My mom has been diagnosed with Alzheimers........

[doodadem]

We just found out about it, and that only because my sister-in-law went to her doctor's appointment with her. She's been covering it really well. Her memory has not been as good the past several years because she had a bad reaction to chemo when she underwent cancer treatment. But when she suddenly started getting slurry and not making sense at times, my brother and SIL hustled her on into the doctor. Come to find out, she was told about this months ago, and just sloughed it off. Certainly never told us.

Doesn't a doctor have an obligation to inform family about things like this? It's pretty upsetting, especially when the doctor is nearly accusing you of neglect! I'm clear across country from them, but both my brother and I try to stay on top of our parents' health issues, and believe me, we've dealt with a lot.

We've been after them the past several months to sell their place, and get into something more manageable. They've been extremely resistant. Now there's no choice. Doctor is saying they need to go into assisted living immediately.

I spent all of today on the phone with folks at Medicaid, and looking for info on assisted living places. Trying to determine how we're going to pay for this--hopefully between Medicaid, Medicare, and VA for my dad, we can manage. If Medicaid is just going to immediately take their property, there's no sense in even putting it on the market now. It doesn't sound like they'll even leave them a little bit to live on. All they have is Social Security otherwise. I'd really love for all of these assholes that badmouth universal healthcare to be put in this kind of situation up close and personal.

Anybody else out there dealt with all this? Any info? Any words of wisdom/advice? I think I found a place, close to my brother, where they would have a one bedroom apartment, and they would allow them to keep their little dog and cat. That's really important to them.

[Liberal_in_LA]

1. Get her on those new alzheimer - memory drugs. The right combination of drugs work!

My mom's on them.. helping with the memory. She'll never be 100% but so much improved.

[emilyg]

2. My Dad did not tolerate them well.

Worth a try though.

[Liberal_in_LA]

9. my mom didn't at first. It took lots of visits to the doctor to get the right drug/dose

earlier combinations made her sick, depressed, etc...

[knowbody0]

3. My mother passed eight years ago

she was diagnosed 10 years prior. It was so very sad. Watch "Away from Her", try to make the most of her lucid days. It was the most difficult thing in my life. good luck to you and your brothers.

[jwirr]

4. Things differ from state to state but usually the home is not taken if

the other spouse needs it yet. Also if a child, such as a disabled son or daughter, still needs it. They try not to force other family members out of their homes if they can help it.

[doodadem]

8. They come as a set.

My dad was paralyzed on the right side of his body a few years ago by a stroke. So they really need to be in assisted living together. My poor brother has been running himself ragged taking care of them the past few years because they refused to move. He lives 50 miles away from them.

I'd bring them out here in a heartbeat if we didn't have a one bedroom little farmhouse, and my husband lost his job. I'd love to have them. But I don't know if that would be the best thing for them either, with the issues they have....we're more out in the middle of nowhere than they are now.

My sister lost her house to Medicaid before she died. It's going to be really hard on my folks, they've lived there for nearly 40 years. It's not much, but its home. I completely understand that. And my dad is who I inherited my privacy freak gene from....he's going to hate going into an apartment. He really hated being in a nursing home after his stroke.

[tsuki]

20. Is your dad a vet of WWII, Korea, or Vietnam? nt

[Liberty Belle]

42. Have you checked into therapy dogs for the disabled? they're free!

www.cci.org

Also check out this video: http://www.youtube.com/watch?v=V6PKBgtC87s

Maybe a therapy dog that retrieves things, opens doors, etc., could help your dad.

[doodadem]

10. They come as a set.

My dad was paralyzed on the right side of his body a few years ago by a stroke. So they really need to be in assisted living together. My poor brother has been running himself ragged taking care of them the past few years because they refused to move. He lives 50 miles away from them.

I'd bring them out here in a heartbeat if we didn't have a one bedroom little farmhouse, and my husband lost his job. I'd love to have them. But I don't know if that would be the best thing for them either, with the issues they have....we're more out in the middle of nowhere than they are now.

My sister lost her house to Medicaid before she died. It's going to be really hard on my folks, they've lived there for nearly 40 years. It's not much, but its home. I completely understand that. And my dad is who I inherited my privacy freak gene from....he's going to hate going into an apartment. He really hated being in a nursing home after his stroke.

BUT......the property is in my mom's name and my brother's name. So maybe they can only get half the value?

[specimenfred1984]

5. I know someone who works for the Alzheimers Assn

I'll ask her what to do when someone is 1st diagnosed. I can barely believe the glib comments about "just take the new drugs", as if everyone can just afford anything and there isn't any health care crisis in the U.S.. Dayammmmmm...

Of course, I won't be able to find out in 5 seconds worth of "twittering" so I guess anything I could find out would be too late anyway. But, that answers your question, contact the Alzheimers Assn, they've got a lot of good people working for them.

[alfredo]

6. It took down my mom. Remember, never take anything she says personal.

My mom forgot us, but she though I was her brother. She didn't know my sister from Adam. That really hurt my sister because she's been the main caregiver.

[Hestia]

7. I work for a Geriatric clinic, and the one thing that seems to really help the

caregivers and family members is support groups. Call your local Alzheimer's organization and they should be able to find one for you. All the patients children says it does them a tremendous amount of good, just having someone there who understands.

I thought Medicaid counted any funds for the last 5 years? Is that not true anymore? Get your parents state Medicare/Medicaid Guide - each state is different and has different guidelines.

[ohheckyeah]

11. Marijuana

The Alzheimer's drugs Aricept and Cognex work by blocking acetylcholinesterase. When tested at double the concentration of THC, Aricept blocked plaque formation only 22% as well as THC, and Cognex blocked plaque formation only 7% as well as THC.

http://www.webmd.com/alzheimers/news/20061006/marijuana-may-slow-alzheimers

And I'm sorry about your mother. Alzheimer's is not easy on the family.

[C......N......C]

12. Watched my mother go from a coherent active focused lady

to a babbling wreck carrying around a baby doll as her own child over the last three years.

[Liberal_in_LA]

14. My mom went downhill about 3 years ago also, it ain't fun.

;(

[Cary]

13. If your mother has any assets you need some advice.

Medicaid will end up paying for the assisted living but it's bare bones. You need to do some Medicaid planning. Your dad can keep the house as a community spouse plus about $90,000. There are some other things you can do.

Find a good lawyer who understands Medicaid.

[OnyxCollie]

15. Sounds like my mom.

She was recently treated for colon cancer and freaked out while in the hospital. My dad, forced now to pay more attention to her, told me that he suspects her memory is going.

[Maru Kitteh]

21. Don't take his word for it.

What I pick up from what you've posted, is that your father was not previously attentive. Your mother was going through a very stressful and frightening time, confronting death, and coping with the treatments to fight her cancer. Do you think it's at least possible if you had to have a camera shoved up your ass, knowing that you wouldn't remember the procedure, and when you came out of it they confirmed your worst fears, and then you had to poison every system and cell in your body in a bid to survive.......might you hope your life companion would be there?......do you think she might have been disappointed by the coldness of a man who had to be forced to pay attention to her, per your own words?

It's NOT disloyalty. You don't have to not love him or even be angry. Just please, don't take his word for it. Take care of her.

[doodadem]

25. Not at all

See my other post about my dad having a stroke. His right arm and leg are paralyzed, speech is iffy, and he's nearly totally deaf (and refuses to wear a hearing aid). A few years later, my mom was diagnosed with liver and intestinal cancer, which is currently in remission thanks to some new treatment. So even though she had some other problems, she's been kind of holding down the fort, so to speak, fully capable of driving to doctor's appointments, going shopping, etc.

She suddenly took a turn for the worse, is why my brother/SIL took her to the doctor themselves. She was on a lot of meds, and the doctor took her off about half of them. Will add back one at a time and see what happens. She also said, take the keys to her car immediately. My mom, and rather strong willed lady, is PISSED AS HELL! So my brother and I have spent a good bit of today just calming her down.

The property has been too much for them for some time now, which is why we've been talking hard and heavy already about getting to a place without acreage, in town. Now, there's no choice about it--they will have to move to a facility down close to my brother.

To answer someone else's question, my dad is a WWII veteran. He is 89 year old, my mom is 77.

Thanks for the kind words and help.......you guys are the best.

[Warpy]

16. Depending on how bad it is, you might get away with some more

time for them at home if your dad is there with her and able to participate. Home health aides can be a big help in providing respite care for him so he can get out and do errands a few times a week. It might buy you enough time to wait for an opening at the right assisted living center.

Pets and some of their own furnishings would help them to acclimate to an assisted living area, which would really be ideal.

Just be aware that a nursing home placement will eventually be necessary for your mom and listen to the assisted living center people to determine when that is.

That doctor was totally out of line, but you know that. If your dad didn't let you in on the diagnosis, it's because he wanted to stay independent as long as possible.

The longer you can maintain their independence, the better. Assisted living is the way to do that.

[KittyWampus]

34. My Town has a day program for early stage Alzheimer's patients. 5 days a week

a van shows up and brings participants to facility where they can get hair washed, play memory games, do arts and crafts, go through daily news, watch movies.

They are given meals and then brought home.

This is different than the Senior Citizen Center which is for fully independent seniors.

There may be such programs nearby.

[Maru Kitteh]

17. So many things I don't know where to start with this. PLEASE READ THIS POST

To cover my ass, this is not actual medical advice and individuals should consult their physician(s).

Please don't take one doctor's advice on this matter, it's WAY to f'ing important. There are so many factors that are important here. How many medications is your mother on? Did her physician try dropping any and/or all of them and starting from the ground up? Was an MRI done? I hope you'll PM me, but if you don't, I REALLY HOPE that you take your mom to an Internist AND a Neurologist before you continue with any long-term plans.

Best wishes and giant hugs for helping your mom as best you can! PM me anytime.

[williesgirl]

18. My Mom died 4 years ago after fighting it for 6 years. It's the saddest, hardest disease not only

on the patient, but on family and close friends. I feel for your Dad if he still has all his faculties. You need to nursing/asst'd living home to be very close to either you or your brother. My sister was the one living in town where Mom was and she was there at least 2 hrs daily and we still had to fight to get Mom the care she needed and deserved. She too was a Medicaid patient. She didn't own a home since I paid her rent for 12 yrs on a really nice apartment after my Dad died and their SS income was cut in half. But when she finally had to go to the nursing home to keep her safe, Medicaid even forced us to take her meager insurance policy (I think it was for $6,000) and sign it over to the funeral home before they'd take her.

You have to really watch the level of care at the home. At least you Dad is there to protect her. My Mom was injured by another patient, ended up hospitalized for awhile. When she returned there, they didn't move her often enough and she developed bed sores that became infected. And that was with my sister there daily and the rest of hit traveling in on weekends from various parts of the country. She ended back in the hospital after that where they fought to clear up the infection and couldn't. It took her 3 weeks to finally pass and it wasn't anything you'd want to live thru. All 4 of us siblings were there around the clock for a month insisting on better care even at the hospital. I'm sure they wished we'd just go home. But no way was Mom going to endure that when she couldn't even talk to them, didn't know us, was frightened etc.

To give you some clue as to how traumatized I was, I began taking Aricept and Namenda right after Mom died. My daughter is disabled and there's no way I'll put her in a position of having to cope with what we did and what Mom went through. My husband passed away 9 years ago. To be honest with you, if I ever receive a diagnosis of that or dementia, I'll just end it right there. I don't believe in suicide and think it's awful on those who're left, but no way would I put them thru that again.

We simply must find a cure for this horrible disease. End these fucking wars and put the money where it will help, not kill.

My heart goes out to all of you.

[rufus dog]

19. From a financial perspective

Check with your local Alzheimers Association. We were able to get my mother into a nice facility and paid the monthly fees out of the proceeds of the sale of her home. After that money went they offered a deep monthly discount at the same facility which lightened the financial burden tremendously.

[pengillian101]

22. I'm sorry that all I have to offer is a hug.

It's heartbreaking when our parents get old. :hug:

(An afterthought - you mentioned your Dad and the VA.) Your Dad just may have a Veterans Service Officer who could maybe be helpful with housing options. Your brother might already knows who he is.

Otherwise look here.

https://iris.va.gov/scripts/iris.cfg/php.exe/enduser/std_adp.php?p_faqid=1208

:hug:

[Feron]

23. I'm very sorry.

My grandmother has dementia and it is an absolutely heartbreaking disease. And don't let that doctor make anyone feel bad. My grandmother was great at hiding her disease until it progressed to the point where she couldn't hide it anymore. From what I've read, that's very common.

If you can, get a copy of the book The 36 Hour Day. It helped me understand what my grandmother was going through.

One thing to keep in mind is that a dementia/ Alzheimers patient usually declines a bit after a move. If you think of the disease as a staircase going down, usually after a move the patient will take one of two steps down. So if she seems to get a little worse after the move, don't panic or feel guilty. Keeping her in one place won't stave off the disease and you do what you have to so that they get the best care possible.

As for drugs, they did help my grandmother at first. Unfortunately now she is at the point where they no longer help her. So mileage varies.

I wish you and your family all the best.

[Raine]

24. I don't have advice ... can only give

you a hug :hug:. My father died last year after a three year struggle with dementia (his caused by a stroke not Alzheimer's). I took care of him 24/7 during that time, it was the hardest thing I've ever done but I still miss him and the big smile he always gave me.

[JohnnyLib2]

26. I have a younger sibling with Alzheimer's some distance away.

We've also have found that a knowledgeable attorney and the local Alzheimer Assoc. office helped make sense of all the Medicaid issues, financial planning, and finding resources. It sounds like finding an asst. living facility is a giant step; good for you.
The Alz. Assoc. caseworker we work with was able to answer many questions and provide a lot of calm support. Their online site also has info on many points (happens to be in Dayton, OHIO).

We've also learned that everyone in the family reacts differently, even years later. Outside support has been terrifically important, especially when one level of care needs to be replaced.

:hug:

[KharmaTrain]

27. Now's The Time To Prepare Yourself...

My deepest sympathies. My mother suffered from Altzheimers for her last 4 years and I wish you the best of strength...it is devestating to watch a loved one become a prisoner in their own body.

My biggest suggestion (especially regarding their house), is to meet with an Estate attorney ASAP. If your parents haven't drawn up a will, get something in writing NOW. Also be sure to specify who is in charge of their care and has the power of attorney (this requires the doctors to tell you all that's going on) so that when tough decisions are to be made, you're both educated and ready. You should be able to place their home in a trust that protects it from being taken.

Last, but not least...meet with other Altzheiemr families or a support group. Don't try to hold all you feel inside. Another great source of support and comfort are hospices.

Again...here's wishing your parents the best in this difficult situation and for you to have strength...do all that you can for them so that down the road you can feel you did all you could.

[izzybeans]

28. The AA isthe place to start.

Medicare won't cover a lot of the expenses they will face in Assisted Living.

http://www.alz.org/living_with_alzheimers_financial_matters.asp

My best advice is to find them something that retains as much of their home environment as possible. Our memories are embedded and tied up with our surroundings. For those living with Alzheimer's preserving "the familiar" is important. IMO.

Cases like this highlight why health care reform has to include Long-term care reform. btw.

[Bluenorthwest]

29. My Mom as well

It is very difficult. We were lucky in finding an excellent place for her, a facility dedicated to Alzheimer's patients.
PM any time. Mom's about 5 years in, so many changes have occured since day one. If ever there is a question...feel free.
And best of luck to you and your parents and family.

[C......N......C]

30. How your mother is diagnosed has a lot to do with financial aid.

I will research and tell you what we had to do.

[C......N......C]

32. The diagnosis has to state Alzheimers and to what degree she

is able to function on her own.

[Laura PourMeADrink]

31. Doodem

I am sorry about your mom. My dad has had memory problems for 13 years. But we talked to his doctor at the onset.
It was his belief that you don't really want to know specifically if the person has Alzheimers or not. I actually
agreed with this - since it has a doomed connotation. A diagnosis can be totally demoralizing. I do think though that
your mom's doctor should have discussed this with you. Did he/she put her on meds?

What I am getting at is that I don't believe they truly have perfected their diagnostic techniques. My dad, for
the last 3 years has not gotten any worse. Making us think he has some other form of dementia that is not fatal. He is on the
Alzheimers meds. But, after 13 years he can still drive to the store and to the barber by himself.

Of course everyone is different - but maybe there is hope that she really doesn't have Alzheimers?

[bdamomma]

33. Alzheimers is such a dreadful disease, my mom passed away

from it, it affects both caretakers and family members, may you get all the support you need. :hug:

[Are_grits_groceries]

35. Here is an article you may want to check out.

Enbrel May Help Treat Alzheimer's
Rheumatoid Arthritis Drug May Prompt Rapid Improvement in Alzheimer's Disease Symptoms

http://www.webmd.com/alzheimers/news/20080721/enbrel-may-help-treat-alzheimers

Sorry about your mother!

[NC_Nurse]

36. My mom too. We have moved in with my folks to help out. It was a hard

choice, but driving back and forth every other weekend to give my dad a break got to be too much (we were 6 hours away).

My dad did not want to leave his home and was trying to do everything himself and I could see the stress taking a toll on him.
She's on a bunch of meds which, frankly, I haven't noticed helping all that much. She has continued to go downhill over the last 5 years and is
at the point where she cannot be alone, and must be assisted with even the most basic life skills.

I recommend that you get in touch with the Alzheimer's Assoc. in her area and they can help connect you with resources in the community.

I'm sorry to hear about your mom. There's no perfect way to cope. Sounds like your family is pulling it together pretty quickly, don't let what the doc said
make you feel bad. It's hard to know what to do when this disease first appears...it can be subtle and many try to hide their symptoms from others. Good luck
with everything. :hug:

[applegrove]

37. My grandfather had it. Watch out that she is not abusing whoever she is living

with. All sorts of things disappear randomly and you don't know from one day to the next what they will have forgotten. So sorry you are going through this. It is tough.

[Sheltiemama]

38. I'm so sorry.

My grandfather and aunt had Alzheimer's.

[Hannah Bell]

39. get a second opinion before you do anything.

[sad sally]

40. Statistics say there are currently over 4 million Americans with Alzheimer's

When my Mom was diagnosed in 1997, supposedly it was 2 million.

Be prepared for an unbelievable range of emotions, but as Kharma Train advised, get powers of attorney, wills, health directives and who in the family will/can do what talked about and finalized as early as possible. That doesn't mean things can't/won't change, but sure makes some parts easier. And don't expect that you or any other family member or caregiver can do it all.

My heart goes out to you...it's not the way anybody would choose to die. It was only several years after my Mom was finally free from this ugly miserable disease that I could remember her like she really was. Now, my father-in-law is in the last stages.

[Liberty Belle]

41. Some areas have day-care for Alzheimer's patients.

Check with a local seniors center or community center to see if this is an option.

What sort of shape is your Dad in? How many other friends and family members can help?

[quiller4]

43. Don't rush them into assisted living based upon one doc visit

In-home care can be an alternative. A medical social worker is often the best person to make that assessment and it is usually done in the patient's home so the social worker can observe attempts to perform some real daily living tasks.

My mother-in-law had Alzheimer's. Although she eventually wound up in the secured Alzheimer's wing of a nursing home, we were able to extend the time she lived at her own apartment by working with the Department of Social and Health Services. The state welfare agency sent a medical social worker to the apartment to conduct an assessment. The results of that assessment qualified my mother-in-law for state funded chore services. The social worker also told us many things we could do to make her stay in the apartment safer. Those things ranged from taking up all throw rug to obtaining a large button phone, programming in family phone numbers and labeling the buttons with the names so that to call us she didn't have to remember a number, she just had to push the "Jim" button. We purchased a pill box with the days of the week and I set up her weekly pills every Sunday. With a chore worker visiting four days a week and family dropping in on the other three, she was able to live independently for an additional year. When she eventually had to move to a care facility, she paid a portion of her bill from her SS/SSI and Medicare/Medicaid paid the balance.

I would advise you to involve your mother in the choice of the facility. My mother-in-law wanted to stay in her own apartment as long as possible but before she really needed a greater level of care, she and I toured most of the Alzheimer's care facilities in the community. She chose the facility she eventually moved into. The place she chose would not have been my first choice. I preferred some of the newer, brighter facilities. The place she chose was older. The rooms were larger and she thought it felt "homey". It also had a resident golden retriever.

Several medications are now quite effective at slowing the progress of the disease but there is still no cure. The disease takes a huge toll not just on the individual with the disease but on the rest of the family, too. I highly recommend finding a support group for family members.