Medical Forum / Diseases and Disorders / Alzheimer's / January 2005
Depression among the families of Alzheimer patients
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Tana - 29 Nov 2004 06:04 GMT I am looking for personal information, if comfortable, about the families struggles with this life alterting disease. The effects it has on those left behind, and those who are living around it today.
Tumbleweed - 29 Nov 2004 08:05 GMT >I am looking for personal information, if comfortable, about the > families struggles with this life alterting disease. The effects it > has on those left behind, and those who are living around it today. Just out of interest why did you copy your message to another group with no relevance to Az? (talk.abortion) I ask because trolls sometimes use this tactic to try and flood other groups
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Sarah Kanary - 02 Jan 2005 02:30 GMT I am dealing with BOTH my parents who are Alzheimer's patients.....yet their insurance says that they have no medical necessity for either visiting nurses or nursing home care.....it's perfectly "healthy" for my also diabetic father whose legs are numb from neuropathy and can hardly walk or see, to try to keep my advanced AD mother from wandering out of the house, hiding their hearing aids & glasses, money, ATM cards.....walking in to the neighbors' house without knocking and telling them that this strange man is in her house trying to get her to take pills.....she can walk for miles, about the only physical thing she still remembers how to do....but Dad can walk only a few steps so must just sit and watch her leave because he can't see well enough to manage locks....and all my sister and I can do is stop in regularly to take care of laundry, baths, doctor visits, prescriptions, banking, shopping, etc. and come running when the emergency calls come, then hope for the best. We try, but neither of us can be in two places at once.
Only after their health has deteriorated sufficiently will their insurance pay for SOME nursing services. IF there is a "medical necessity"......but if the "only" problem is that they are a danger to themselves and others, they can be confined to a hospital/nursing home for only 72 hours....as if that's going to 'cure' them.
So all we've got to help them with is as much of our time as we can spare from our own families, lots of worry and hoping for the best. Dad absolutely refuses to put Mom in a nursing home even on a temp basis for 'respite' care, which is all he/we can afford anyway.
About a year ago, my own memory problems had progressed to the point that others started to notice......I was starting to forget to make bank deposits, something I had NEVER done in over 20 years.....forgetting how to cook after doing so for 20+ years.....doing things like driving several miles on a flat, SHREDDED front tire and never noticing......these things are NOT me!
So the diagnosis is: Major Depression. As an added bonus, I also have something called "temporal lobe epilepsy" also known as psychomotor epilepsy.
Yet, after all this, I look at what I've just typed and think "Ugh! That all may be true, but I've never considered myself as 'depressed'"! After all, I know concentration camp survivors that aren't this messed up. It's not what you get, but what you DO with what you get that makes the difference.
I can only describe watching both your parents disintegrate before your eyes as this: Imaging being fed through a chipper/shredder very, very...slowly....my mother used to say that the last step in growing up is burying your parents....so what is this?
I feel much better now. If anything I said can possibly benefit anyone, it's worth the telling.
Sarah Kanary
>I am looking for personal information, if comfortable, about the > families struggles with this life alterting disease. The effects it > has on those left behind, and those who are living around it today. Evelyn Ruut - 02 Jan 2005 04:29 GMT dear sarah,
first, pardon my one finger typing, but i am nursing an injury at this time.
i sympathize deeply with your plight. you and your parents really do need help. you should contact the alzheimers association in your area and try to see if they can help your family out with your mom. if there is an adult daycare center near you it could give your family at least some relief while you work out the rest of the details.
in my area the health dept does what is known as a PRI screen which determines competency. after that you can try to get the person placed in a safe place such as a nursing home with an alzheimer wing, but be aware that if that person has assets, those assets are subject to being liquidated to pay for their care.
it might make extremely good sense for you to have a consultation with a lawyer who is a specialist in elder law before you do anything else. i cannot stress just how important this is, enough. you also need a good evaluation by your family doctor to determine your mom's condition. even if it seems obvious to all, this is important if you are going to get some help for her. proper diagnostics and good legal advice are absolutely necessary. make lists and make a plan, even if you yourself are having difficulties. you need to get this stuff in place and fast.
i must say that time is only going to make matters worse, so waiting to act won't help. i hope you can get a family meeting together, make some definitive plans regarding your mom's safety and her future. good luck to you and yours.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
>I am dealing with BOTH my parents who are Alzheimer's patients.....yet >their insurance says that they have no medical necessity for either [quoted text clipped - 53 lines] >> families struggles with this life alterting disease. The effects it >> has on those left behind, and those who are living around it today. Sarah Kanary - 02 Jan 2005 16:55 GMT Thank you for your concern. :-)
Unfortunately, we have looked into the 'competency' issue, and it's not that simple. Mom and Dad gave their POAs to each other years ago. Mom is clearly incompetent, BUT Dad's AD is not progressing nearly as fast, so he is still legally able to use his POA on Mom's behalf. So all decisions about Mom are in Dad's control. Their lawyer confirms this.
And Dad absolutely refuses to hear of Mom being put into a nursing home. It is useless to press the issue, because Dad can't afford it anyway, Mom is only 74, her diabetes and hypertension are controlled with meds, she is physically fit for her age, so she could be in a nursing home for quite a while, yet with no "medical necessity" insurance will not pay, even if they liquidate all their assets.
So they could exhaust all their assets within a few months, then Mom would STILL get discharged because of no ability to pay. Then they would be worse off than they are now.
We've contacted the local Alzheimer's foundation, and the local Area Agency on Aging. They visited my parents to make an assessment, and my Dad calmly told them that he can take care of Mom for now, and since he has POA there's not a thing us kids can do.
My brother is a nursing home administrator in another state, but is licensed in this state as well, and confirms these grim realites. He can't (or won't) help with their care personally, but he IS much better off financially than me or my sister, and will pay for visiting nurses to supplement our visits to them. But even he cannot afford nursing home care for one of them, let alone both.
One benefit from all this is that it has helped me get other things in perspective, and see what's REALLY important.
Sarah
> dear sarah, > [quoted text clipped - 83 lines] >>> families struggles with this life alterting disease. The effects it >>> has on those left behind, and those who are living around it today. Evelyn Ruut - 02 Jan 2005 18:03 GMT dear sarah,
a sad situation. the saddest part is that all too often families don't make definitive moves till some disaster ensues..... like maybe their loved one getting lost or setting the kitchen on fire or overdosing on prescription meds they forgot they already took that day. i am grateful every day that we got my mother in law here with us before any real disaster came to happen.
good luck and take care of yourself.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
> Thank you for your concern. :-) > [quoted text clipped - 119 lines] >>>> families struggles with this life alterting disease. The effects it >>>> has on those left behind, and those who are living around it today. Dennis P. Harris - 02 Jan 2005 20:49 GMT > So they could exhaust all their assets within a few months, then Mom would > STILL get discharged because of no ability to pay. Then they would be worse > off than they are now. She would NOT be discharged! Once assets have been spent down Medicaid would pay for her care. The rules on spend-down vary from state to state, and many states have homestead exemptions that prevent taking their home as long as a spouse is living in it. In most states, the state would file a claim against the estate after the surviving spouse dies.
You can't be certain that they would be worse off than they are now without talking to an attorney experienced with your state's laws regarding Medicaid and other assistance programs. Don't assume the worst, GET THE FACTS even if you have to do without your impaired father's help.
From your description, things will not be able to continue as they are for very long before there is a crisis, since he is obviously not able to provide the care she really needs. You need to prepare NOW for that eventuality by checking out facilities NOW before you need them.
You also need to steel yourself for the unpleasantness that could result if you have to have your father declared incompetent so that you or a sibling can exercise the POA and get your mother the care he is not able to provide. Remember that he is NOT rational. If he has a dementia his reasoning is impaired.
Evelyn Ruut - 02 Jan 2005 21:48 GMT sarah i just wanted to add that dennis is exactly correct in what he says below. you have to apply for medicaid and they won't put her out while they wait for it to come through. i just went through all of that in the past year.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
> >> So they could exhaust all their assets within a few months, then Mom [quoted text clipped - 27 lines] > the care he is not able to provide. Remember that he is NOT > rational. If he has a dementia his reasoning is impaired. Sarah Kanary - 03 Jan 2005 01:32 GMT >> So they could exhaust all their assets within a few months, then Mom >> would [quoted text clipped - 4 lines] > She would NOT be discharged! Once assets have been spent down > Medicaid would pay for her care. If there is no 'medical necessity' Medicaid won't pay either. We've already checked.
>The rules on spend-down vary > from state to state, and many states have homestead exemptions > that prevent taking their home as long as a spouse is living in > it. In most states, the state would file a claim against the > estate after the surviving spouse dies. If Mom went into a nursing home, Dad would lose her income, and he cannot afford to continue living in their house on just his income alone. So their house would have to be 'liquidated' to pay for her, and eventually, his nursing home bill. I don't care if all their assets must be liquidated, I just want them safe. However, I suspect (hopefully I'm wrong) that others are more reluctant to relinquish their inheritance at this point.
> You can't be certain that they would be worse off than they are > now without talking to an attorney experienced with your state's > laws regarding Medicaid and other assistance programs. Don't > assume the worst, GET THE FACTS even if you have to do without > your impaired father's help. We have gotten the unfortunate facts from both a lawyer and our brother, a nursing home administrator licensed in our state.
> From your description, things will not be able to continue as > they are for very long before there is a crisis, since he is > obviously not able to provide the care she really needs. You > need to prepare NOW for that eventuality by checking out > facilities NOW before you need them. Yes, we've checked out nursing homes in our area, visiting them, speaking to their directors, and they all say the same thing: Cash on the barrelhead since there's no 'medical necessity'. Neither private insurance, nor Medicare, nor Medicaid will pay if it's not considered medically necessary.
> You also need to steel yourself for the unpleasantness that could > result if you have to have your father declared incompetent so > that you or a sibling can exercise the POA and get your mother > the care he is not able to provide. Remember that he is NOT > rational. If he has a dementia his reasoning is impaired. Unfortunately, secondary POA went to my sister 3 years ago, shortly after my Dad was diagnosed with AD. At that time, I still had both their secondary POAs. However, Mom overheard the doctor explaining to me privately that he could revoke Dad's driver's license on the spot or have the State retest him. But all she heard was me saying "Oh please, have the state retest him" and decided that I was trying to get Dad's license revoked. Mom then talked Dad into taking POA away from me and giving it to my sister, who still insists that Dad doesn't even have AD since his MRI was normal a year ago. Sis has officially declared Dad "undiagnosed" from AD. She thinks Dad's cognitive abilities are just fine, thank you. I have spoken to his doctor and he is amazed at my sister's myopia. Btw, my Dad is STILL driving, but that I am taking into my own hands. People's lives are at stake, so whether he or my sister like it or not, I'm contacting the State tomorrow. Or the doc who diagnosed him with AD. Or his eye doc, who says his vision is too poor for driving. I'll be the bad guy but that's just tough. I don't know what my sister is waiting for, a tragedy?
Dad wanted to see the ocean 'one more time' so my sister and I, along with our families took Dad and Mom to the ocean for a week. Somehow I ended up flying down and back with them, plus they stayed in my apartment the whole week. My sister stayed next door and helped out with them, but was not present to see Dad asking me 3 times a day which bedroom was his, holding out a handful of pills for himself and Mom twice a day and asking me "Are all these different?" or alternately collapsing in tears or yelling his head off when Mom hid the soap in her stocking, kept trying to walk out the door, or dug through the garbage and stuffed it in her pockets.
Thanks to all for the input. I'm still not giving up on researching the options. I don't know if my sister is better adjusted to all this, or just delusional, but I can't wait around to find out.
Sarah
Evelyn Ruut - 03 Jan 2005 01:43 GMT sarah,
if it is as bad as you say, your sister will not be able to remain in denial much longer. we went through that with a few of my mother in law's friends. ultimately it got worse and there was no more room for denial. sadly, it is what it is.....
good luck.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
>> >>> So they could exhaust all their assets within a few months, then Mom [quoted text clipped - 83 lines] > > Sarah Dennis P. Harris - 03 Jan 2005 06:58 GMT > If there is no 'medical necessity' Medicaid won't pay either. We've already > checked. then talk to her doctor, and make sure that he finds a medical necessity. seems to me that fact that you father also has AD would make it such!
maybe your parents also need to change docs?
and as for the sister in denial, have the doc that was amazed at her myopia talk to her. he certainly can, since she has a medical POA.
fyi, i'm actually grateful that my sister has to do all the executor stuff now, since mom was so pissed when she lost her license that she changed her will so that i wouln't be the executor. she wouldn't let me have the medical POA because she knew that i would tell the doc if she wasn't taking her meds.
turkey in the straw - 03 Jan 2005 13:16 GMT I haven't posted much lately but read every post. Thought i would update a bit.We moved in Oct.My mom seems to be taking the move pretty well.Was thinking yesterday though of her decline since she has been with us.2 years in July.She used to do dishes,dress herself,make her bed,etc.Now she does none of the above. BUT,I am finally getting pd.We are near the closing of her property.That crap takes forever.The city is holding it up. I have a question.My mom takes a pill for sleep.Not very often.It's an anahystamine.(SP)Sometimes it doesn't work till the next day and she's sleeping all day then instead of that night.Has anyone experienced this?She takes it at bed time.Theres times she will sleep all day and even the next night,but not the night i gave it to her. Thank You,Barb
Tumbleweed - 03 Jan 2005 16:09 GMT >I haven't posted much lately but read every post. > Thought i would update a bit.We moved in Oct.My mom seems to be [quoted text clipped - 5 lines] > I have a question.My mom takes a pill for sleep.Not very > often.It's an anahystamine.(SP) antihistamine?
>Sometimes it doesn't work till the next day <snip> I would say that means it isn't working, and you need to try a different one
:-)
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Evelyn Ruut - 03 Jan 2005 17:55 GMT hi barb, i assume she is taking a benadryl. ida took that for a while too. we switched to a tylenol pm because we heard it was possibly beneficial. we never has the odd delayed effect you describe, but ida did sleep a lot in the day probably just the progression of the illness.
 Signature Regards, Evelyn
(to reply to me personally, remove 'sox")
>I haven't posted much lately but read every post. > Thought i would update a bit.We moved in Oct.My mom seems to be [quoted text clipped - 9 lines] > all day and even the next night,but not the night i gave it to her. > Thank You,Barb Rose - 24 Jan 2005 01:50 GMT S Kanary wrote:
>Yet, after all this, I look at what I've just typed and think "Ugh! That >all may be true, but I've never considered myself as 'depressed'"! After >all, I know concentration camp survivors that aren't this messed up. Major depression is a biological illness. It's not a personality flaw or a result of poor emotional coping skills. Stress is a major cause of depression, but it's also a major cause of some "physical" illnesses such as Crone's Disease and migraine headaches.
If you doubt your doctor's diagnosis you could get a second opinion. If the other doctor confirms the diagnosis I hope you will believe them and follow their treatment recommendations. Major depression is a condition that needs to be taken seriously and treated with great care. It can have multiple causes...physical, emotional, genetic, etc...and often requires multiple treatments such as medication, talk therapy, meditation, exercise, diet changes and lifestyle adjustments.
Grief is a normal reaction to having Alzheimers in the family, and depression is quite common among caregivers. Please take good care of yourself.
___ "The sea was angry that day my friends. Like an old man sending back soup at a deli." -- Seinfeld
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