Am I making the wrong decision to want to care for my mother at home?

I also cared for my mother for 10 years before she died of metastisized breast cancer = lymphoma and bone cancer. It was not a horror story, just difficult to see her suffer, but so happy to have had that time with her. Same with my Dad. I am not trying to transfer my situation to someone elses or compare. Each experience is unique in itself. All I am saying is to cherish every moment that you have with your parents as you travel down the road of caregiving, however difficult or not it may be for you and your family. It is never a horror story, and I do not view it as such. I guess I took offense to you referring to in that manner..
Caregiving is kind of a learn as you go situation. Sometimes families are thrust into this situation overnight, without much time to research and become informed in advance. Sometimes not..I am not trying to impose on or scare anyone, with my experience. It is just my story to tell.

Redmax,
My comment was never meant as criticism- it was about understanding. I cared for my mother in my home for over 16 years. Depending on the environment- home is not always the best place to be, but in my situation and for my family it was. Yes we made changes and rearranged our lives. It wasn't easy, but it was a choice- and for my family it was a choice that I made and they had to live with- and we worked through. As for horror stories- there are times when we take what is going in our life and apply it to others.I can recall several times in my life where I had life changing moments such as pregnancy or marriage and well meaning strangers and friends were more than happy to tell me how things didn't work out well for them. The reality is that we are all diffent. The dementia is different, our relationship to the person is different and how we will deal with the situation is different. There is not right or wrong way to care- what works for one person may not work for another. As caregivers, we need to pull in all of the advice and then do what is going to best for us- and the person that we are careing for. I was fortunate that I had a terrific day care center that was dementia specific that my mother attended for over 10 years. Later on, she was on and off hospice. Care costs, emotionally, physically and financialy. No matter what our personal situation, caring for a person with dementia whether they are in our home or in a facility it's going to affect us. With proper guidence, education and support, living with a person who has dementia will be easier- not better- just easier, and as caregivers this is what we need to hold on to and reach out to.

You really need to weigh out the options here. One is your mom and the effects on her of moving her to your home. Why do you think an adult daycare center will work, when she is in a place where they probably have daily activties that she doesn't participate in? Is it because she can't get to them or because she chooses not to. If it's the latter, she probably won't be very happy in an adult daycare situation. And except for you, she will also be alone in your home and without socialization. The other thing to consider is the effect on you and your family. My hospice chaplain told me that caregivers have a very high rate of fractured families, either children problems or divorces. Your husband says he is open to her moving in, but doesn't want to become a babysitter. What happens to your marriage when you are a 24/7 babysitter? Unless your mother is able to live independently and stay at home unassisted, you will be giving up your freedom to come and go as you please. Take it from one who is there, that becomes very isolating and oppressive. I think if you are going to do this, do it with an open mind and not as a final step - keep the option of returning your mom to assisted living viable.

Nataly1,

I am sorry you view relaying or sharing our life experience in caring for a loved one as "horror" stories. In caring at home for our loved ones, you must be prepared, so that your expectations are realistic, and hopefully to be helpful in coping in the present and future. This forum is for the purpose of being up front and honest, and being able to share in the event it may help someone make this very difficult decision. Of course it is not all about you, but instead for providing the very best care and environment for your loved one, filled with love and caring.
All our hearts, I would like to believe, are in the right place, in wanting to be there for our loved ones. I also believe home is the best place to care, no matter how difficult and sad the task is. i wish someone had prepared me in advance. My decision would still have been the same, to bring my love one home, but to be informed in advance of potential situations, can be a useful too to eliviate some of the stress involved. If you have never done this before, you have no idea. Also, a big part of it is to go day by day, as things change constantly, and you must readjust, especially to make things safe and comfortable for your loved one.
It is the hardest job I have ever held, but also the most rewarding. Good luck and thanks for giving me the opportunity to share. As Caregivers, we must reach out ot each other for support, not criticism.

Dear Newathis,
I typically do not respond after posting,and in life, there are times when the rules that we make should change- this is one of them. You have a difficult decission to make. You have read all of the postings- it now comes down to you and your family. Are you able and capable of taking on the care that may be needed- I say may because each family is different and the care that you will need to provide- despite any diagnosis, is going to affect you and your families current life. This is not about gathering all of the horror story's- it's about what is best for you and the person that you care for. Don't look back or second guess yourself. If you feel that bringing your loved one to live with you is what is best for both of you at this time- go for it. Depending on where you live, there are alot of community resources that can and will support you. When and if the time comes that it is not in either of your best interest- and you know in your heart of hearts that you did all that you could do and that placement in a facility, no matter how difficualt, is the best place for them now- due to financial, physical or emotional resons -know that you will make the right decission. It's not about you. So many times caregivers try to do the right thing when actually they are so concerned how their family or others will see them - and judge. Please try not to fall into this trap. It sounds to me that your heart is in the right place. If you want to bring your loved one home to live with you, give it a go. If it doesn't work out, you succeeded in trying.

Patrica, many condolances for your loss. Thank you for sharing your wonderful words of wisdom and understanding. You give us all something to think about. What a journey you and your mom had. So praiseworthy that you were with her to the end. May God comfort you during this part of the journey, and give you strength as you grieve the loss of your mom.

THERE ARE MANY PLACES OUT THERE. YOU CAN EVEN CALL ELDER CARE THEY CAN GIVE A LIST. VISIT MANY AT DIFFERRENT TIMES. DO WALKS INS. CHECK AT LUNCH TIME HOW THEY FEED THE RESIDENTS. I WAS VERY LUCKLY TO FIND A GOOD ASSISTING LVIING, I WAS THERE ALMOST EVERY DAY AND AT TIMES I SLEEP OVER TO MAKE MOM FELL GOOD SEEING ME THE NEXT MORNING AND SAYING GOODNIGHT. ITS IS HARD TAY WITH THE INTERNET PROGRAM IT HELP ME THROUGH MY TIME OF NEED. I JUST MOM TODAY MONDAY NOV 5, 2009.PATRICIA61

My Father complained so much about the assisted living facility he was at, which was very nice, by the way, that I moved my Father back to his home and moved in with him..he is 85 and had a stroke. He needs minimal supervision and cannot drive anymore. I thought it would not be that difficult. I was wrong, it is the hardest job I have ever held, on top of watching him decline, which is sad. I have no life, and he is so moody, that no one comes around anymore. Please think twice before you make this decision. I was warned in advance, by a Senior care advisor, and didn't listen. On top of taking care of his every need, i have to run the household, pay bills, wash, clean etc, and there is no time for me. The mental and physical strain is incredible. Respite is expensive, plus he wants no one else but me around, refuses to go to daycare, so it doesn't happen. Of course, then there is the guilt for feeling this way because you love them dearly. I am sorry to sound so negative, but this is the reality. Caring for the elderly parent is no easy task. Good Luck.

YES THIS IS A VERY HARD QUESTION TO ANSWER, I MY SELF WAS ELECTED TO BE MY MOTHERS DURABLE POWER OF ATTORNEY, LEGAL EPOXY, AND EXECTIVE ON HER WILL WIHT OUT MY TELLING HER ANYTHING, THING WAS BEFORE THE ALTZMEIRS, STARTED, I WAS ALWAYS THERE FOR HER, AND WHEN SHE GOT BAD, I WAS FLYING BACK AND FORTH OVER SIX YEARS FROM TAMPA FLORIDA TO NEW YORK. TAKING CARE OF HER. THE LAST TIME SHE FELL IN 2005, AND WAS PUT INTO A NURSING HOME I KNEW I WANTED HER WITH ME IN FLORIDA, IT TOOK A LOT, SINCE SHE OWNED A HOME, THE TITLE WAS NEVER CHANGED AND I WAS STILL WORKING. I LEFT MY JOB IN JUNE 2005, TO START GETTING MOM READY TO COME TO FLORIDA. DUE TO THE CONDITION OF THE HOUSE I HAD A LOT OF WORK AND CLEANING. I DID NOTICE BACK IN 2001 SHE WAS HAVING PROBLEMS WITH MONEY, SAVINGS THINGS, NOT PAYING BILL SO I DID CHANGE THE CHECKING ACCOUNTS TO READ POWER OF ATTORNEY. SHE WAS IN A TOTAL OF FOUR NURSING HOMES IN NEW YORK DUE TO REHAB, AND THE LAST ONE THE ALTZEIMER'S WAS BAD AND ALSO HER DIABETIC CONDITION. THE HOSPITAL DID NOT TELL ME HOW SICK SHE WASS, I WAS THE ONE IN 2003 AND TOLD THE DOCTOR SHE NEEDED TO BE TESTED. MOM CAME TO FLORIDA NOV 10, 2007 AND WAS WITH US FOR FOUR DAYS, WED SHE WAS IN A ASSISTING LIVING HOME CLOSE BY. WE DID MAKE OUR HOME SAFE, SET UP A BEATUIFUL ROOM AND A EXTRA ROOM FOR A NURSE IF NEEDED IN OUR OWN HOME, BUT THE FIRE DEPT HAD TO BE CALLED TUES NOV 13, 2007. MOM WOULD NOT TAKE HER MEDICINE. THEY ADVISED ME THAT I COULD NOT DO THIS ON MY OWN, BUT I WAS LUCKY I DID FIND A SFE PLACE FOR MOM AND WAS THERE ALL THE TIME HELPING OUT AND ENJYING MOM COMPANY. I DID HOWEVER BEFORE BRINGING MOM TO FLORIDA LOOK AT 10 PLACES AND FOUND THIS BEAUTIFUL HOME WITH LOVING CARING PEOPLE, CLEAN ALL THE TIME, FAMILY TYPE THROUGH A SWEET LADY IN THE HOME DEPOT STORE. IN CASE I COULD NOT DO IT MYSELF OR EVEN FOR DAY CARE FOR MOM . I WANTED A CLEAN PLACE TO HAVE HER LIVE HER LAST YEARS OUT.IT IS HARD IF YOU CAN DO IT I BLESS YOU AND GIVE YOU STRENGTH AND GET GOOD HELP FOR YOURSELF THAT YOU CAN TRUST. WITH ME THE THE TRAVEL WAS GETTING TO ME OVER 30 TRIPS. I AM TYPING THIS E-MAIL OUT LATE AT NIGHT, MY MOM JUST DIED TODAY AT 1:57 P.M. HOLDING ON TO MY HAND HER BODY COULD NOT FIGHT IT ANY MORE. I LOVE MOM AND MISS HER SO MUCH. LIFE IS SO SHORT, WE MEET MANY BATTLES ALONG THE WAY. GOD WATCHES OVER US. BUT MOM IS IN A SAFER PLACE WITH NO PAIN. I BLESS THAT I HAD THE SUPPORT OF THE ASSISTING LIVING, FIRE DEPT AND POLICE TO BE WITH ME I WAS WITH HER IN HER LAST HOUR HOLDING ON TO HER. YOU HAVE TO MAKE UP YOUR OWN MIND, MAKE SURE HOW BAD HER CONDTION IS FROM THE DOCTORS. I HAD NURSING SOCIAL SERVICES NURSING AIDES HELPING THEY DID NOTHING. THE HOUSE WAS A MESS. I JUST GAVE HER LOVE AND SUPPORT, BEING THERE ALL THE TIME AND SOMETIMES SLEEPING OVER AT NIGHT AT THE HOME OVER SO SHE WOULD SEE ME BEFORE SHE WENT TO SLEEP AND GOT UP. MY DID KNOW ME UNTIL A FEW DAYS AGO HER BODY STARED TO AIL. SHE WAS ONLY IN THE HOSPITAL AND WAS SENT BACK TO DIE WITH LOVE, SUPPORT, COMFORT AND BE WITH FRINDS SHE LEARN TO KNOW. *BLESS YOU AND THANK ALL OF YOU FOR BEING OUT THERE GIVING YOUR LOVE AND KINDNESS. CAREGIVING IS HARD IT NEVER ENDS EVEN WHEN THEY ARE IN A ASSISTING LIVING OR NURSING HOME OR WITH YOU. THAT IS YOUR LOVED ONE. PATRICA61

Wow, this is a big major life change decision. None of us on this web site can make this for you. We can not physically be there for you when you need time off or when a caregiver cancels. Careing for a person with dementia is hard. The fact that you want to take on this task- my heart goes out to you. You want to make her life better- the reality is are you going to be able too? What is lacking in her current assisted care facility? I hear your care and desire- how is it going to affect the relationship with your husband? He doesn't want to be a baby sitter. . . Will this be the cause of a breaking point that you want or don't want? Overtime, Mom will need alot of hands on care- there are agencies and services that can help you, but the reality is that in some areas the care is spotty. Even with live in care you will still be a hands on caregiver no matter what. Spontanious week-ends will need to planned in advance for food, activities, and supplies. Even when you are gone, you will need to check in to make sure that all is well at home. I didn't know this in advance of careing for my mother in my home what caring for her would entail- even with paid caregivers. The reality is that I would do it all over again knowing what I know and lived through. The piece of mind that I have is priceless- what I payed for her care emotionally and financially...for me, it was worth it.

I don't think it's a wrong decision if that's what you want to do. Just be sure to let her know that you will continue to go and come as you please. Since you will be hiring live-in care, you will get some time to yourself as well!

All the best.
Jackie

Dear newatthis, you got some excellent suggestions and balanced feedback from september, Annlidiot, jmhca, ksue, and marylee. It is so very wise of you to ask for counsel up front, as this is often a life-changing decision for everyone considered. It seems your heart is in the right place. It is difficult to give perfect advice, as each situation is different, and no one can really tell you what to expect, except to share their own observations and experiences. Still, those may differ from yours. Getting help seems to be the overall concensus here. Just know we want to encourage you in whatever you decide to do. Take care, and best wishes.

It's probably the hardest job I've ever done. But also, the most rewarding. I took my Mom from a nursing home in September 08. She had severe Dementia. There were times I thought I couldn't do it another day. Honestly, it's a very tough, lonely, journey. I had very little help or support from family. You need to make sure you get some help. You still need to take care of you! If she needs 24/7 care, you have to get some respite care away from the everyday caregiving stress. I did what I set out to do for my Mom. I cared for her till she passed on September 11, 2009. I would do it all over again, if I could.

I care for my mom 24/7. I only get 1 day off a week . And it is short and sweet. Some times I don't leave the house for a week and it has be weeks without leaveing the house . That is not good.
You have to make sure you can come and go has you need to. You must have help. And enough money to surpport you and your mom.If we run out of milk it might be days before I can go get some. Just think about all this before you do it. You have to have other people who are free to help you out. Good luck.

I may be a bit biased because I provide home care services for older adults, but I will tell you that I recently moved several individuals out of assisted living back to their own homes or their childrens' homes. The reason for each move is that the family did not feel like their loved ones were getting the proper amount of attention from the individuals at the facility. This is often more than a social issue. Some older adults need constant supervision, or they run the risk of falling, or, depending on their condition, worse. Assisted living works for some people who can function somewhat independently or for those who take advantage of the social activities. But for many, they don't get enough one-on-one attention from the staff because each staff member is assigned many patients. Can't you use some of the money that's being paid for assisted living for home care services? Even if it's a few days a week, you would have some respite. You should also look into your local senior center or adult day care center for additional respite time. You can find these by contacting your local Area Agency on Aging. I don't think you're making the wrong decision. You just have to make sure that you can handle it because being a 24/7 caregiver can be extremely stressful. There are, however, many who do it because they believe in their hearts that it's right. You just have to make sure you have the proper supports in place.

It sounds as if you are not cut out for taking care of a 89 year old from what you have written. What is motivating you to have her move in with you. You owe it to yourself and her to be honest before making the move. It is not simple

My mom is almost 89. It is very hard for me to watch her decline, as you said. And, also hard to think of being her primary caregiver. I have 2 brothers who live far away. It's not like I'll mind her living with me, it's just that I KNOW for my own health, I'm going to need time away from her. I don't really know how the day care programs work -- I'll find out next week when the offices open. I've just always been so spontaneous -- if I want to go with friends for a night out, a weekend or even camping for a week, I would just go. That will soon change, and I need to know that there are some options for me.

That is a hard question because it can be difficult and I am not sure if anyone knows the answer. My 88 year old mom lives with me and her aging is depressing for me to watch. I love her with all of my heart which is probably the reason it is so hard to see her decline. Maybe someone will have a better answer for you.
God bless you .