Hi, Chris -- would you be able to give us a city and state that the person will likely be living in? Meanwhile, a first step in finding a place to live would be to check out alz.org, the Alzheimer's Association. I think that website would be one to have lots of care-finding information.

Also, call the Area Agency on Aging in the region where your loved one lives. They can put you in touch with resources like Sr. Information and Assistance...I'm unsure if the person seeking the assistance (your loved one) has to be over 55 or not. They will have lists of resources for facilities and case managers and social workers, etc. A lot of options available will depend on the financial resources of the person needing help. There are both Memory Care facilities and Adult Family Homes in many areas that specialize in dementia. I recently helped a cousin with Lewy Body Dementia and found the most wonderful, lovely adult family home in the Seattle area for him. They only take dementia residents, their small lovely homes are secure, the residents have private rooms, wonderful home cooked food, etc. But the cost was over $7,000 a month several years ago, none of it covered by any type of insurance or Medicare. If your loved one hasn't yet, be sure to apply for Social Security Disability - if they've worked for over 10 years and paid into it, it will provide income until retirement age.

This is a difficult road for all concerned; I am sorry.

folkvictorian - Thanks for the reply.

She is located in the Washington DC area and the hope is to keep her in that area so her young son will be able to visit. Her other siblings are spread out in the New England area. We are in the mid west.

My husband has dived into the alz.org site and is getting a list together. We will go through the list and website information when he gets home from work and tomorrow morning. We are unclear when she will be released from the hospital and need to figure out the procedure (both medical and legal) before that happens.

This will be a big learning experience for us. Thanks

Chris

Olychick - had a response but it didn't go through so I will try again.

Another part of our "mission" is to figure out her financial situation. She works for the federal government so I don't believe that she has paid into Social Security. She has not been very cooperative and doesn't believe she has a problem and is unable to understand the situation - and quite abusive to boot. So the information is not coming from her freely.

It gives us hope to know that you had found a wonderful facility for your cousin. Aside from the diagnosis, we are just so hopeful to get her into a facility that will keep her comfortable. Our imaginations just ran wild for a bit thinking about what is out there in the long term care facilities - we both worked in nursing homes in our youth.

Chris

Will someone be appointed legal guardian for her? The reason I ask is that it sounds as if she does not (or is not able to) recognize the problem. In that case, what is the plan for moving her into a residential facility?

I am so sorry that she is in this situation, sorrier still for her child. She is lucky to have you to advocate for her.

Les mentioned a legal guardian. If she is uncooperative, and her doctor would agree she is already incompetent, the court could appoint someone as her legal guardian, who could then get at her finances and make decisions about placement, etc. But if she is still working,or would not yet be considered incompetent, then perhaps someone can persuade her to sign a Durable Power of Attorney (by suggesting someone would need to have one to help should she get sick and her child needs something she cannot provide, etc.) A DPOA would remain in effect as her health deteriorates and then a doctor could state that she is no longer competent and then the DPOA acts much in the same way as a guardianship but without intervention of the court. A regular POA becomes invalid if the granter becomes incompetent.

I was able to do all the business I needed to with a DPOA for my cousin, as well as my aunt and my own mother; lots of experience here :-(

I cannot recommend Area Agency on Aging too much. They really have great info about all this.

Here is a link that might be useful: some dementia options in DC

It sounds like she is early on in the disease. What can you do to keep her independent as long as possible, etc.? I'm thinking you should focus on the least restrictive environment, for her sake, given her attitude. Maybe for now, an ID bracelet, etc. Does she know what she has been diagnosed with? A frank conversation about her illness is in order. STAT. Her wishes should be honored as best as they can be.

She must have some retirement/disability benefits available through her work... I'd look into hiring someone to apply for permanent disability. It takes time to get the wheels in motion so starting ASAP is important.

How close is this person to you? Keeping her close to her son may not be in either of their best interest, depending on his age, ability and willingness to take this on. Or it simply may not be feasible.

I am so sorry. Taking care of my family member was heartbreaking and thankless with regard to the rest of the family. Whoever takes her on should love her lots and be able to advocate for her wishes.

If she has already been diagnosed with a form of dementia, I don't believe legally she can sign for a DPOA. I would think you would have to go to court and apply for guardianship. With my grandmother we have both DPOA and POA (she is considered incompetent at this point - cannot make her own decisions), and BOTH are still in effect. I am the POA and my sister is the DPOA which has worked out WONDERFULLY for us - I handle all legal/financial matters (she still owns property, has investments, etc.) and my sister handles medical decisions, etc. We both had to sign certain paperwork when we admitted my grandmother to the facility.

Sorry that my info will not help you since we are in Tennessee, but we are so pleased with the facility for my grandmother, so I am hopeful that you will find something similar. My grandmother is able to be pretty independent (although she really does not with to be). There are clients there who are allowed to have their pet with them - something that I think is just fantastic. They have a very nice outside area and are allowed in/out of the "campus" with no restrictions. Family/friends are allowed at any hour, wonderful meals, medical care, exercise program, hairdresser, etc., etc. etc. They have all kinds of outings, even a weekly run to Walmart!

There ARE good places out there and I hope you find one for your loved one. Please let us know.

tina

A friend of mine moved into assisted living in the DC area about a year ago. I took several trips with her to see facilities. Most of them have various levels of living starting with independent living in an apartment and then a progression to areas of the facility with greater care, including the section for Alzheimer's.

You need to figure out what her financial situation is and how much money will be available. As a federal government employee, she is under one of two retirement systems, FERS or CSRS. If she is age 50, she is likely under the newer of the two systems, FERS. For starters, you need to know which system she is under.

I found the website linked below which is written by an attorney who specializes in obtaining disability retirement for Federal employees. You might also want to explore the Office of Personnel Management website regarding retiring on disability:
http://www.opm.gov/retire/pre/index.asp

Fortunately, there are many options for Alzheimer's care in the greater D.C. area as compared to other areas of the country. The place my friend chose was Goodwin House. It has campuses in Alexandria and Bailey's Crossroads, VA. On the Maryland side, I visited Collington Episcopal Life Care Community in Mitchellville, Maryland.

In my opinion, though, you can't do much of anything for her until someone has a power of attorney. Someone at the facility where she is right now may be able to give advice on where to start.

Here is a link that might be useful: Federal disability info

Northwest of the Washington Beltway, you might want to look at Asbury Methodist Village. I didn't visit this place, but I hear good things about it. By the way, my friend has a medical condition, not Alzheimer's, so my focus was not on that part of the communities I visited.

Here is a link that might be useful: Asbury Methodist Village

Copper Ridge is a very well-regarded treatment /care center for Alzheimer's in the Baltimore/Washington area (Sykesville). It's not like a nursing home. Affiliated with Johns Hopkins Hospital, it's supposedly THE place to go as far as treatment and research. It's run by Episcopal Ministries for the Aging, which runs expensive retirement communities for the well-heeled, so it would not be cheap, but they may be able to work with you.

Maureen

Here is a link that might be useful: Copper Ridge

Thank you all so much for your input and support.

The two biggest issues we are now addressing are those posed by some of you:
Guardianship and Finances. As with any family and situation like this, you can imagine that there is much more going on than what I am able to express here. Families are complicated and this family IS complicated.

The facility that she is in now has finally come to acknowledge that they can not just release her - they have said she is unable to make decisions regarding her medical care. Now we need to get two doctors to sign off that she is incompetent before proceeding with the guardianship.

Determining who will be the guardian is quite tricky at this point because she is involved in a few legal issues that play into the short and long term affect of the decision. That will be hashed out hopefully in the next few days. If she is deemed incompetent the question arises as to whether she can proceed forward in her legal battles - most, probably initiated by her severe lack of decision making abilities which is a symptom of the disease - and whether it is in her best interest to do so. She is the one who initiated some of the legal issues. Others are the result of her behavior and forgetfulness. Like I said...it's complicated.

Once some of these legal issues and guardianship is determined, than we can get more of the financial picture in focus. Thank you Graywings for linking the government retirement and the federal disability links. We believe she is under the older system; but as you said it needs to be confirmed as she did have the ability to switch over to the newer one at some point.

We are learning more about her diagnosis which was originally known as Pick's disease. The symptoms fall into two patterns and her's is in the behavioral pattern which shows as impulsive, inappropriate social behavior, lack of social tact, loss of insight into their own behavior or others, repetitive or compulsive behavior to name a few. The other pattern type involves the language skills in understanding speech and such - she is not so much affected by this pattern.

It is believed that the disease starts in the 30's and 40's which makes us now think that what we thought was a possible personality disorder had actually been early signs of this Alzheimer's. There has been a history of unusual behavior (as observed by outsiders but denied in general by most of the immediate family).

She has definitely been told repeatedly by numerous people that she has Alzheimer's disease but is not able to make the connection as to the consequences. She will insist that the doctors are crazy and argue about every little thing, whether it pertains to the discussion or not. And then she will quite nonchalantly say "I have Alzheimer's, what's the big deal let me out and go back to work". Hopefully when they find the correct level of medication for her, she will be able to voice her desires. We feel strongly that her young teen son have access to her if he desires as the past few years have been turbulent for all concerned.

Thank you again for all your info, recommendations on facilities, and especially the support. I will keep you posted. It will not be an easy road but I will look at this as a growth experience. The thing that has hit home hard is, without parents around any longer - WE are the adults we used to turn to for advice!

With much appreciation, Chris

Oh, poor thing. I was thinking a young son in his twenties. This disease is so sad. I wish you all the luck in the world. Hopefully medication will be of help. Does she actually have a job to return to? If so, this must be especially tricky.

Boy do I understand complicated family dynamics. My sisters wanted me to totally care for Uncle and take full legal responsibility, while they made *all* the decisions. (((Hugs!)))

If she is in a hospital now, you're lucky in a way. It's much easier to get someone into an assisted living facility from a hospital than from their home.
When you look for a facility, be sure to check their report card. The facility must have it displayed. Look for no deficiencies on the report card.
I also suggest that family members get advice from an attorney who specializes in elder care issues.

((((cth))))

Even though she is a federal employee, she could be eligible for Social Security. If she joined the government fairly recently (20 years or so ago), she is probably in the SS program. My husband was a 43-year employee when he retired last July, so he was not enrolled in SS, but most employees now are (at one point, there was a choice of which program you wanted, but a friend who began a little over 20 years ago did not have any choice. He had SS automatically and since she is so young, I would bet she is under the SS system-unless she is an elected official). I would check and definitely look into SS disability coverage. Also, I don't know the details, but I wonder if the new health care law has kicked in and she could get long-term care insurance despite having a pre-existing condition.

I am so sorry for your family and especially her son. This is not ever an easy thing.

If she began with the Federal Government in 1988 or later, she would be in the SS program. The law was passed under Reagan in 1984 and the change went into effect in 1988.

The FERS program (the "new" retirement system) came into existence in 1984 if I recall correctly.

Cyn427, I think you are thinking of the introduction of the Thrift Savings Plan for people under the "old" CSRS system. That was started in 1988.

No worries, Graywings. You could be right, but my DH (not under FERS) initially said 1984 and another friend who was under FERS told me as we watched the playoff games yesterday that although the law was signed in 1984, the program kicked in in 1988. He (the friend) doesn't usually make mistakes on stuff like this and I did ask specifically about the FERS program. He could easily be mistaken-we are getting old-lol. Nonetheless, if it was '84, then she would have had to have been a Federal employee even longer in order to NOT receive SS. I just thought they shouldn't discount her eligibility for SS simply because she was a Federal employee. :)