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Overwhelmed caring for Mother of Alz(1)
Currently overwhelmed with the responsibility of caring for my Mother with Moderate Alz. She has lived with me and my husband for several years and over the last year has become a lot worse. I have several siblings, but are really no help. The enormity of caring for my Mom and not letting her down, is so stressful. Watching her slip away, and not be able to find her words and get emotional is beyond hard. Her symptoms have become a lot worse over the year. She is desperately trying to hold onto her independence but unable to do simple tasks.
My sisters only call when they want or need something...which ways on my heart even more. They have asked to borrow money from her...which upsets me...because later on, she doesn't even remember lending them the money. My husband and I care for her completely, and don't take a dime from her...so this puts stress on our marriage when she gives them money. I feel like I am constantly put in the middle....sympathizes with her as a Mother, ticked at them for actually asking their 70+ Mother for money, and then I feel bad for me. (It is a cycle I am exhausted from. I stay in contact with my siblings for my Mother. She has always been the peace, love and happiness lady...and since she lives with me, its hard for me to cut ties with them. (as much as I would like to) I feel like I would be punishing her. I now check her checking account daily, and keep an accounting to make sure they are not taking advantage.
I just feel so lonely. My son just left for college, and now should be a time when I would have time with my husband. Unfortunately, I don't feel comfortable leaving for a weekend...or even having a date night. I am a under 40, and feel like I am climbing Mt. Everest alone. This is the first time I have ever posted anything or joined a support group. I just was hoping maybe there was someone else out there that might be going through the same things....or maybe has some advice.
My Mother never saved for any events like this...so she only has SS. So I know my options long term are extremely limited. If anyone has advice on care options out there when patients do not have the means to pay for memory care or long term care facilities...I would be grateful.
First of all my heart goes out to you and I want to say what a loving, strong daughter you are. I have no business giving out advice bc I too posted for the first time yesterday, and I am not the full time caregiver of my mom (diagnosed 6 yrs ago) but will be soon bc of a horrible incident changing our world last Sat.
Anyhow.....last night at the hospital I met a brother and sister who told me the best thing they did was hire a geriatric lawyer. They paid 3500 up front and then another amount (they couldn't remember exactly). The lawyer fixed their mamas property so no one could take it and told them about a Medicaid waiver. Basically it pays for her nursing home room. It is not the same kind of Medicaid that you normally hear about. Your mother would have to have no more than a certain ant of money in the bank and the nursing home gets her ss check -50.00 that she gets for her hair etc. I know this isn't much help and not my own personal exp but it is something I plan to look into and hope somehow it can help you too. Blessings to you and your mama.
Wow, when I read your post I could have written the exact one. I am the sole caregiver for my mom who is 90. My mom has lived with my husband and I for the past 17 years in a in law suite. The past 2 years have been difficult for me dealing with her decline from dementia. I also feel alone as my 2 brothers are useless. They call and see my mom maybe once a month if I am lucky. I had to leave my job to take care of mom and my life just about stopped.
Vacations were not enjoyable because my brothers would be calling me every hour to tell me mom was too much work and they could not watch her. I finally stopped asking for help from my siblings and got outside help. I now have an aide come in 4 days a week for 3-4 hours, this allows me time for myself and my sanity. Without this help I would no longer be able to care for her. For the first time in July my mom went to a nursing home for respite for a week and my husband and I took a vacation.
Years ago we hired an elder attorney and my moms aide and respite care is paid for by MassHealth in our state.
I wish you all the best, you need to get some help not only for you mentally but physically as well. God bless.
sam0678, for what its worth, you are not alone in this. Many of us have gone through this to one degree or another. Its never easy, but you can make it. A few words of advice:
1. The advice about talking to a geriatric or elder law attorney is sound if you and/or your mom can afford it. Laws in each state are different, and the lawyer can give you valuable advice on how to proceed on legal grounds.
2. Regarding legal matters, if you don't already have one, I strongly advise you to work with your mom to get a durable general power of attorney, a medical POA, and a living will or DNR in place. Also get listed as a joint owner on your mom's bank accounts. She may still be able to handle some of that now, but it won't continue, and, if you wait too long, the lawyer may not feel able to help with the POAs since they need to ensure your mom understands what she's doing when she signs the POAs. Also, be on the alert for scammers targeting your mom. Telemarketers also.
3. Start looking for a full time facility for your mom. I know, its one of the hardest decisions you'll ever make, but the time will come when caring for her in your home will be too much - it will consume you and you'll still fall short of giving her the care she needs. Its better to start looking now. It sounds like your mom has some resources (she's lending money to your siblings) but not much and may end up on Medicaid. That's okay. There are good facilities that take Medicaid. One thing to keep in mind is that some of them will be easier to get your mom into if she can private pay for a period of time before she goes on Medicaid (the elder law attorney may be able to advise you on this). You/she may need to start telling your siblings no on the lending so you can preserve her resources for that initial private pay period.
3a. By the way, be aware also that lending/giving money to anyone, even family, will complicate getting her on Medicaid later - up to 3-5 years later. Talk with the elder law attorney to confirm, but you may be advised to stop doing it now - even church donations may count against her.
4. Another reason for starting to look now is that, as Bentley6 mentions, Medicare will pay for up to 5 days (I believe that's the limit) "respite" care. The respite is for you - its to give you (and your family) a break. If you combine this with the looking mentioned in 3, it'll give you a good chance to check out the facility for future longer term use.
5. Finally, please take care of yourself. If you don't, you'll let everyone down, including yourself, your family, AND your mom. Talk to the elder law attorney, local community or state agencies for the aging, or alz.org to find out what resources are available to help.
My heart goes out to you. You're exhausted and overwhelmed taking care of your dear Mom. I understand how overwhelming it is to be a sole caregiver and have a sibling(s) who not only doesn't help, but instead asks for money.
I took care of my mom with moderate (vascular dementia) for the last year and her needs were quickly becoming more and more difficult. Her ability to walk decreased very quickly during the past year, so she needed more assistance with all of her activities of daily living. When I needed to help with her toileting 24/7 without any break, the stress level really skyrocketed.
We finally got a caregiver every morning for 4 hours, thanks to Mom's long-term care insurance benefits finally kicking in. That made a huge difference! Although my husband and I often spent the time running errands, we also used the time for "us" together, which we desperately needed.
I suggest contacting your local Alzheimer's Association chapter, the Area Agency on Aging, or your county government to see what local resources are available to help give you a respite. At one of the Alzheimer's meetings I attended, they mentioned this grant program for caregivers. Maybe it could help you. http://hilarityforcharity.org/programs/grant-program/
You are a wonderful daughter to your mom. You're doing the very best that you can. Bless you as you find some support for yourself so you can continue to be your mom's advocate. Hang in there!
If you haven't already seen my post, I am in the process of making my mom a ward of the State. From what I understand, the State of Hawaii will become my mom's legal guardian. They will control her assets and put her in a home.
When she becomes violent, I couldn't wait to make her a ward of the State. But the more I think about it, the sadder I feel. To most people, she is a sweet lady. It's true. She is sweet, except when she turns on her other personality. She has Alzheimer's.
I feel bad. I feel bad when she finds out what is going on. I feel bad that she won't have Korean food. She won't have Korean TV nor newspaper. She won't be able to smoke whenever she wants. She will be shocked and feel betrayed.
But it's best for the long term. We don't have money to put her in a care home. And when her brain starts to shut down, I won't be able to provide 24/7 care.
I feel for you and best of luck to you.
Moon Yun aka Hawaiigirl
Hi Sam! I can also relate. You have gotten great advice. I just wanted you to know I too am exhausted. And, I know it sounds selfish when you think you don't have a life of your own. This disease brings so much sadness, frustration and anger (especially towards useless siblings)
Get help outside of your family. Try to take care of yourself. This does stress out everyone who is involved. We are in a war that nobody can win.
Thank you for your kind words! I will start looking into a geriatric lawyer, and trying to get my ducks in a row as far as all my options. Thank you for taking the time to read my post, and writing me.
Thank you for taking the time to read my post, and to respond with such a thoughtful note. I will be looking into a geriatric lawyer, and trying to find out all of our options. Yes, useless siblings are the worst! We went on our first vacation in 3 years this year, and I was told my sister would stay with my Mom while we were gone...little did I know when we got back, my sister just came over for a few hours a day to sit with her so she wouldn't be a lone when she bathed. I mean seriously?!
I know ultimately my husband and I are alone in this....it's just nice knowing there are others out there you can talk to. Thank so much!
It sounds like your Mom is a very lucky woman, and you are an amazing daughter as well! 17 years is a long time, and you too have sacrificed a lot to be an amazing caregiver.
Take care, and stay strong!
Thank you for taking the time to read my post, and responding. The advice you gave...I will put into action. I will start looking into a geriatric lawyer and getting that ball rolling. The advice and insight so far I have received from this group has been wonderful. It's nice knowing you're not completely alone. Thank you again for the support and advice! Sam
Thank you so much for taking the time to read my post, and responding. It sounds like you have had your fair share of struggles and hardships. I will start looking into respite care options, and a geriatric lawyer as well. The advice given in this group has been amazing. It's just nice to know you are not alone. Not that I would ever wish this on anyone....it just nice to have a group you can go to with questions, and support.
It sounds like your Mother is blessed to have an amazing daughter. Take care of yourself as well, and if you ever need to talk I am here.
Hi Hawaii girl,
Thank you so much for taking the time to read my post, and to respond and to share your own story of your Mom. I am so sorry you are going through this. This disease is absolutely awful....how it can take away the ones we love, and make them someone else completely. Stay strong, and know that you are doing the right thing. If you ever need to talk I am always here.
Again, thanks so much for reaching out. It's nice to know we are not alone!
Thank you so much for taking the time to read my post and for responding. It's nice to know I am not alone, and that there is support . The advice that has been given has been great, and I can't thank everyone enough. I appreciate your kind words, and I pray that you all get the rest and support needed. I pray that one day soon...this disease is figured out, and there is a cure.
Thanks again for reaching out!