New to the board-mom of 2 little ones w/ dementia mom living with us now

CamandHarpersMom

Hi everyone,

I'm a 46 year old mom of a 1 1/2 year old and a 4 year old. My husband (who is 52) and I have been married almost 5 years, been in our home 3 years. I say this because we started our family late in life and are smack in the middle of enjoying our young family. My mother has Dementia (diagnosed last February) and my husband and I just moved her into our home about 3 months ago. She lived by herself and stopped cooking for herself and was not taking her medication consistently. She refused to come to us for awhile, but in September I started a new job working from home, so that got her to move in. It's definitely taking some getting used to, mainly for me. My husband is great and patient, me not so much. I am her POA and I put her house up for sale and recently got a buyer. 

If I am going to be honest, I am grateful that she is here and I no longer have to worry about her in the house by herself. BUT, I have had more personal crying sessions in the bathroom then I care to admit to. Basically because as much as I am happy she is here....I sometimes feel like all the fun and adventure of having a young family has gone out the window. Sometimes she's good with the kids and sometimes I can tell she gets aggravated by them due to their activeness and noise level, which I get...she's 82 with dementia, she's not used to being around the kids. But the protective mommy in me that comes before anything else, does get pissed off when starts telling them "don't do..." "stop that..." "put that down" "pick that up". They don't know her problem and aren't doing anything bad when she says stuff like that to them, so they get confused. I then tell her she can go to her room and watch tv. At some point we plan on making a separate area in our home for her because right now she is in the guest room which is going to be the babies room when she comes out of her crib. I tell myself maybe when she has a separate area, it will be better and I won't fell like she's taken over our home. She monopolizes the main tv with the TCM channel on all day but when the kids come home from school, I turn it off so that they can watch their little shows.

Anyway, so many questions are floating around in my head:

1-is there a proper way to respond when she says "i'm gonna go home today" or "can you take me home?"...right now i say "you are home" and change the topic by offering her a snack because food is her thing! 

2-until I speak with our attorney i have questions about the money that will come from the sale of her house. Where do I put it? in my account since i'm POA? 

3-do i change her pension and ssa deposit accounts in case down the road we have to apply for Medicaid for her, in case there is need to place her somewhere.

4-everyone tells me that i definitely need to look into having some kind of help come in with her because my 2 little one's is enough, now I have a third that's 82 with dementia. Where would I find that help? how would I pay for it?

The questions in my head give me a headache. LOL

Hence why I joined and came on here in hopes that some or all of you can educate me, calm my nerves, point me in good directions, anything.

thanks in advance!

Emily 123

Hi, 

I found this helpful:      http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

I also recommend the Teepa Snow videos on You tube https://www.youtube.com/embed/videoseries?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

As her POA you'll need to keep her funds separate from yours.   As busy as you are, a CELA (Certified elder care lawyer) might be a good person to get in touch with, as they can help you with your financial questions.   You can read about trusts and find a CELA here: https://www.elderlawanswers.com/kinds-of-trusts-12007

For the going home question-you are correct to avoid and divert. She wants that feeling of security from being in a place she knows, and she wants to feel intact again.

I'm not sure how you're doing it with a young family and a job + the caregiving.  As long as you can make it work I'd say more power to you.  

terei

Number 1, if you have not seen a Certified Elder care attorney, you need to do that NOW.  Your mother’s house should not be sold until you have legal advice + a plan for your mother’s future. 

I hate to have to say this, but your situation with two small children + your mother in your home is not sustainable long term.  Your mother will deteriorate + the stress on you will increase.  It is clear (at least to me) that your mother, if at all possible, should be in memory care + your children be your main concern.

Try to do a lot of research + reading about what is likely to occur as your mother demands more + more of your attention + disrupts the normal functioning of your family. to your breaking point.  

I’m sure you will have to come to this conclusion on your own, but please do not wait until a crisis before you start looking at a appropriate facilities that will be a plan B for your current expectation that mom will be in your home long term.  I am sorry this is happening to you + your family.  I know it is very hard.

Emily 123

Hi,

Why not go to a CELA (certified eldercare lawyer) who can assist you with a plan for mom?  Do be meticulous in keeping her funds separate from yours.  Also, banks sometimes have their own POA forms they like filled out, so do ask.

https://www.elderlawanswers.com/elder-law-attorneys

Consider if you've got too much on your plate with two little ones, a job, and your mom--her needs will increase over time. It may not be an ideal situation with the children around.  If you wanted to move her into assisted living for the socialization and activities, it's better to do so while she's still able to acclimate. There are some really nice places out there, some specialising in dementia care. You would want to look for ones with memory care and trained staff so as not to move your mom as she progresses. Lots of threads here on what to look for.   If you do keep her at home, look to see if  maybe there's elder daycare in the area she can participate in.  If you have aides come in those would be paid for from her funds.

You are right to agree and divert her when she says she wants to go home.  She misses the security and the comfort she used to have before the dementia started removing all her life's reference points.  

This really helped me understand the changes I saw in my mom:  http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Good luck!

pluviophile

Hi and sorry about your mom.  With two small kids and your mom you do have a lot on your plate.

2-until I speak with our attorney i have questions about the money that will come from the sale of her house. Where do I put it? in my account since i'm POA? 

3-do i change her pension and ssa deposit accounts in case down the road we have to apply for Medicaid for her, in case there is need to place her somewhere.

For those two things I wouldn't do anything without consulting an attorney first.    I'm someone who has saved myself a lot of money and headaches because I got legal advice when I  needed it.  From what I've read, Medicaid requirements are different in different states.

You might find this info. helpful:  https://www.medicaidplanningassistance.org/medicaid-and-nursing-homes/

I am NOT an attorney but I think you need a separate bank account for your mom.  Her assets may need to be separate from yours for a lot of reasons.  I think you can set it up in your name as an account for her and with you as her trustee or POA.

Iris L.

CamandHarpersMom wrote:

 I tell myself maybe when she has a separate area, it will be better and I won't fell like she's taken over our home. 

You must understand that dementia is a degenerative terminal illness.  Your mom will not get better and the situation will not get better.  Dementia does take over her life, and can take over the lives of everyone around, including small children.  You have to do everything in your power not to let that happen! Make plans now.  Read a lot.  Post a lot.  The members here know the most.  Several have small children at home.  I suggest you do a search for those threads.  The advice is the same--focus on and protect the children.  They have only one childhood. 

Iris L.

King Boo

www.nelf.org will give you a list of Certified Elder Law Attorneys.

Generally, unless it is recommended by the CELA that gifting is done, do not put the proceeds from your mother's house in your name.  It goes into an account that is opened with your name as Durable Power of Attorney for Jane Doe.

If you put it in your name, it is subject to loss in a myriad of ways and not be there to help pay for Mom's care.

towhee

I agree with terei, don't take one single financial step without talking to a CELA lawyer. If you can pause temporarily on selling the house that might be good. Absolutely do not mingle her money in any way with your money. Don't change her social security and pension accounts, especially if they are direct deposit.

Your mom is probably only at the beginning of her journey with dementia. She will need care for years most likely and care is expensive. By the time you can build her a separate area in your house she might not be able to stay in it alone and there is no way you can take care of her and two toddlers alone long term. In home aids start at 20.00 an hour. Your job is to use her funds to give her the best care you can long term, and that might mean long term care. AL starts around 5K a month, MC 6K a month and Nursing home 8-10K a month. It is not impossible that she might need Medicaid and you have to plan for that. You have to make sure you don't do something that will make her ineligible when you need that care. Talk to a CELA lawyer. There are a great many wrong things that you can do.

Do read Understanding the Dementia Experience, it is short and free. Another great resource is the book The 36 Hour Day. If you prefer to listen try you tube videos from Teepa Snow titled Making Visits Valuable or videos from Dementia Careblazers.

How do you get care- The easiest way is to use one of the national franchises like Home Instead, Comfort Keepers, etc or smaller local companies. You can try care.com or ask around for people who will work privately. Your mom pays for it.

Wish you well-

RanchersWife

I wrote a long post about how you can care for your mother and your children. I’m doing it. Others have done it to the end. But the post was lost when I hit the post button. I’ll try to come back and recreate it. There are many here who will tell you that you cannot mix children and dementia. You can. It takes planning, commitment, time, effort and prayer...more than you think you have. So please don’t be discouraged by people telling you you have to place her because you have children.

RosesareRed

Bless you for all you are doing for your Mom.  It is a huge job, even before you add in two little ones and all that entails.  I'm so sorry for this journey you are on.  It isn't easy now, and there is much more to come.  

I am in awe of those who are able to care for their loved ones at home.  I wasn't even able to try with my Mom.  We were told she wouldn't live long after two heart attacks. (That was three years ago)  With her size and constant needs, it is impossible to bring her home.  But I had my Dad at home with Alzheimer's for a year after my Mom went in.  He joined her in skilled nursing when he developed blood clots in his leg and his dementia progressed rapidly.   They are both still in the facility.

My husband was wonderful.  He supported every step, but eventually he had to make me see reality.  My health and sanity were at risk.  I couldn't do it alone.  My siblings were no help.  I have been seeing a therapist to unwrap all of the feelings I have about the last three years.  I gave up special times with my children before they left home.   I cancelled so many plans and vacations so that I could be with my Mom and Dad.  Those are times I will never get back.  

The fact that you have small children is a game changer in my opinion.  They and your husband have to be your first priority.   You love your Mom and want what is best for her.  But I have learned that I am not what is best for my parents.  Not when I am not trained to care for them, and not when I am exhausted, angry, and resentful.  I found a wonderful facility that takes care of them better than I ever could.  And I am a better daughter to them because I have my life in order.  My visits are frequent and loving, not bitter and forced.  

Please, please, please talk to an Elder Care Attorney.  DO NOT make any financial decisions until you do.  It can come back to bite you!  Don't worry about the cost, it is necessary and worth it.  There is a process that has to be followed whether you have her at home or in a facility.  My parents home and assets were sold to pay for their care.  But it had to be done in the correct way, not to mingle with my personal accounts.  Keep it as clean as possible.  If you have to apply for Medicaid, you will have to provide account statements for up to the last five years.  And proof of any property sale or money transfers during the last five years.  You don't want it mingled with your accounts.