt. Just from what I saw, the doc took what the proxy said as truth and they rarely read long, drawn out living wills. You just need to have that discussion with your proxy.
things I have told mine (and written down for them): ~I want pain meds if I am in pain even if it hastens my death
~if i am terminally ill, I want to be a DNR and then that leads to a whole host of other things I do not want if terminal, surgery unless it's for comfort, no antibiotics if death appears near or I am demented and contracted into the fetal position, no hydration or artificial nutrition and then just keep thinking about what you would want and not want, touch base with your proxy as the years go by. And also make sure they know what you want if you are young and healthy, like I am ok with CPR and a vent for a reasonable period of time at this stage of my life.
did that help? I can be more detailed if needed. Oh and give that proxy to every doc, every hospital visit, to your actual proxy (duh) and I shrunk mine down and carry it with me in case I get hit by a bus. The form is free, incredibly easy to fill out and most states have it for download on their website. You do not need a lawyer.
Teacher Terry
1-13-16, 5:58pm
I have a friend on hospice care so have learned some about this. If you are terminal you have to literally carry the DNR with you everywhere you go because otherwise paramedics have to do CPR. So an elderly man that is dying goes out with his daughter 1x/week for lunch and he forgets it. The restaurant calls paramedics even though the daughter told them not to and they revive him since they forgot to bring it. Ugh! I guess he was really pissed.
freshstart
1-13-16, 6:07pm
yeah, we tell them keep it on your fridge and take it with you when out. That sucks that the restaurant overrode the daughter's wish not to call an ambulance. My mom doesn't want to be resuscitated, she carries it with her and has it on a medic alert bracelet
Teacher Terry
1-13-16, 6:22pm
When my Mom was dying of cancer, slow and painful she hung it everywhere-all the doors of her house, her refrigerator, her purse, etc. I was shocked when I went to see her because she was always so meticulous but she was fearful big time about this happening. That other poor soul-that was the only time they forgot to take it. I guess he suffered for a few more weeks before dying.
iris lilies
1-14-16, 10:40am
Ugh, these stories of a dying person's wishes gone awry are sad.
freshstart
1-14-16, 2:52pm
less than 5% of advanced terminal cancer patients even survive a CPR attempt (in 11 years I had zero patients with advanced cancer survive CPR), and what is their quality of life after that? The majority never come off vents. It was hard to have patients with very advanced disease, 80+ yrs old who still wanted CPR and the works but usually as time passed the patient and family would change their mind and become a DNR. The bad cases just remind me of how important it is to talk to the people who care for you and love you, make sure they understand your wishes and keep necessary documents at all times.
Teacher Terry
1-16-16, 2:21pm
So I went to see my friend yesterday and her hubby is close to dying but she doesn't know this. However, she tells me that "they are leaving soon and she will miss me." I asked where they were going and she didn't say. Then her hubby who doesn't know how bad things are for her emails me that he thinks she will die within months of him going. I thought wow they are so connected at the soul level. She is talking more but still pacing. I did a lot of research on this and it appears you either drug them to the point they can barely function or you let them pace. She did tell me that she doesn't feel as peppy as she used too. I told her the drugs were probably still leaving her system. After that conversation I thought if she gets an obstruction I will just let her go. She lost another 13 pounds in 10 days so the size smaller pants I bought her were too big. I have the home weighing her weekly now but they also started the ensure. So I just walked with her for hours and talked and was there for her. The staff commented that she is more social now. Well she was a big talker before she went into the home. So I think the reduction in meds was the right thing to do. Ugh! This is so incredibly hard.
rodeosweetheart
1-16-16, 2:32pm
God bless you, Teacher Terry. I am really sorry for your pain. So hard, what you are doing, and such a kind thing. Bless you.
Teacher Terry
1-16-16, 2:37pm
Thanks-I really appreciate the support.
So I went to see my friend yesterday and her hubby is close to dying but she doesn't know this. However, she tells me that "they are leaving soon and she will miss me." I asked where they were going and she didn't say. Then her hubby who doesn't know how bad things are for her emails me that he thinks she will die within months of him going. I thought wow they are so connected at the soul level.
It's been my experience that--especially in people who are less than lucid--there is often a lot of psychological preparation for death.
Not long before he died, a relative of mine remarked "Mother and Dad are here. They're upstairs." (There was no "upstairs" in the building.)
Another one named people who had died previously, including a sister they couldn't possibly have known had died. So there will probably be a gathering of friends and relatives as the days go on--whether that gathering is real or imaginary depends on your belief system. It's devastating to lose people you are close to, but it seems than this couple will be leaving together, which should be a huge comfort to all concerned.
Teacher Terry
1-16-16, 3:02pm
About a month before my Mom died and she was not on drugs she told me that both her parents were sitting on the couch next to me. She told me that they visit so often now that she knew her time was close and she was dead a month later. Jane, I agree that it will be for the best.
freshstart
1-16-16, 3:36pm
It's been my experience that--especially in people who are less than lucid--there is often a lot of psychological preparation for death.
Not long before he died, a relative of mine remarked "Mother and Dad are here. They're upstairs." (There was no "upstairs" in the building.)
Another one named people who had died previously, including a sister they couldn't possibly have known had died. So there will probably be a gathering of friends and relatives as the days go on--whether that gathering is real or imaginary depends on your belief system. It's devastating to lose people you are close to, but it seems than this couple will be leaving together, which should be a huge comfort to all concerned.
I saw this countless times, even if it's just the brain firing memories or something, this made it hard to believe that there is nothing after.
teacherterry you are doing great. It's ok if she can't do 3 cans of Ensure, that's a lot this stage in the game, and it's ok that she naturally slows down her eating and weighs less. In terms of the pacing, does she sleep at night or is this a 24/7 thing? It sounds like you made the right choice on the meds. It is amazing how souls connect
Teacher Terry
1-16-16, 4:04pm
FS: she paces during the day and sometimes at night. At night they put her back to bed and she can usually sleep at least 4 hours at a time.
freshstart
1-16-16, 4:24pm
FS: she paces during the day and sometimes at night. At night they put her back to bed and she can usually sleep at least 4 hours at a time.
that sounds ok unless she's agitated. This poor couple, so sad
I got an email from a sibling who was scared witless by the movie "Still Alice." I don't know why she particularly thinks she's vulnerable because no one in our family has ever had it, but I realize it's not all genetics. I think we also realize there's not much to do to be sure you don't get it either.
But thank you Teacher Terry for this thread because it's important for everyone to read the details of the symptoms of this disease and how best to manage it, even if coping is one day at a time.
Teacher Terry
1-17-16, 4:10pm
FS: she is pacing because she feels an urge to move and is somewhat anxious. Lainey, when they do autopsies I read that they find aluminum in the brain. I also saw a pic of one and in a normal brain it looks like a bunch of spaghetti noodles that are all in line, neat etc. With dementia it looks like someone scrambled a bowl of spaghetti noodles. I saw that movie and it was good but scary. I just refuse to think about it as no one in our family has it but they had other bad things. It doesn't pay to dwell on it because there is no way to prevent it.
FS: she is pacing because she feels an urge to move and is somewhat anxious. Lainey, when they do autopsies I read that they find aluminum in the brain. I also saw a pic of one and in a normal brain it looks like a bunch of spaghetti noodles that are all in line, neat etc. With dementia it looks like someone scrambled a bowl of spaghetti noodles. I saw that movie and it was good but scary. I just refuse to think about it as no one in our family has it but they had other bad things. It doesn't pay to dwell on it because there is no way to prevent it.
There's a theory now that Alzheimer's is a form of diabetes, and that controlling insulin production is the key to preventing it. If that's true, it's not as hopeless as it seems.
There's a theory now that Alzheimer's is a form of diabetes, and that controlling insulin production is the key to preventing it. If that's true, it's not as hopeless as it seems.
A dominant theory, or the theory du jour?
A dominant theory, or the theory du jour?
I guess that remains to be seen, but it seems to be gaining ground.
The thing is, you have nothing to lose by maintaining tight control of your insulin/blood sugar, as doing so will likely prevent diabetes and all the complications that come with it.
I wonder if that's related to another headline I saw recently that intermittent fasting helps brain health. I didn't read the details, but it makes sense that modern humans who are not as physical as even a generation ago may not need to eat 3 meals a day/7/365.
freshstart
1-17-16, 11:08pm
it's amazing the things they find, like the ancient diabetes drug, metformin, may prevent or help treat cancer. It also being given to people at high risk for diabetes with the thought it may prevent diabetes.
I take it because I gained weight from an anti-depressant that kills me with unbelievable carb cravings, so I was put on it to prevent diabetes (strong family hx) and to help lose wt. That last part isn't working but I've been on one of these types of drugs for over 10yrs, have gained a disgusting amt of weight but my blood sugars and A1Cs have stayed normal. And I totally believe it's because metformin is preventing the diabetes.
imagine the ramifications for cancer, it bogles my mind
Some researchers (eg. Thomas Seyfried) see cancer as a metabolic disease, involving the mitochondria. Seyfried promotes a ketogenic diet, which is also said to be useful for Alzheimer's. Every time I think of Alzheimer's, I think of Ronald Reagan and his jelly beans.
Teacher Terry
2-2-16, 8:01pm
I just wanted to update everyone that her Neuro Doc prescribed a pill to stop the pacing and if not working within a week then they will give her 2/day. She continues to lose weight. Also just found out that her ovarian cancer is back for the 8th time. We will not treat but provide palliative care. I am glad that she won't be one of those unfortunate people that suffer with Alzheimer's for decades.
I'm glad and sad for her at the same time. The 8th time with a side of dementia? the universe is cruel
The universe is preparing her to leave about the same time as her beloved husband. That seems like a gift to me.
Williamsmith
2-2-16, 10:04pm
My mother is an ovarian cancer survivor as well as colon cancer......her mind is still very clear but her sister is now in an Alzheimer's unit. The massive doses of chemotherapy made her feet numb but she still has her life, restricted as it is. Her surgeon of 15 years and four serious surgeries recently hugged her and told her she was a miracle.
Teacher Terry
2-3-16, 1:55pm
WS: your Mom is a miracle. One doctor told me that all the rounds of chemo my friend had contributed to her getting dementia so young. Jane: I agree it is a blessing. The thought of her suffering for years in that home was horrifying. So glad she and her hubby will go together. They are both wonderful, kind people.
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