I am about to embark on this care journey for my mother. I read numerous posts and responses and still want to give it a shot. I am an only child and I have always been there for my mom so I feel I can't stop now when she probably needs me most. I realize she is in the beginning stages of Alzheimer's/ dementia because she still recognizes my entire family, but cannot keep new memories or experiences. She eats breakfast and forgets that she ate soon after. She moves into my dining room this coming week. I am relieved she isn't very far, but also very scared as to what's coming down the road in my/our care journey. I can't wait to hear tips from everyone.
Your letter for advise touched me. You are such a good daughter, and you have the right attitude that is grounded in love. Despite knowing some of the travails in front of you, you still want to do it.
These are the things I wish someone had told me, for me: Be kind to yourself. Meditation can get you through some very tough times. Have a sense of humor - laughter really is the best medicine. Support groups also help.
These are the things I wish someone had told me, for mom: Alzheimer's is more cruel than you can know at this time. Not knowing is a blessing.
Taking care of my mother full time for the last 8 years as she disappeared into Alzheimer's was much more a gift to my life than a burden. She didn't know who she was or who I was anymore, but she knew she was safe, taken care of and loved. We talked, I listened, we laughed. If I needed to refocus her on something positive, pictures of her grown grandchildren and great grandbabies, would make her happy, even if she didn't know exactly who they were.
She's been gone for 7 months now. I miss her smile everyday. The gift she gave me was trusting me to care for her until the end. It has given my life meaning and understanding that I would never have had otherwise.
Wishing you the very best!
it's been about 10 days. We do have help during the day, which is pricey, but that's the only way it can be done at this time since my husband is home during the day. We will continue to have help, until financially it's not manageable and I hope for the best. I just wish the mental health issues are addressed so we know what we have in store. I am not saying to have her drugged up, but just to take the edge off her OCD, irritability and combativeness and negativity. Thank you for your advice. I will definitely research for a support group but not sure when I would make that unless it was right after work.
Imagine how much drama and tension you'll experience and do likewise.
Many people assume that the very infirm cannot possibly live for longer than
a year or two and throw themselves into their care. Many years later they
are only a shell of their former selves, their family finances have been decimated,
their family is exhausted and/or alienated and their LO, although even more debilitated is still going strong.
Even a quiet pleasant parent with mild Alzheimer's can have a big impact as
their care is 24/7. Because of fall risks and wandering they cannot be left alone
Those who are combative, negative or even abusive are akin to throwing
an atom bomb into your life. Go forward with great caution. Educate yourself
on all the possible risks and downsides.
NOBODY is going to help you. The government gives NO help. and your life savings will be decimated. The stress is oftentime unbearable and it makes me wish the government would hurry up and do WW 3 and get it over with.
"Unfortunately for us, my mother has always been an angry negative person so I am worried about our decision."
". . . my daughters still live at home and they have work and school. "
I am seeing a LOT of red flags in your latest post.
How old is your poor mom? This could go on for years and years, in your home.
I do have a question about “how to have her communicate with me when she needs help at night”? What have you found to be the best way. My one friend has her mother using a whistle but I cannot do that because my daughters still live at home and they have work and school. Any tips would be much appreciated.
Best of luck! and I commend you for being willing to take care of your mom yourself, despite the difficulties that you know lay ahead. If I were to summarize important advice it probably would be:
- Be aware that the journey will be likely much more difficult than what you expect, therefore plan ahead. Create an structure (physical, emotional, psychological, financial) that allows you to stay organized and be in control of the situation as much as you can. The caregiving journey normally presents us with many situations where we feel completely out of control. Planning ahead will help you manage through that better, specially because your family will be impacted too. Get them to understand what is happening and get them involved. Getting them involved is the best way to prevent family issues, as the family dynamics will change and every body will need to be willing to adapt.
- Keep in mind your mom is ill. Digest that, understand that. Therefore nothing she says or does is meant to hurt you. She simply cannot help it.
She was negative and controlling before? Ok, before was before; just know and remember that what she does NOW is the illness talking and acting. Position yourself in a higher level of understanding, so you remain above all the troubles that may arise. And help your husband and children to realize that too. Watch Teepa’s videos on YouTube, they will broaden your understanding and prepare you with skills to live with your mom and care for her.
- Set time for you, only you, doing something you enjoy and relaxes you. Make it a date, and never cancel! The same way, set time for you and your husband alone, even if at night when others are sleeping, talk about the day, laugh, and go out. Set time for your family, with your children and husband. Reconnect with them, enjoy each other. Plan on a vacation all together and I’d suggest you do more of that while she is still in the beginning stages, everything will become more challenging as the illness progresses.
- Always remember you are doing something really good, priceless!! so don’t doubt yourself, don’t blame yourself, don’t let guilt take away from the value of the mission of love you’re embarking yourself on. You are giving your mom the best gift a human being can receive: Love, Time, Care. Just remember to give yourself the same treatment!
A hug and God bless!!
It takes a psychological toll on you but that can be dealt with later if you end up with no time for your own respite care in the process. The hardest toll it took on me was the lack of sleep. Constantly listening like a mother constantly alert. Mom passed 2 months ago and I still can't get my sleeping pattern regulated. I’m lucky to get a couple hours per night but I’m working on it.
It is the hardest yet most rewarding thing I’ve ever done.
I would add also that you keep these items in a safe place out of the reach of your loved ones reach.
Mom had all her paperwork in order and I had it in a file box in our spare room. Unbeknownst to me my mom who had dementia got into it and found her will and we still can’t find where she put it so now we have to let the state make a will for her which means her original intentions for her assets in her will are null and void and the state will now decide how they are distributed.
what a mess.
I agree with you 100% that this site is a wealth of information. It was my saving grace💕
There are many on here who can better guide you as they have actually filed for Medicaid. I have not. However I am aware that a couple of years in a facility would wipe out my aunts savings.
I don’t allow any of her funds to be gifted (which was a big job with her desire to help her family members) outside of a graduation gift or baby shower. Something small.
I make sure her money is only spent on her care, her home and her insurance, taxes, Medical etc.
Should she run out, I want her to be able to qualify without a hiccup. She is eligible for VA benefits and I plan to apply for that before Medicaid.
She is 92 and is healthy aside from mild dementia as long as she takes her bp meds and thyroid meds correctly.
She used to go to the bank (or have someone who didn’t know any better drive her) and get several hundred or even a few thousand out. Then she didn’t know what she did with it. That had to stop. So if your mother has grands who show up on SS payday, stop that. You just don’t know what is around the corner. If she needs you to care for her, then she’s not able to handle her finances IMHO. If that’s a hard subject to discuss with her, then you’ve already got a red flag. Don’t wait to establish boundaries. If she’s giving a wayward brother the money to pay his car note while you are paying for her room and board, that’s the same as you giving brother the money only worse because it is gifting and can cause her to have a penalty and be denied care when she needs it or you can no longer care for her.
I think every caregiver should visit a Medicaid savy certified elder attorney for a consultation on the specifics of the parents finances so that you don’t make needless mistakes. I hope that helps.
Emergency he was assessed for needing 24 hour care.They did the paperwork in Hospital and he was admitted for rehab to stay for LTC..he had 12,000 in the bank..I did not know about the 2000 rule quickly found out.
He had this for his funeral which I paid for a funeral trust for 10,000.
He never had any other money in the bank..just lived with brother caretaker
using his 800 social and 900 aid and attendance...He then after 2 mos qualifiying for Medicaid..paid the NH with his 1800 and Medicaid ...
He got an infection and died in Hospital only being in NH for 43/4 mos.
Basically Dad paid 10,000, and Medicaid 10,000 the rest the NH is trying to get from me for the after 20 day rule where Medicare stops paying if u have no supplemental...that is 161.00 per day.Sort of a nightmare..better to have homecare if u can or someone from the family..sound like she is ready for Nh or AL.
Don’t skip the basics. Educate yourself. It’s ongoing.
Don’t forget the other people in your life. Your decision will affect them profoundly. Remember that everyone’s life matters, not just your mothers.
Try to find balance. Be ready to change your mind if needed.
If possible. Accept help. Hire help. Seek out senior services. There is no virtue in wearing yourself out. Each layer of help will allow you to last longer. This is not a sprint and it’s not a walk in the park.
You probably don’t have enough time, money or patience to do it all right, so remember to pick some guidelines to go to, to make sure you are thinking straight.
For instance, I review the ADLs on a quarterly basis for my LO and myself.
I watch all expenditures to make sure my LO will be Medicaid eligible should she ever need it. If she doesn’t need it, I figure it’s still a good habit. Spend her own money on her care, not yours. Keep records.
I make sure all her legal paperwork is uptodate and accessible. I do this on her birthday.
I keep a daily calendar to make it easy to remember what happened when.
These are just some of my touchstones. You will develop your own.
There is a measure of comfort in knowing I’m as prepared as I know how to be as our lives move forward.
https://www.agingcare.com/topics/36/new-to-caregiving
DO NOT promise Mom she can live with you forever. That's the worst idea since--whenever. Illnesses, the inevitable decline...they will happen.
I hope you have assistance lined up, I hope you are incredibly patient. If you think Mom is going to be happy living in your dining room--she may just roam the house, are you ready for that?
I sound like a negative Nelly, but I have been there, done that and wouldn't do it again for anything.
However--good luck. And come back, We;re always here.
Ahmijoy is right on the money. I'm glad that you seem optimistic about your mom moving in with you. It sounds like you made a choice as opposed to not having any other option. That's a good way to start.
And I would imagine that you have researched Alzheimer's and know what to expect, in theory. That's good too.
Try to keep you expectations reasonable. I moved my dad in with me and he didn't have dementia and it was the most difficult thing I'd ever done. He's been dead for over 5 years now and I still wake up in the middle of the night thinking I hear him calling out to me. Caregiving gets into the psyche, into our bones, hearts, souls. We have to push who we are (and were) away in order to make room for another person within ourselves. Someone whose needs come before ours. Someone whose life we try to maintain on a daily basis. And in so doing our bodies, minds, and souls rebel because while we're capable of sharing ourselves with another person, we're incapable of giving another person free reign of ourselves. It's an unnatural state and it's painful and exhausting and maddening.
And please remember: if you find that caring for your mom is so difficult and you begin to wonder what you were thinking, it's normal to feel that way and doesn't reflect upon you as a daughter or a caregiver. I think you'll go through a honeymoon period in the beginning where you and your mom are nice and polite and things seem to be working out beautifully but the Alzheimer's will make an appearance. It will live with you too.
And I agree with Ahmiijoy: have a Plan B tucked in your back pocket. Don't get to a point where you're falling apart and your mom's dementia rules the house and you have no way out. Keep a Plan B in the back of your mind because there will come a day when you feel so trapped all you can do is cry. So don't get into that hopeless state. There are options.
Good luck to you and your mom!
If you have not made your home handicap accessible, things will eventually become very difficult for you and her. This involves much more than making a bedroom out of your dining room. And, speaking of that, be prepared that your entire home will look like a medical equipment warehouse. Mine does.
We alll go into caregiving with the best of intentions. We will never lose our tempers, never cut corners with caregiving, never get burned out, we will spend our days having wonderful conversations and spending time bonding with our much-loved one. Then, they get the flu and we spend 36 hours straight changing them, the sheets and washing the floor.
Have an alternate plan. Keep an eye open for a good facility in case it’s needed. Consider applying for Medicaid now. Keep an open mind, stay in contact with her doctors and do research about dementia. I wish you much luck and that you eventually post about what a great decision you made.
Ahmijoy gives good advice. Definitely have your “what if’s” lined up. And never, ever doubt yourself if you need to change course.
Best of luck to you. Keep coming back to AC Forum for support.