I'm afraid I won't be able to continue being my mother's full-time caregiver. She's in her mid-80s and lives with me in my small house. She has mild dementia and other health problems, and she's a hoarder. I fear that if I move her to another living arrangement, such as a nearby condo nearby or even a care facility, she'll really go downhill. She's terrified of living alone and wouldn't go willingly to a facility. But I also feel as if it's come to a "her or me" situation.
I work full-time, but her care, physically and emotionally, is increasingly all-consuming. In the past few years I've lost friendships and even dating relationships because she's so jealous and petty.
Now that I have a health crisis of my own (I've been diagnosed with lupus), I feel that I have to start taking better care of myself -- and I don't even know how to begin. I'm exhausted and worried all the time, to the point of almost being too paralyzed to make any decisions.
First, let me state how wise you are for realizing what you can and can't do as a caregiver, daughter, and woman. Caring for your own health and life is paramount at this point. You're to be commended for keeping all this in perspective while still caring for your mother as best as you can.
Before you do anything, sit down and make a plan -- not only for the level of care she requires now but for what she may need in the future. She might be hiding some of her physical and cognitive issues. Further, health and mental decline isn't always slow and steady. She may trickle or plummet. It's hard to say; you have to be ready for anything.
Given her age and declining health and condition, I'd lean toward incorporating her longer-term care into whatever decision you make. Moving her into a condo might not last long, and it would add costs in terms of in-home health care, housekeeping, and so on. And she may simply be unable to live on her own. You need to look at her finances, her insurance, what Medicare can offer, what your community has nearby -- all the possibilities that could help her in the state she's in now, plus the state she could be in five years from now.
Go ahead and talk about possibilities such as assisted living (although if she has a memory disorder and hoards, she might already be past what many assisted living facilities can offer in terms of support). You might also consider live-in care, home health aides, Meals on Wheels, community and volunteer care, and help from your siblings or other relatives. There are many ways for her to receive assistance from someone other than you -- and she could develop friendships and supportive relationships with peers or even health aides, depending on where she's living.
It will take a good bit of your time and effort to research all this and then to implement the necessary changes for your mother's life. And you'll need to realize that some changes won't work out and will need to be adjusted. But this effort will pay off. It will also give you the opportunity to think about your own future. Double-dip and begin to create your own long-term plan.
While you're researching all of this, see if there are local adult day services where your mom can spend some time one or more days a week. She may be busier and happier with more social contact with the outside world. And you can get some needed rest and "alone time" while you make plans. Or, even if you're at work while she's away, you'll know you'll come home to a tidier house and a happier living companion.
Your statement that you're "exhausted and worried all the time" tells me that you're deep in caregiver burnout. I implore you to take action. It's not going to be easy to begin to put yourself first -- to eat well, take your medication, get enough sleep, and begin to reconnect with lost friendships and other relationships. Your body is asking for help. Don't ignore it or tell yourself to be last on the list.
As hard as it is to say out loud, your mother is in her mid-80s. I hope that she's had a good life, with family, friends, and adventures big and small. You deserve the same. Do what you can to manage your mother's care with love, kindness, and consideration -- and with healthy boundaries. Carve out the time now to invest even more in your own life. That's not being selfish. That's being responsible for the gift of life that you've been given.
Reclaim your life and your home. Believe that the more you do to bring balance and wholeness to your own life, the more you'll be able to benefit your mom as well.
My goodness the guilt trips being placed on this stressed out caregiver...Please enough!!! I agree with things you all have said but this disease is trial and error because there is little help in the community and medical professional know little nor have the time to help. When there is only one child doing the work and the parent is making it difficult to get along with and interefering in your personal life and your are strapped in every turn you want to find a way for relief. Placing them is not always the best for them in fact most the time not the best. No one will love and care for your parent like you do but only the caregiver can answer when the time is to make a change and no one can question them, place them on trial or accuse them. I like all the suggestion the expert gave in offering suggestion on ways to keep her in your home yet find some respite for yourself. Whatever way you decide know you did your best. There will always be guilt no matter which road you take. We kill ourselves with "should of's", "if only's, "if I just could of's" no matter what. So know you did your best.
My mother is a person whom becomes ill when someone like my grandparents go in to the hospital. My mother has cried wolf most of her days. Now my dad has just had open heart surgery. So while dad in the hospital, my two sisters and myself are staying with her. Right from day one dad went in she has suddenly turned worse. She cant get up. Cant make it to the bathroom. When we happen to not be there she calls saying she is on the floor and cant get up. When getting there she is in bed. She plays each one of us different and against one another. She has been so negative all her life. She has laid in bed for years, with my dad allowing it. We told her that the doctor has told us that or dad needs help for weeks after coming home. So he cant be waiting on her. We do realize she is getting forget full , weaker, all of the above. HOW CAN YOU TELL IF ONE IS PLAYING ILLNESS? HOW DO YOU ABOUT HANDLING A PERSON LIKE THIS? I could go on. Her acting this way has and still does come between me and my sister's relationship. Which my mom enjoys seeing us battling with each other!
YOU BET I HAVE REGRETS. We spent 3 1/2 years living with my widowed mother-in-law in her home. We were nothing to her. We gave up our home, our pets, our freedom, our privacy to care for a lazy woman who thought she was royalty, couldn't be bothered to answer a phone sitting right next to her. Our marriage was failing, our health was failing, our friendships were failing, our day jobs were in jeapordy. When we asked the relatives for help, they were too busy. They even got MAD that we had the audacity to insinuate they weren't doing enough. She's now in a nursing home, still demanding we visit daily, and on weekends, and complaining when we remind her we have jobs, and a home of our own now. The rest of the family still gets a free pass She actually said we didn't have lives, and the others did, that's why it was OUR duty to care for her. And while her daughter vacations, and boats, and parties, her loyal son slowly dies of cancer, watching his time just slip away, working and workig and working and facing her constant dissappointment and criticism. YOU BET I HAVE REGRETS. When MY parents need help, I'll do my share, but i won't do everyone's.
I think the key to being a caregiver has to be to survive so that you can continue. My mother is 82 and lives in a nearby apartment. She lives alone and we can't afford to move her into assisted living. She only has social security courtesy of the current economy. Our home is small and my husband works out of our home. I teach full time. Frankly, at 56 I wish someone would take care of me. I find all my spare time taken up with my mother's errands, my mother's doctor's appointments, my mother's shopping and cleaning and there is no time for any of these things for myself. I would like just one day alone, one day to sit and have a cup of tea and read a book. I haven't seen my own kids and grandchildren in weeks because every spare moment is taken up. I wish I didn't feel so bitter and that it didn't translate as selfish. There has to be a middle ground. I honestly sometimes think that I will keel over before my Mom does. Given recent medical evidence, I'm not far from wrong.
Do you have any suggestions or good recommendations on getting a health assessment for a parent? How does the assessment process work? How do you get started?
My heart goes out to everyone who is a caregiver. Sadly many of us have regrets about things we've done in the past, but we all need to keep in mind that we did or attempted to do what we thought was best at the time. Try not to second-guess yourselves now that your loved one is gone. Dwell not on the bitter and sad memories but on the happy and pleasant ones. That in itself will help you to find peace within yourself. Hugs to all the caregivers out there - new, seasoned, and former. Frances
I comment your responses. I wish I could of done more for my parents. Now they are gone for ever. Mom was the strong one who took care of everyone. I didn't have the insight to go beond just a weekly visit. But I was there with Dad while Mom was in the hospital where she passed away while I went home for the night. Now I find myself feeling lonely, I guess just like my parents did. I do receive phone calls/emails from my two adult children, who are now getting close to 50 yrs. old. They above anyone else should know better, they are very well educated with master degree is a teacher and a banker, married to a doc and a surgical nurse. Never asked how their father is doing,who has alzheimers, diabetes and a mental disease. My husband has always been sick and sick while my parents were still living. I remember after my mother passed away, in 1997, I would cry and all my daughter would say, "is knock it off". With the help of their grandparents financial help and mine financial help they just don't give back. If I could of far seen into the future they would of both worked to get their college degrees. They give me no advice or any emotional support OR any financial help. I am just left with the local agencies and very grateful for their support and Adult Day Care. My daughter only lives 2 miles away and my son lives 3 hrs away but he could come if he wanted to. He comes for everything else
I became so angry with my mother she was angry n agossip she spread vicious lies I stopped speaking to her @ age 80 I wished I would of tried harder to communication with her n spend time nothing matters but being with the parent who took care of us when we couldn't. She never said she was perfect. She died @ 81 wish I had more time.
I took care of my Mother from 1999 until she passed away Easter Sunday 2008. I now look back at the things I tried to make her do for herself, thinking that was the best for her--to keep her moving and it breaks my heart that I was so heartless and selfish. I wish I could take back the times that I made her walk to the car to go to her doctor's appointment I wish I could pick her up and carry her, she carried me for many years. She gave me life and cared for me until I left home. The least I could do for her was to care for her as best I could. I wish I could hold her one more time and tell her that I love her and that nothing in the world mattered except her. Any friendship or relationship that is lost because of caring for a Mother or Daddy was not much of a relationship to start with. this lady is in her mid-eighties--she can't have too many years left. life goes on, but she will never be there for another birthday, Mother's Day, or Christmas so cherish each day with her and take care of yourself , you will never regret it.