A recent MSNBC column from Rabbi Marc Gellman offers well-deserved thanks to the professionals who care for our elders. The column also touches on the guilt many feel when making the decision to move elderly parents into assisted living or other professional care. It’s human nature to think, “I should be doing this myself. Mom and Dad took care of me when I needed them, and I should be there for them now.”
The inescapable truth, as Rabbi Gellman notes, is that Mom and Dad may have care needs that go beyond what you, or anyone, can provide in a home setting. How hard this is to understand can depend upon how the question arises. If your elderly parents have been living on their own but now need some help, you have a chance to make a clean decision, based on what Mom and Dad need and how they can get it.
This is the situation that journalists (including bloggers) really like to talk about because it provides the opportunity to run through the familiar checklists of eldercare services and supports. Whatever your involvement in a situation like this, you can feel concerned and supportive and smart. You don’t have to feel overwhelmed, inadequate or unappreciated.
The tougher situation arises when you are already caring for Mom and Dad and realize that their needs have increased. In the case of a traumatic medical event, like a fall or a heart attack, the situation can still be clear. When care and support needs increase incrementally such as in cases of progressive dementia, however, you can be caught in an ugly and crazy-making emotional trap.
At the same moment you realize the care you are providing is inadequate to the needs that have to be met, you probably also realize that you can’t possibly do more than you are. You are like Alice in Through the Looking Glass when the Red Queen tells her, “…it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!”
Anxious and exhausted, you can find yourself believing that as a family caregiver you must do what you know you cannot do. Ideally, your own support network kicks in at this point, however, so that people you trust (i.e., people you will listen to) can tell you that it’s time to turn caring for Mom and Dad over to the professionals.
It’s a tough thing to work through, but my wife and I did it. You can, too.
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There are 6 Responses to “Who Takes Care of Mom Best?”
#2 Pete - 15 May, 3:00 PM
Thanks for your story.
This morning I read about the results of an Iowa State University study. Researchers found that although most women expect that they will have to care for aging parents, few do anything to prepare for it. Clearly, there is powerful guilt (fatalism?) at work.
Your experience is a compelling reminder that real life doesn’t respect the calendar much. “Typical” experience may not be your experience because every life follows its own arc. I’m now 60 and still see myself in the caregiver role, rather than the care recipient, but that (literally for lots of people my age) could change in a heartbeat.
#3 John L. Webb, Jr. - 15 May, 3:01 PM
Exploring Housing Options
Many older people arrive at a point where they need to move out of their own home into another living situation. This can be a very difficult decision to make, since many people plan to live out their lives in their current homes. It helps to think about and discuss housing alternatives before the need arises.
When possible, these decisions should be made with input from all the family members. You might do the research about options, and then openly discuss with the whole family the advantages and disadvantages of each option. It is normal for people to be resistant at first to moving away from a home they have lived in most of their adult life. But when housing repairs and yard work become more troublesome than enjoyable, they may begin to see advantages of other options.
It is important that you first consider all the options available to keep the person in his or her own home, since getting help that will allow the older person to stay at home may be preferable for that person and for you. If remaining at home is not feasible, you should then explore types of places that are available to help them relax and live in a place that can be supportive of their needs.
Moving in with children is one option that can have many effects on your family. This decision requires careful evaluation by all the parties involved. Family members need to be careful not to make this decision too quickly. Sometimes relatives think this is what is expected of them, even when it is not a good option. To decide if moving in with you is a good idea, you might ask yourself: Will the person continue to have choices about various activities, such as church-going, visiting friends, or having friends visit them? Is your home big enough for comfort and to protect the privacy of the whole family, including the aging family member? Are the needed community resources available to support this arrangement? Can needed services be provided in your home? What effect will caring for an older family member have on you and the rest of the family, particularly if you are employed or have other major responsibilities? Do you truly want to have the family member in your home, and does that person want to be there?
Taking the time to think about all these things and discuss them with others may help in making a decision that everybody can comfortably accept. If it is determined that moving in with relatives is not a good idea, there are a number of options to be considered depending on the needs and desires of the older person and family.
#4 Pete - 15 May, 3:02 PM
Thanks, John.
My mother lived with us for two and a half years, until her dementia reached the point where she need round-the-clock supervision and support.
The sociogram, so to speak, was a little simpler because I don’t have siblings, but the responsibility was greater because there were fewer people to help.
Your advice and emphasis on thinking and talking things through is excellent. Thanks for taking the time to share your wisdom.
#5 dtbic4grandma - 21 July, 4:48 AM
I started caring for my grandmother when I was 25. I am to turn 36 this August. Up until this last year she has always gotten better but it is clear things are progressing and there is no way even as burnt and intuitively knowing the body is tired and she is tired of hospitals that it will most likely happen soon.
I feel as if I have grown old taking care of her. Paraplegic and nuerogenic bladder. Now her hands can hardly cut her food and her memory for the first time is really starting to show signs of dementia. She was there for me when I was a teenager and my parents were going through their stuff. I spent a wonderful 6 months at her house and she helped put me back together with the maternal care I needed at that crazy time.
She paid for me to go to college she fixed my teeth when I was 20. My grandma was always, and I mean always, there with an ear. Even now she is. I see glimpses, but now she is for the first time disgusted with all the care and illness. When she first came to live with me at 71 she was told she would not walk. She was as sharp as a tack and the thought of her in a nursing home was too much to bear.
I cared for her for 7 years and finally there was a realization that she would not return to her home. She requires round-the-clock care. She sold her house over three years ago and very generously put the money toward a house for my husband and me and my daughter. We made it very easy with her being in a wheelchair and built a shower specifically for her as well as counters she can roll up to without the doors getting in the way. My uncles who have always said this is my choice to take care of her had a fit when she did this. Not one day, not one evening, and not one even paid day of help in appreciation for their mom staying out of a nursing home. I do not care what they think. I forgive them and realize they feel this way because they feel guilty for not participating in the care of their own mother.
This last year has been so hard on me. It has taken its toll on my marriage and we are doing better now. I am suffering major depression for which I am getting meds. Also I blew two discs in my back and was in so much pain for a good year and had to have steriod injections but thankfully no back surgery.
I feel like I am older than 35. I was so burnt out that for the first time when my grandma went in for a surgery I waited and when I heard she made it though I went in said hi and kissed her and SPLIT. Oh sure I went and saw her every few days but not like normal. I saw a chance for a little time of normalcy and I took it and savored and protected every stinking minute of it!
Problem is now she is home and my heart is not in caregiving anymore. It has been twelve years and she is always unhappy and my daughter who is very lively is always too loud or some reason for her to pick on her. This is especially hard because my grandma has always been so fond of children. I put her to bed and barely touch her and it’s ow and oh gosh; it’s just like she is so miserable. I feel like and always said I would do this as long as I could provide the care she needed and it made a difference. I came so close to putting her or should I say letting the hospital discharge into a nursing home.
My dad stepped up and said he would let her move in with him. We will hire 12 hour shifts of homecare and my husband and I are going back to school for, yes imagine, of all things healthcare and nursing (him) and Resp Therapy (me). We love caring for people and all the doctors and nurses have always said I did a good job and I love getting people well, but it is frustrating when you can’t do anything more.
Also I miss spending time with my mom before she is older and all my family that I can hardly ever go out of town and see. We will all move in together and we will sell my home and put the equity in the bank for two years. It is a beautiful home and we had it built but it can be replaced. The way I look at it delayed gratification and most important grandma still gets to be home.
Nobody on my dad’s side, including cousins, really talks to me anymore. I am the black sheep of the family. You know I only did this for the money. However, when you sit down with a calculator and divide twelve years of 24-hour care, I might add and maybe a week or two off a year plus the personal toll and I have not been working and building up retirment or ss. My grandmother wanted me to have a cushion for being out of the workforce for so long. I was so unsure about being done and I could not even go up to the hospital because even the doctor has said she most likely needed a nursing home now.
So I finally went up there and she understood bless her heart. She felt more bad for me and my dad having to make these decisions and said, well God will handle it. We came home and talked about all just biting the bullet and pulling together for a couple years and I get to pursue a future for myself and my dad gets to do his part for his mother and plus he is a great dad and he only lives one street over as it is now. We will help him out financially while we are staying with him. On weekends we will take our fifth wheel and head somewhere most the time so I can have normal time with my husband and daughter. We will have care for her on the weekends so my dad can have breaks too.
Two years will go by fast. Plus when we look back we will see that we listened to our hearts and banded together. Who knows what will happen though maybe in a few months she will require more care and at some point more than she can safely get at home. We will cross that bridge when we get there. I feel like a loser moving in with my dad at 35 but these are not for wanting to move back in with dad and mooch. It is a situation that requires special circumstances and houses can be built again and replaced but I think if I had let her go in a nursing home I would have had so much guilt it would have been terrible. I never would have forgiven myself.
Oh and another I can’t beleive this is the best we can do for our elderly moment I had apon this dishcarge. I was told by the social worker that we have a high population of elderly here in Redding. Only one nursing home accepted her. The nice one or nicest of the bunch one said they could not take her due to staffing reasons and provide good care for her. Plus she has MRSA VRE yeah that lovely bug that she has you know all the stuff you read about patients getting in hospitals. The superbug flesh eating bacteria. Well when she goes in the hosp she has to have a isolated room. So of course the nursing home does not want her to have her own bedroom. They might lose out on money. However I am like wait a second here all this superbug stuff what about my family and child. They said it resides in her stool. I know gross but true and as long as I did not get any stool on an open cut. Everything was great and have a nice day.
Unbelievable! This is the best we can do for our elderly? If I had my way I would open up a nursing home and it would have bright colors and smell like downey fabric softener all the time. I don’t care if I was just running the dryer for the smell I Would. I would also have art therapy and music and cherishing and reminiscing. Field trips to the lake or mountains just to get there and smell the air. Each nurses station would have a dog. Oh and my nursing home would be so highly reputable and sought after people would want there loved ones there and would have to really try hard to get them in. Best thing is it would be a not-for-profit hospital. I mean all the working people would have to be paid a salary, but there’s just some things people should not be able to get rich off of when it is crappy services that are being provided.
Anyway the stipulation or should I say care agreement would be like my daughters charter school. You would have to volunteer a minimum of four hours a month in making this place a great home for your loved one and other residents. Second and this is non negotiable-at no time unless at the patient’s request will extended care giving family ever leave recipient in nursing home for holidays. In other words we will provide the skilled nursing care and give her or him a loving place to call home but this ain’t boarding stable and you just can’t remember to come once a year.
That makes my caregivers feel bad and in turn makes them not as joyful in their caring becuase you have to keep yourself in a positive frame of mind for this kind of care. Oh I wrote a book but if anyone wants to start a place like this with me. I have the experience and heart for it if someone else has the passion for it too. I could just see us on CNN right now. A profile in America of average people who got tired of the care that was available to their relatives so they created their very own ideal of what the future nursing home of America could look like. Oh and I know this is nepotism, but my granny would be the face on the brochures as she has beautiful silver hair and I think she would make the best first patient. Thanks for listening to me if I didn’t lose you by now, I feel so much better writing all this down. Goodnight and good luck to all my fellow caregivers.
#6 Pete - 21 July, 5:24 PM
Thanks for sharing your incredible story! A recurring theme of this blog is that people who have never been caregivers for elders simply have no idea how demanding it is. Your story should demonstrate that simple truth to everyone.
Best of luck to you as your caregiving begins a new chapter.
#1 Belena Butler - 15 May, 2:58 PM
Informal and Professional Caregiver
Hello,
I just wanted to say that I have had to opportunity of both experiences. You see my mom became disabled when she was 50 and I was 25 at the time. This year will be the tenth year of caregiving for my mom.
Since then I she has been in two assisted living facilities, lived with me and lived by herself. I have found that her living by herself was the best thing. This is mostly due to the fact of her age.
I can relate to it being a struggle to come to that decision. The first time was because I needed to get back into my practice and the second time was because I felt it would be best for her.
My experience has been that care could be better. My reasons for that opninon are not related to this thread, so I won’t go into it. The most aspirating thing,however is the emotional part. :cry I cried each time, I put her in an assisted living.