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I think I would tell also. I told my Mom when Dad passed, and we made arrangements for her to come to the funeral. She didn't behave herself entirely appropriately, BUT its one of the few decisions I ...Read More

I think I would tell also. I told my Mom when Dad passed, and we made arrangements for her to come to the funeral. She didn't behave herself entirely appropriately, BUT its one of the few decisions I don't second guess or regret. It sounds like your Dad already kind of knows, somehow...maybe he knows that if she could come see him, she would, and she's been "away" too long. If they had a loving relationship it may kinder for him to know she has passed on rather than to think she stopped loving him, or worry about what terrible thing is keeping her still alive but unable to visit. Being able to talk about it even in the simplest terms and grieve openly may help him, and then you do not have to hide your grief either. You could always ask his doctor also if he thinks there is any increased medical risk to hearing this bad news. I am so sorry for your loss...may God bless you and yours at this tough, tough time...

Thanks.

Life is all about celebrating the joys and happiness of life, and putting up with the b.s. and bad times to get to those moments of joy. I will never change her,
 ...Read More

Thanks.

Life is all about celebrating the joys and happiness of life, and putting up with the b.s. and bad times to get to those moments of joy. I will never change her,

I think that part says it all, except maybe the part I noticed with my mom - that she simply couldn't live with the idea of not being perfect in herself. She was unable to handle criticism, ever, and never really understood it could be OK for *her* to admit a mistake or even being/doing wrong and then being forgiven. I'm dealing with someone in a small club I'm a member of who is much like that, and the flaskbacks are a bit painful at times.

Life can be very hard on them, probably harder than most of them have power to make it on us (at least as adults - while you're their kid growing up, you almost can't help but think you are this horrible person who can never do right!!). They get very boxed in to rigid ways of thinking and being by their very fundamental problem with being human. :-)

Thank you. Healing from this is a long, slow process, I'm findng out. Forgiving myself and Mom for "doing our best" when our best was well, not "the best" (!) takes more time than you'd think....but ...Read More

Thank you. Healing from this is a long, slow process, I'm findng out. Forgiving myself and Mom for "doing our best" when our best was well, not "the best" (!) takes more time than you'd think....but you know, that's what forgiveness is for. Hugs and thank you so much for sharing and supporting in prayer. When people ask why I believe, I tink the best answer is simply "Because I've been prayed for." I think prayers do much more than we imagine.

Not sure about the simple answer to your question - state laws could vary, or it could be case to case; as a guardian you would more likely have the absolute say so on it. You might want to consider l ...Read More

Not sure about the simple answer to your question - state laws could vary, or it could be case to case; as a guardian you would more likely have the absolute say so on it. You might want to consider letting her do it, if you can be sure it is all kosher financially. It might bring them both some happiness. Check with an eldercare attorney or at least the facility social worker to find out any effects on benefits or any other concerns. Most ALF and even skilled nursing facilities will arrange for husband and wife to share a room, sometimes with substantial cost savings also. If nothing else she should have semi-private room rate without the usual worries about getting along with one room mate after another. But, if the relationship seems abusive or not a healthy, friendly and supportive one in any way, you would at least want to involve some facility staff in helping assess it and guide the decisions and planning to deal with it in the best way possible.

You can probably appeal the denial on the grounds that she stil qualifies for PT for strengthening her legs/preventing loss of muscle strength and mobility, enable safe transfers, etc. She rpobably me ...Read More

You can probably appeal the denial on the grounds that she stil qualifies for PT for strengthening her legs/preventing loss of muscle strength and mobility, enable safe transfers, etc. She rpobably meets rehab criteria as long as there are functional goals for both PT and OT that can be acheived despite not weightbearing on the legs initially. They don't necessarily TELL you can appeal, let alone how. Admissions coordinators at the facility should help you with this process. Plesae let us know how it turns out! I suppose the alternative is to arrange a lot of in-home therapy serivces, and some insurers don't cover that very well either. Do your best not to let them get away with unreasonable denial of service. It really should not be this hard!

Guardian ship is suppoed to require the person to be given notice that it is being done and having an opportunity to contest it. If someone is already beign dishonest it would not supirse me that they ...Read More

Guardian ship is suppoed to require the person to be given notice that it is being done and having an opportunity to contest it. If someone is already beign dishonest it would not supirse me that they might try to trick the judge into granting it witout going through the correct procedures, and someone needs to help Mom contest it. Sister's POA can and should be revoked if the financial abuse can be substantiated. Almost every POA has that built into it. Guardianship is a very serious matter - not that POA itself is not a serious responsibility - and neither should not go to someone who does not have the person's best interests in mind.

As above. If someone is not competent, they cannot legally be doing anything with the POA (that's why you are supposed to do your POAs *before* you have a problem and need them!!) and it was not right ...Read More

As above. If someone is not competent, they cannot legally be doing anything with the POA (that's why you are supposed to do your POAs *before* you have a problem and need them!!) and it was not right for them to have done this. You may also want to contact your Adult Protective Services about the situation. .

Where we are, inpatient hospice let family stay all the time. They had a day bed to sleep on and a fridge and microwave in each room and if was a really nice environment. My mom had that fear of dying ...Read More

Where we are, inpatient hospice let family stay all the time. They had a day bed to sleep on and a fridge and microwave in each room and if was a really nice environment. My mom had that fear of dying alone too but at least there, we were able to make sure someone was with her all the time. Hubby covered a couple fo times when I was at work and fer favorite grandkid came in and spent time more than once too. She had been in a facility (skiled nursing) until her condition (vascular dementia, strokes, really bad heart) got too severe for them to be comfortable taking care of her, and it was further away where if something happened suddenly it could have been possible none of us could get there. If we could have managed Mom at our home I think that would have been best overall though. I'm just saying if you end up having to use a hospice facility instead of home-based, it may not be the bad thing your mom is really afraid of. I don't know how much Mom understood, but when the facility sent her to the hospice I explained that it was a different kind of hospital (her last hospital stay was very hard on all of of us and there was not a good reason to go back for another one as they had maxed out what they could do) and she decided she liked it there. May God bless and give you a little rest and a little peace, plus a little quality time to share and remember!!

Morphine may actually ease breathing as well as pain - it will relieve congestion casued by pulmonary edema (fluid/pressure build-up in the lungs) so it may be ethcially very much OK to give it to mak ...Read More

Morphine may actually ease breathing as well as pain - it will relieve congestion casued by pulmonary edema (fluid/pressure build-up in the lungs) so it may be ethcially very much OK to give it to make the actual dying part less awful, even if it makes that part shorter too. But that said, if you are not comfortable with that part then it would be right to have a nurse there instead or just because this is all very hard on caregivers to face death so directly. My mom had a bad heart attack in inpatient hospice that took her away - they gave morphine, which she absolutely needed as she was having classic, crushing chest pain for the first time ever... no one thought that was going to be it, though, and they left just her and me in the room - then her breathing changed and I sudenly realized this was it. I pushed the call button again, but no way was I going to leave the room to drag someone back in more immediately than they otherwise would have/should have come. I was glad I was there to hold her hand, but I wish someone had stayed to hold mine. When we had first checked in they actually wanted to take her off all meds except phenergan and oxycodone around the clock, assuming what we wanted was sedation and the shortest time to getting it over with, but I was still hoping for a little quality time, and I did insist they keep other things going...we got a wheelchair ride to the garden and a couple of pizzas shared out of the deal. I had not been comfortable when my mom first asked for DNR but with her heart the way it was, severe, diffuse, and inoperable coronary arteries, it would have been cruel to keep trying to make that heart keep working and I had to accept that. We could have tried a procedure called EECP but I did not think she could tolerate it, and we could have kept anticoagulating which was not really working anyways (she came into hospice having had another stroke and/or coronary event where she had passed out at the skilled nursing facility, even on the highest dose of Ranexa and nitro she could tolerate) and I still wonder if we could have had a little more time that would have been worth anything if we had tried that. So, no, it is not easy to decide, but you do have every right to talk it through with the doctors and nurses and settle on what you think is right and best in the face of the inevitable. It should not be a cookie-cutter one-size fits-all type of thing.

I just saw the post about the pennies and you storming out - if she behaves better for a little while, you'll know she has just enough marbles left to realize she went a step too far..but again, how c ...Read More

I just saw the post about the pennies and you storming out - if she behaves better for a little while, you'll know she has just enough marbles left to realize she went a step too far..but again, how could she really expect a stunt like that to have any kind of positive result unless she's lost quite a few of them??

Does she qualify for hospice? Where I live there is one that offers respite and some home care even inpatient/residential care that can become longer term if appropriate, and costs less than skilled ...Read More

Does she qualify for hospice? Where I live there is one that offers respite and some home care even inpatient/residential care that can become longer term if appropriate, and costs less than skilled nursing. (You mentioned leukemia.) DO get help. You are cracking under the strain and it is making it hard for you to see any value in what you are doing. It may be very true she can't help herself, or maybe she could have helped herself earlier if she'd seen what was coming, but you are both stuck with a very difficult, needy situation now. You may not be a hateful person at all, just stressed beyond your breaking point. I can just feel you hating your situation and hating your life and your wife and your self for hating it and spiraling downhill from there. The other concern I have if I am reading it right is that she is alone and helpless while you go to work, and that can't be a good thing. Or is she cognitively OK and can call for help so is safe to be alone?

So sorry you are going through this...if it helps any, many facilities require longer notice of intent to transfer or discharge, and if there are no facility staff who can help you, and worst comes to ...Read More

So sorry you are going through this...if it helps any, many facilities require longer notice of intent to transfer or discharge, and if there are no facility staff who can help you, and worst comes to worst, there is in most states an Adult Protective Services who could be conacted via hotline. POSSIBLY, there is a nursing home ombudsman who would know how to get to key facility people to get you more help and/or someone to lay down the law as "bad cop" that he could not take her home without being able to care for her safely - e.g. he would have to demonstrate that he could do her hygiene and remember her meds, etc. On the rehab unit we call this "rooming-in."

Thanks, mama...I have been blessed with a support group at Mom's hospice that will meet again next week, and I am definitely going. That, as well as this forum helped me more than I ever would have gu ...Read More

Thanks, mama...I have been blessed with a support group at Mom's hospice that will meet again next week, and I am definitely going. That, as well as this forum helped me more than I ever would have guessed too!!

God bless you and your sweetheart! My dad went on much younger than yours, but I too felt peace almost as much as grief because we had our chances to say the important things to each other. He had liv ...Read More

God bless you and your sweetheart! My dad went on much younger than yours, but I too felt peace almost as much as grief because we had our chances to say the important things to each other. He had lived a life of integrity and optimism, and gave more than he received.

Oh, Neesa...so, its really even worse than you were asking about originally; she really is losing / has lost her judgement. The purpose of cognitive assessment is not to put her in a home - there is n ...Read More

Oh, Neesa...so, its really even worse than you were asking about originally; she really is losing / has lost her judgement. The purpose of cognitive assessment is not to put her in a home - there is no magic diagnosis or score that means you have to go to assisted living or skilled nursing, it is all about what each family can actually manage safely for themselves and the person in need of care. Documenting incapacity may help you in practical ways as well as just being able to realize the severity of what you are dealing with; if the POA is simply never going to be forthcoming and you do have to take the next step of guardianship, for example just to access funds for any kind of care. My mom had always gone overboard on soem shopping, and as her mental faculties got bad, she also got pretty irrational, wanting to buy all kinds of gifts she cuold not afford to give to staff who would get fired if they ever accepted! I was able to just get hold of her QVC card and order only a few little reasonable things instead, or bring her things she'd already bought and forgotten about. Sometimes I felt bad about being sneaky, but it was probably the kindest and gentlest approach, as Mom never wanted to consider herself "confused" (and pretty much never did, despite some pretty wild delusions she developed!

You can respect Grandmom's wishes as far as reasonable and possible, but she clearly cannot be the one in charge and running the show. I'm hoping things will ease up some if she gets her infection treated, but she is not likely cognitively able to develop the insight to really voluntarily change her behavior or connect the dots between spiritual truths and how she should regard and treat other people. She may be able to handle *a little* firm but gentle limit- setting when delivered along with lots of reassurance, i.e. - "Grandma I know you're scared but you HAVE TO have that leg looked at - it does not mean we have to put you in the hospital, you will probably just have to have medicine for it; if you don't at least let someone look at it, "they" will think we don't care about you, and we do!" Please let us know how it all goes!

just a hug...

Hmmm...have you got some home exercise equipment? Music you could dance to? Even just a Theraband or some five to ten pound weights you could do stuff with in bed until your arms get good and tired. S ...Read More

Hmmm...have you got some home exercise equipment? Music you could dance to? Even just a Theraband or some five to ten pound weights you could do stuff with in bed until your arms get good and tired. Some people find any kind of physical activity works very well as a mood booster as well as a health builder. And IMHO, a little chocolate (even nonfat hot cocoa if you need to watch your weight) wouldn't hurt either!

"How about, which drug is best for whom?" AMEN to that, sister! There are still so many drug trials that include only healthy young men. There is info on adjusting thyroid dose for age, and I did h ...Read More

"How about, which drug is best for whom?" AMEN to that, sister! There are still so many drug trials that include only healthy young men. There is info on adjusting thyroid dose for age, and I did have a good doc take care of reducing my dad's meds when it no longer made sense to be on some preventives. They MAY get to where they can predict statin side effects on muscle at least, the way they do a couple of cancer drugs, but that may not help someone like me who had cognitive effects..and it did not help my mom who doubled her dose and got rhabdomyolysis...long, sad story there. Some of my colleagues who probably have not had to take much medicine themselves, or they'd most likely have had a little personal experience continue to frustrate me by not ilstening to what their patients try to tell them and try to blame or scold the patient. My patients absolutely get told potential side effects, my overall experience with any given drug, whether to just quit, taper off, call me, or ride it out for a limited period if they experience anything untoward. I do NOT want anyone dying or even beign ill from a side effect on my watch, as it really is a horrendous problem as you stated...that generation in particular is very prone to just take whatever they are told to take without asking a single question or really knowing a thing about it, which IMHO is a potenitally deadly attitude or habit to have. Now I need to disclose that I'm a pediatrican and rehab doc, so none of my patients at work are elderly; I had to learn about that side of things as we went. Modern geriatric literature does include listings of meds that should generally be avoided, yet not everyone knows about this - too many of us never bother to stay even superfically up to date in each other's specialities, which is another big part of the problem. (Don't even get me started on artificial vs. bioidentical estrogens - if only we all knew what the transgender endocrinologists knew about them, the whole approach to menopause would be a lot different, too.) But sometimes I feel fearful that something I really need and toelrate could be on that list when I'm older and they won't let me continue! I'm putting a lot of stock in the field of personal genomics, that it can be leveraged to find out exactly what is and isn't safe and beneficial for each of us, and where any of us might have different results than the larger study population as a while. We are definitely not there yet.

Correct you are on the article! Doc may say they also want to see results of a clinical trial of D-mannose, but he ought to be able to agree its harmless and MIGHT help. They can usually write an orde ...Read More

Correct you are on the article! Doc may say they also want to see results of a clinical trial of D-mannose, but he ought to be able to agree its harmless and MIGHT help. They can usually write an order to allow a patient to take "home meds" while in hospital. I probably should not admit I occasionally managed to sneak some things to my mom that they did not get around to getting the doctor's order for her just because I asked them to.

Mannose is in fact good stuff for UTI prevention. Actually ANY infection can set them off. Seroquel and all the related drugs can cause dypshagia. If and only if you and the docs find your loved one ...Read More

Mannose is in fact good stuff for UTI prevention. Actually ANY infection can set them off. Seroquel and all the related drugs can cause dypshagia. If and only if you and the docs find your loved one absolutely cannot do without an antipsychotic once everything else is identified and treated, one way to decrease the side effects, besides minimizing rather than escalating doses routinely, is to add a medication called Cogentin (benztropine).

Sometimes, I could not get other docs to keep mom on the supplements that helped her either. Maybe pulling a PubMed abstract or article to back you up would be worth a try.

Just a hug - you need it - wish we could send each other full-day spa treatments with full-body massage while we're at it!

HEY heart2heart, using a few @^!%!$s while caring for the ungrateful and dealing with the unhelpful at the expense of your own needs and wants doesn't make you unChristian in my book anyways. You don' ...Read More

HEY heart2heart, using a few @^!%!$s while caring for the ungrateful and dealing with the unhelpful at the expense of your own needs and wants doesn't make you unChristian in my book anyways. You don't have to pretend a pile of poop doesn't stink with us on these boards :-). Sure, probably its better not to call mom bad names, even if she really was one all her life and not just now, but you were at the end of your rope and beyond there for a minute, and you are still caregiving, right? Forgiveness is readily available for that sort of thing. Mom probably has so much less control over her self and her life, and probably has declining social perception and capacity for empathy that goes along with dementia, so reducing expectations for her behavior as low as you think you can reasonably go, and then going lower when you find you have to, may work out better. Hugs.

I heard it said by our local expert on again, Dr. Lipschitz, that there are two kinds of elders - those who stay active and involved, and those who don't. My parents were, sadly, definite type twos as ...Read More

I heard it said by our local expert on again, Dr. Lipschitz, that there are two kinds of elders - those who stay active and involved, and those who don't. My parents were, sadly, definite type twos as their health went down hill and really did not do a lot of joining in with clubs, etc other than sporadically when they were more middle aged. They tended to quit over any kind of disagreement or perceived slight or deficit.

I also don't want to be like that! OK, I'm going a little overboard trying to leverage current medical knowledge to manage my health better than my ancestors...hardly a day goes by that I don't Google something on antioxidants, insulin resistance or estrogen receptors...I'm on yet another diet...but the main thing I'm planning on doing is staying active and involved, like the older folks in my Kiwanis club. Some of them that I admired the most - the WWII vet who quit golfing at 90 because he was unhappy with his game, but took it back up again once he realized there was a chance he could shoot lower than his age - the guy who hit the pavement and sold more tickets to our fundraisers than the rest of us put together til about the same age, after giving his wife the best care in the world for a couple of years after she had a stroke - have gone on now, but they all "lived 'til they died." (As in the lovely refrain to an old Irish dirnking song, "if the whiskey don't git me, I'll live 'til I die!")

So, I'm not sure if I'm telling you to join Kiwanis or some other group that inspires you (though you may want check it out, it really is a pretty cool service club - http://www.kiwanis.org - maybe it's that focus on "Serving the Children of the World" that keeps us young) or not too drink too much whiskey, but seriously, make a decision to stay connected and involved, be accepting rather than perfectionistic about what you can and can't do, and figure out who you can trust to take care of you the way you want in case you ever need it. Do your best, let God do the rest - don't worry about it if you have really done what you can. That Faith thing means a lot to me too...but faith or no, just worrying without doing what you can won't help anything, and what you can't do, well you can't do it!

PS to emio - the personal trainer is a great idea...and don't forget to wear a helmet when you're riding again!

OK, deep breath here...the answer to the question you are asking is probably yes, if you have guardianship of her person, not just her finances, and that noramlly requires a couple of doctors to sign ...Read More

OK, deep breath here...the answer to the question you are asking is probably yes, if you have guardianship of her person, not just her finances, and that noramlly requires a couple of doctors to sign off on a statement of incompetency and for her to be given those papers to look over and possibly contest them before a judge says OK.

Realize that the LTC insurance company may be scamming to some degree - or not - by saying she needs care 24/7, they may be exempting themselves from having to pay a part-time aide or some other limited services that would let her stay at home more safely with less constant attention and hovering needed from you.

But, "She wants to stay in that house, all alone, watching TV." And she's got a little dog! - that probably could only occasionally visit if she was placed soemwhere else - if someone agreed to take care of it for her. If you and sis can continue to maintain her as you have, that could be best. She possibly is playing it safe both cognitively and physically by mostly sitting around doing something unchallenging, and it would be difficult and maybe even disorienting for her to adapt and make the adjustment to a new living situation. Possibly you could take additional steps to reduce falls risk as well. Would she wear a LIfeLine or anything that would ease your worries at all? Do you know what her bone density is? Honestly, if you nose around on here, some people manage to fall and break something in assisted living too.

There probably will come a point when she can't be left alone and/or needs skilled nursing care, and at that point, you may find that a lot of nursing homes now take pains to make themselves look more like assisted living. You may want to look around now and find which facilities are like that, and ideally which ones have some experience and familiarity with low vision situations. And until then, as you try to decide for her, focus on what gives Mom the best quality of life possible for as long as she has left - which usually (though not always) means seeing if there are ways to honor her preferences in any reasonable way.

If it helps any, my mom had vascular dementia and multiple physical disabilities where she physically as well as cognitively could not manage; I could not get her to agree to move to my city to a really nice assisted living and give up her home of 50+ years either. I tried to enlist a social worker at the geriatric evaluation to talk her into it, but she informed us she was done talking and started wheeling herself on out! I ended up being able to convince her to come to a rehab hospital near me sometimes later, after Dad (who developed severe dementia and Parkinson's, so she had placed in skilled nursing because she could not care for him) passed on, and then we just never went back. So I just used my POA, got her to resign as trustee so I could manage the sale and all that, and never had to put her through a guardianship, which would have devastated her and possibly made her hate me to boot! We had a little over a year together here in Arkansas, and ony a month or two before the end did she even realize she would not get strong and well anough be able to go home and live in her own home by herself again as she had so desperately and deeply wished and hoped. By then she really liked the idea of having full time care in her facility and getting grandkid visits a lot more often - she decided she would let us try to find her an apartment in town once she could walk again at least a little. We did the best we could to make good memories...it was hard and sad, but thank God we do have quite a few.

An elder law attorney may need to be involved to set up a trust and see that bills are paid. The facility SW is a great idea - they could try to pull together a team meeting with you and dad and see i ...Read More

An elder law attorney may need to be involved to set up a trust and see that bills are paid. The facility SW is a great idea - they could try to pull together a team meeting with you and dad and see if there are any specific concerns that could be addressed, which might settle him down, reassure him, or at least placate him by making him feel important. My mom's SW recommneded an elder law person they used a lot, but I found one by researching online a little more who definitely gave me more information and guidance than anyone else ever had, and the consultation charge was about $300.00 but some will do a shorter freebie/preliminary one first also. Bless you, its a tough situation.