Thanks for checking in, OP. I'm the DC nanny. I have worked with two sets of twins and I can say with surety that as hard as it is when they are little, it does get SO much easier soon.

Wishing you the best!

No words of advice, but just wanted to let you know that I'm thinking of you, OP.

Hugs.

You've gotten some great advice and support here OP. Just wanted to tell you I feel for you--it's hard to have a sick parent and also be the mother of young children. I wish you much strength and peace as you and your DH navigate this. You sound like compassionate, hard-working, kind people. Your kids and your mom are lucky to have you. *hugs*

Anonymous wrote:OP here - thank you all so much. It really did my heart good just to vent about it. I miss my husband now that he is working so much and feel so alone in all this sometimes.

You are so kind to offer help and I cannot tell you how much I appreciate the two nannies who offered to help watch my twins for me for free this weekend - your kindness will not be forgotten.

We are in South Carolina - a picturesque little town with very few services and a state government that offers even less. I am fighting on all fronts as it were to get my mother medicare and SS early as well as disability and my Dad's VA benefits. We'll be okay. We are truly the lucky ones as we both have good jobs and a home large enough for the kids and my Mom. As tired as I get I know there are thousands of other adult children struggling with these same issues surrounding Alzheimer's and related dementias without a quarter of the resources we have.

Bless you all. You have done my tired heart good!

Just to be sure that you're applying for disability under social security--I am close to the SS disability industry, and early-onset Alzheimer's is actually on the list of compassionate allowance impairments, which means an application for disability benefits would be fast-tracked. (See https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022385).

My grandfather had Alzheimer's. It is an atrocious condition, and my thoughts are with you.

I'm so, so sorry OP. My father has Alzheimers; my maternal grandmother had it as well so I figure I'm doubly cursed. Both of my grandmothers lived with us for about 1 year each when I was growing up, until their care became too much. I was older than your kids, but I had such incredible love and respect for my mother for the sacrifices she made. My mother was terrified of getting Alzheimers; in the end she died young of ovarian cancer and the only blessing of that is that she didn't have to see my father live with this disease.

Way back then, my mother fought like hell to find a good place for her own mother who was a widow of a veteran and had few assets. In the end my parents somehow got to a local congressman who helped find a Medicare (Medicaid? don't remember) bed for her in the nursing facility in town. I wonder if there is anything that your congresspeople can do to help expedite all the bureaucracy?

What about your church or synagogue - the ladies who ran the outreach program at our small town New England church would have mobilized a minor army to help in a situation like this, once they knew about it.

Fwiw we've relied on elder care agencies and lawyers to help with our dad. The state and local council/agency on the elderly can be a great resource if you haven't tried them yet. They will probably be familiar with the problem of record destruction - tearing up photos and other records of the present reality is a very common trait among Alzheimers patients.

Please talk to your friends and tell them what you wrote here. I lost my mother a lot earlier than most of my friends did, and I find I sometimes have to be blunt with them because the realities of a dead mother and a father with severe dementia are so far from their radar. But even if they don't step up to the plate to give you a hand or at least socialize with you and your kids, it's cathartic to get it off your chest.

All the best to you and your family.

OP here - thank you all so much. It really did my heart good just to vent about it. I miss my husband now that he is working so much and feel so alone in all this sometimes.

You are so kind to offer help and I cannot tell you how much I appreciate the two nannies who offered to help watch my twins for me for free this weekend - your kindness will not be forgotten.

We are in South Carolina - a picturesque little town with very few services and a state government that offers even less. I am fighting on all fronts as it were to get my mother medicare and SS early as well as disability and my Dad's VA benefits. We'll be okay. We are truly the lucky ones as we both have good jobs and a home large enough for the kids and my Mom. As tired as I get I know there are thousands of other adult children struggling with these same issues surrounding Alzheimer's and related dementias without a quarter of the resources we have.

Bless you all. You have done my tired heart good!

Anonymous wrote:

Anonymous wrote:OP, i feel for you. That sounds like a really tought situation. I am a nanny for twins and I'd be happy to donate 2-3 hours tomorrow to help out and play with your kids a bit. Post an email if you are interested.

That is so incredibly kind of you! However we don't live in DC or the surrounding area.

You are a truly wonderful person - I hope your employers appreciate you!

[b]

LA nanny here- I'm free for a few hours this weekend. Are you near me? I have twins experience as well.

OP -

I know you said you weren't in DC or the surrounding area, but Maryland is all I have experience with

I used the resources through this link many years ago when I was the only resource for my grandmother (long story short, I was in my mid 20s and basically the only resource for my gram. NOt really the same situation, but with money being tight and few of my own resources, the people I contacted through this site were really great and very kind. (just as a disclaimer, this was about 10 years ago, so if you have a different experience, I apologize!)


http://www.aplaceformom.com/alzheimers-care/maryland

It looks like they have other state resources, but I can't speak to any of them.

Maybe just call the 888 number to see what they have to say? It can't hurt!

Good luck! And hang in there - It was really hard for me and it was just me and my gram - I can't imagine adding kids, husband, career job, legit finances (not apartment rent and a credit card), etc.

lots of hugs.

I'm sorry you're struggling with this, OP!

Is it possible your past friends aren't so out of reach? Can you send an email or post on facebook something with specific needs? Like - need someone to mow my lawn or watch my mom for 2 hours or babysit the kids or bring dinner X date? It might sound silly, but a lot of people get anxious around exactly HOW to help someone, but do want to help in some way that you can actually use. If people can help you for a small chunk of time they may be more likely to offer.

While the PP could have said more tactfully or expanded a bit, she has a point. Getting the OP's mother a social worker will allow her to have access to programs at reduced cost or even free. We all pay taxes for services for people like the Op's mom, she should take advantage of what it available. It does not mean the mom has to move out- but it may mean the there are resources out there for the OP to tap- sop she and her DH are not hit with the financial load as well as the emotional load.



Thank you. We already have a social worker who has been helping us. There are very few resources for Alzheimer's and Dementia sufferers. And then there are the horrors - the state run facilities where these once vibrant and self-sufficient people walk around in soiled pants or are so drugged up they don't move which would be my mother's only option if not for us at this point. There is nothing like Alzheimer's Daycare or respite care in our state for Alzheimer's sufferers. Believe me, we are "tapping" every resource known to man at this point. We have also gotten help for the Alzheimer's Association. The programs and assistance you are talking about do not exist.

We went through something similar with my FIL and my mother is struggling with it now with my grandmother. I'm glad to hear you're working with an elder care attorney, that makes a big difference. There will come a point that you can't care for your mother in your house. One way to get her into a nursing home that takes Medicaid is to wait until she has to go to the hospital for some reason (stroke, fall, pneumonia, etc.) and then arrange to have her discharged to a nursing home. Your eldercare attorney should be able to assist but it helps have all your ducks in a row before she goes to the hospital.

Also, in my mom's home state, it's routine for Medicaid to reject your first application for Medicaid. My mom's eldercare attorney warned her of this. When the state rejected my 103 year old grandmother's request for Medicaid, I wrote a letter on behalf of my mother to her state representative (Medicaid is a state run program so you need to contact your state rep). That really smoothed the agency's second review of the application. Best of luck.

You need to apply for your mom to get Social Security Disability ASAP. If she gets it then she will need to enroll in Medicare. My father has early onset Alzheimer's (he's bedridden now at only 64) but a few years ago I told my mom to get all the paperwork filled out for SSD and he got it with 12mos. of back-pay of it in a lump sum (they would only got back 12mos. but he had been diagnosed in his mid-50's). There are some adult day centers who take Alzheimer's patients. They have trained staff and alarms on their doors. That might help you for during the week.

OP, I am thinking about you. I am a FTM with severe PPD and a mom who is only 68 with similar cognitive impairments. I livein VA and she and my Dad are in PA. She has not been diagnosed with Alzheimers yet (she has other health issues thathave caused the cognitive decline) but her own mom died at 72 and was in a home for 10 years prior to her death. This was in the 80's and we witnessed those terrible conditions that you spoke of. My grandfather had a nervous breakdown and was also hospitalized for the guilt he felt that he couldn't take care of her at home anymore as her disease advanced. It was horrible. My mom's biggest fear for the last 20 years is that she would suffer like my Nana did in a home like that. I am also an only child. I worry about the future - you are so on top of everything! You should be proud of yourself. Hang in there.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You are not legally responsible for your mom. Get her a social worker through APS so she can be cared for.

Wow - what is wrong with you?! OP is doing everything she can to give her mother a decent standard of care and going through all channels that any of us can think about.

I hope your children care more about you than you do your own mother.

While the PP could have said more tactfully or expanded a bit, she has a point. Getting the OP's mother a social worker will allow her to have access to programs at reduced cost or even free. We all pay taxes for services for people like the Op's mom, she should take advantage of what it available. It does not mean the mom has to move out- but it may mean the there are resources out there for the OP to tap- sop she and her DH are not hit with the financial load as well as the emotional load.

Thank you. We already have a social worker who has been helping us. There are very few resources for Alzheimer's and Dementia sufferers. And then there are the horrors - the state run facilities where these once vibrant and self-sufficient people walk around in soiled pants or are so drugged up they don't move which would be my mother's only option if not for us at this point. There is nothing like Alzheimer's Daycare or respite care in our state for Alzheimer's sufferers. Believe me, we are "tapping" every resource known to man at this point. We have also gotten help for the Alzheimer's Association. The programs and assistance you are talking about do not exist.

Where do you live?

Op, where do you live? People on this forum are from all over. Maybe someone knows of services in your area.

You are in a very difficult situation, OP. My grandmother has Alzheimer's (late onset) and I know how difficult it has been for my parents. Everyone thinks there are social safety nets for Alzheimer's and dementia sufferers under the age of 65 and there simply aren't any. And few resources for people over the age of 65.

Seth Rogan spoke before Congress this year with a committee of doctors and specialists on the devastation of Alzheimer's and the need for both a cure and treatment options - and ONE of our US Senators attended the hearing. ONE. As all of our parents reach the danger age on onset - it is something to think and vote about.