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Caring4Shotsy Asked September 2012

I'm new to caregiving (5 months) and feeling "invaded". Is this common? Will it go away?

My mom has few major health issues. She is not demanding or difficult. I handle her meds, take her to breakfast once a week, fix her dinner, take her to the movies occasionally, doctor, or shopping. I do her laundry (about 2 loads a week). She naps everyday, which gives me some alone time. Mom uses a walker and is overweight. She has no desire to exercise at all. Not even a short walk in our court. My husband and I can even leave for a few days (she wears a medical/emergency button) without worry. We have wonderful friends/neighbors to help if needed when we're gone.

So...what's the problem?

She's a sweet old lady, who's pretty easy to live with. So why am I still feeling so invaded? How could I possibly feel bitter about having her here? Why do I get a judgmental attitude at times? Identifying feelings and expressing them does not come easy for me. I'm struggling with WHY I'm feeling the way I do. I don't understand it. Things could be FAR worse. Any feedback, comments, advice, would be greatly appreciated.

Thank you!

johnnycares Dec 2012
Yes and yes yes,When it first starts and I had no clue what was going on in her,my wife,head. After she was found out that she could not remember,I was able to understand much better,but yes it's very hard,god bless you and the rest of use too!

golden23 Dec 2012
caring4shotsy - wondering if you are still around and how things are working out. Taking someone onto your home is a big invasion, a big change, especially if it is someone who needs your care and will be needing more. There are alternatives.

(((((((debralee))))) you have every right to keep your lifestyle, and your privacy. You have worked hard for it. As long as your mum safe (in all senses) warm, and fed, which a facility, eg an ALF, can look after your duty is fulfilled. Personally, I do not believe that anyone need sacrifice their own lives for a parent. Medicaid is available if financial resources are not there for an AlF or a NH.
Here4her - I hate hearing that your health is suffering so much.,Can you not look into and ALF or NH. for your mum? You are not a failure in any sense. You have given your mum 8 years of your life, but it has been too hard on you. That is no body's fault. Surely she does not want your health to suffer. There is no point in continuing to drag your health dow. It can take years to recover from caregiving. Please do not cave into FOG -fear, obligation or guilt. Some can do it for years, and survive,and some can't. Again, it is no one's fault. I care for my mother at a distance, but due to her BPD and narcissism even that was taking a toll on my health, so I had to back off. She is well cared for, even though she complains a lot, but she would do that anywhere, and 3 years later, my health is slowly recovering. The stress was just too much, and it sounds like that is the case for you. You must look after yourself. I am sorry you quit a good job, and hope you can get your health back, and make some big changes. Please look at some of the alternatives.
((((((((hugs))))))) love and prayers to all Joan

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Here4her Dec 2012
I also took my mom in when she was in great shaPe. She wanted to
Come and we had room. Now after 8 years I have so many chronic
Illnesses, my life and health is very bad. The stress, depression, loss
Of Freedom and then her declining health has taken a toll on me.
She is niw in respite so I can nurse myself back but it isn't working
I love my mom so so much and I feel like such a failure.
You took her on too early, things will only get worse. I hope you didn't
Quit a good jOb I quit a good career - I can't get that back so financially
I am worse off.

Labs4me Dec 2012
I have raised three children and a grandchild with finally being an empty nester after 40 years. I enjoy my freedom and privacy with my husband and want it to stay that way. Unfortunately my elderly widowed mother is hinting around about moving in with me when she cannot live independently any more. I dread the very idea of having to become responsible again for another dependent person even though it is my mother. I value my privacy and being able to freely chose how I live my life. This was a long term goal I have finally achieved after years of working toward my retirement. I do not want to give up my lifestyle to anyone. So to answer your question, yes, caregiving to a parent would be even more tramatic because just when you think you are done, you have to start over.

cmcwrinkl1 Oct 2012
I feel this, too. My mom's needs are minimal compared to others here. But she is always around. Yes, I can go places by myself and she is safe enough to stay at the house by herself. But I still now must consider her in everything I do. It's like being married, almost, where you are always considering your spouse no matter what is happening. I can't really just do what I want to do when I want to do it. And I know I made the choice to move her in with us and there are many good things happening, but having the constant concern of another person is very difficult.

Maybe for people who have been parents, it isn't as difficult? I never had children (being the oldest of 6 kids and being so much older than the others, I felt I had done enough parenting in my life.) And sometimes I think the reason I didn't have kids is for this time now. But I sometimes wonder if people who have been parents find the adjustment to caregiving less traumatic.

Seastar Oct 2012
I just had to remember that my Mom was pretty much trapped with me when I was little. She was on her own - true. However, she was able to find little ways to have some alone time and save her sanity. Now I am in that position with her. I don't feel trapped most days, but I have hired a teen to stay with my Mom while I take a bicycle ride or go to dinner with a friend. You've taken on a lot with Caregiving - you'll find that processing your feelings takes time and time of course is what we are all short of in the Carer role. If your Mom is in good shape, can you locate a safe place for her to have an outing for an afternoon or two a week? This helps reclaim your own space and feel some normal. Best to you in your journey!

rovana Oct 2012
Ronny, about the husband who thinks he has to honor his
"deal" with mom - would it help to remind him that he made an even more serious deal with you, you know, about cleaving to each other, forsaking ALL others, becoming one flesh til death parted you? It's fine that he wants to stand by commitments, but the fact is, he is already booked, and mom is not part of that commitment.

Mrsprim Oct 2012
My journey down this road has just begun. I have all the fears that are listed in this post but the most helpful read is suzyque and I'll keep telling myself "No, she isn't doing this on purpose". She spent 18 years providing for me and I don't care if it takes another 20 of my years to take care of her, it's the right thing to do. It really is hard to be strong for them and then go it alone to cry your heart out. It's heartbreaking to see it happen. You try and prepare yourself for the day but you're still not ready when it does. Stay strong fellow care-givers and know you're doing what you hope someone would do for you when your times comes.

suzyque Oct 2012
I read an article today that says the first step is to accept that my life has changed and accept that she isn't doing this because she made a decision to become angry or scared and act out. She has lost control of her life and it is scary. She won't even admit it to herself. I have to let her know she can depend on me and hopefully that will help calm her and make it less frightening that she is losing control. Like I said, yesterday didn't go well. I can only start over and hope it all goes better today.

jw Oct 2012
To answer your question, yes... It is very common.

We begin caregiving with all the best intentions, and we quickly find out how consuming it can be. There are times when it can be downright overwhelming, and I'm not even talking about the physical load. That comes later, as your loved one declines.

Probably one of the least addressed difficulties of caregiving is the feeling of the loss of identity experienced by all caregivers. Almost by definition, we gradually become an extension of the one we care for. We become their legs and arms and hands. Our minds become filled with the concerns that used to occupy their minds. The things they could once do for themselves, we now do for them. And again, I'm not even talking about major things...just the little day to day things. But all those little things add up.

And when the details of your loved one's life begin to crowd out the details of your own, it's natural to feel "invaded." That's a very good word to describe it.

Here are three important things I have learned:
1. Caregivers, in the beginning, often try to take on too much. Way too much. With the best of intentions, they try to "take over." Not in an aggressive way, but in a genuine attempt to be helpful. But that often leads to problems. Either your loved one vehemently resists, in an effort to maintain control over their life, or they give in completely and become totally dependent... sometimes prematurely. Either scenario spells trouble for you.

2. Resist the urge to do everything for them. Allow your loved one to remain as autonomous, independent, self-reliant and active for as long as it is safely possible. This will allow them to feel like less of a burden, and also help combat depression. It will also give you more of a sense of freedom. There will come a time later when constant care may be required Save your strength (and sanity) for then.

3. Develop a strong, reliable support network for yourself. Do it now. Are there family members who are willing to share the caregiving responsibilities? Even part time so you can take breaks now and then? Are there financial resources so you can hire occasional respite care? Will Medicare or insurance cover home health assistance like a visiting nurse, nurses' aide, physical therapist, etc.?

Are there local agencies and services that can help lighten your load? Eldercare services, senior centers, adult daycare, meal delivery services? Find out what's available in your areaband make use of every form of assistance you can.

Locate support groups and go to the meetings. You need what they have to offer. And chances are there's someone there who needs to hear what you have to share. Get support. Ask for help. Don't ne shy. Don't be proud. If someone offers to help, say "Yes! Thank you. I would REALLY appreciate that!"

You're only 5 months in, and hopefully you haven't begun to burn out. Don't let it come to that. Watch for the signs... The feeling of being overwhelmed, crying, anger, frustration, feelings of hopelessness, isolation, depression, fear, guilt.

Set up your support network now so you'll have ready resources if you do experience burnout later on. It's so important to take care of yourself. More important than you might think right now. But trust me, it's important to have someone you can talk to, a place where you can go to get away for a little while, and some kind of work, hobby or creative outlet that will help you maintain your identity apart from caregiving.

I wish you all the best.

jw Oct 2012
To answer your question, yes... It is very common.

We begin caregiving with all the best intentions, and we quickly find out how consuming it can be. There are times when it can be downright overwhelming, and I'm not even talking about the physical load. That comes later, as your loved one declines.

Probably one of the least addressed difficulties of caregiving is the feeling of the loss of identity experienced by all caregivers. Almost by definition, we gradually become an extension of the one we care for. We become their legs and arms and hands. Our minds become filled with the concerns that used to occupy their minds. The things they could once do for themselves, we now do for them. And again, I'm not even talking about major things...just the little day to day things. But all those little things add up.

And when the details of your loved one's life begin to crowd out the details of your own, it's natural to feel "invaded." That's a very good word to describe it.

Here are three important things I have learned:
1. Caregivers, in the beginning, often try to take on too much. Way too much. With the best of intentions, they try to "take over." Not in an aggressive way, but in a genuine attempt to be helpful. But that often leads to problems. Either your loved one vehemently resists, in an effort to maintain control over their life, or they give in completely and become totally dependent... sometimes prematurely. Either scenario spells trouble for you.

2. Resist the urge to do everything for them. Allow your loved one to remain as autonomous, independent, self-reliant and active for as long as it is safely possible. This will allow them to feel like less of a burden, and also help combat depression. It will also give you more of a sense of freedom. There will come a time later when constant care may be required Save your strength (and sanity) for then.

3. Develop a strong, reliable support network for yourself. Do it now. Are there family members who are willing to share the caregiving responsibilities? Even part time so you can take breaks now and then? Are there financial resources so you can hire occasional respite care? Will Medicare or insurance cover home health assistance like a visiting nurse, nurses' aide, physical therapist, etc.?

Are there local agencies and services that can help lighten your load? Eldercare services, senior centers, adult daycare, meal delivery services? Find out what's available in your areaband make use of every form of assistance you can.

Locate support groups and go to the meetings. You need what they have to offer. And chances are there's someone there who needs to hear what you have to share. Get support. Ask for help. Don't ne shy. Don't be proud. If someone offers to help, say "Yes! Thank you. I would REALLY appreciate that!"

You're only 5 months in, and hopefully you haven't begun to burn out. Don't let it come to that. Watch for the signs... The feeling of being overwhelmed, crying, anger, frustration, feelings of hopelessness, isolation, depression, fear, guilt.

Set up your support network now so you'll have ready resources if you do experience burnout later on. It's so important to take care of yourself. More important than you might think right now. But trust me, it's important to have someone you can talk to, a place where you can go to get away for a little while, and some kind of work, hobby or creative outlet that will help you maintain your identity apart from caregiving.

I wish you all the best.

Ronnystee Oct 2012
MyWitsEnd, I hear you. And I have already started applying for jobs everywhere. I of course, started close to home, then expanded out. I do have an interview Friday, but job is still over a 1 hr commute each way. Here is the part I haven't mentioned yet: my husband does not plan to move with me IF I need to move for my job. He says we made a deal with my mom so he is going to honor the deal and doesn't seem to mind that I might move on. How do you think that made me feel? Guess my marriage wasn't as strong as I thought it was. He cannot understand my feelings of resentment or anger. I told him when his 401K ran out, he would understand. Because believe me, it's gonna run out faster than he thinks. He is only 65, so not sure what his plans are to support himself and my mom.

littletonway Oct 2012
I completely understand. Mom has been with us for 2 years; in the beginning using a walker and able to dress and get around a bit. Now totally incontinent, cannot get from wheelchair to sofa or bed without assistance. We are thankful she is sharp as a tack with no mental issues. One person cannot take care of another for 24/7 without outside help and support.

It is a total lifestyle change for us and with no assistance from siblings other than short visits causing lots of stress. I do have help several times a week so I can get out and we have a nurse that comes so we can take weekend trips. This is not the retirement my husband wants or deserves. It is beginning to affect my health and general feeling of entrapment.

You just have to do what is best for you and your family. As I say frequently, we are not expected to give up our lives, health, marriage or the wellbeing of our family to care for our parents. For us, Mother will be going into a very nice NH and will have her own nurse/companion each day. It was not an easy decision. I know we are so blessed to not have financial issues either for us or Mom. I do think the NH will give her more stimulation, access to physical therapy and interaction with others. I know it does not end my caregiving or sense of responsbility...however; we get our home and privacy back and that is pretty dang important at this point in our lives.

God bless you for what you are doing!

MyWitsEnd Oct 2012
I think you need to be honest. Set a timeline. If you can't find a job by X date, you will need to move to where you can find a job. Maybe start applying to jobs where you want to live. Then be matter of fact about it. You have to be able to find a job and pay your bills. It is more important to be where you work than to be convenient to your mother's lunch dates. I sometimes feel like I have to treat my live in MIL like a three year old.

Ronnystee Oct 2012
Suzyque and all others with moms that have real health issues.....I can't imagine the mental and physical stress that you are all experiencing. I think that we all think we are strong enough to endure whatever we need to because.....they are our parents. When it comes to dealing with quantifiable health issues that prohibit our parents from taking care of themselves, we seem to have very little choice but to take care of them. I applaud you all. I am afraid that my mother is going to "wear out her welcome" before she gets to that point. That is what scares me. I have always thought that I would be the one to take care of her when she could no longer do that for herself. I was not and am not happy that she is living with me at this stage. As it stands, I have so much resentment towards her right now that when the time comes that she REALLY needs me, I will probably not be around. Moving to the area where she has always lived, to make it convenient for her has made it extremely inconvenient for me in that I have been trying for 6 months to find a job with no success. Her response to me is to just be patient. That is easy for her to say when all she does is right me a check for her third of the bills and my husband and I are making ends meet by withdrawing from our 401 K accts each month to make ends meet. She has no clue, she is in her own little world of self centeredness, taking 2 week vacations to NC, weekly visits to have lunch, getting her nails done etc. I cannot even afford a pedicure. She told us.....and I quote: ". I am just going to let you and .ron deal with the financial stuff, I just don't understand any of it" which is complete and utter bull.

suzyque Oct 2012
I understand how you feel. I have been feeling like I lost my own life somehow when my mom moved here recently. Now I believe she is showing symptoms of the onset of Alzheimer's. It is overwhelming to take in all at once. I am trying to learn to accept that my life is not the same as it was a couple of months ago and that she is going to depend on me to basically be her everything. A good cry once in a while is not out of line, but then I guess I just have to learn to be more understanding. I did not do to well at that yesterday when she made a scene and everyone was staring at us. I will have to start over fresh today.

Ronnystee Oct 2012
I understand. Mom lives with us too. She does NOT need any help at all. She just wanted to live with us. I should not have agreed.....yet. She will most likely be with us for many years and I am so unbelievably depressed at the loss of my life. My privacy. Everything. She drives herself, she does her own laundry, she goes out to lunch, gets her hair and nails done, travels etc. I am so resentful at being sold a line of bull a mile long about how she was "afraid" to stay by herself. She is doing everything she wants and I spend all day applying for jobs. (we moved to her neck of the woods to make this happen). I cannot find a job in this area and am being forced to look outside of our immediate area, which could quite likely neccesitate me moving to another area if it is too far to drive. I am doing this because my mom is only 77 and I am only 56 and too young to retire. So, yes, I understand completely.

NancyH Sep 2012
I agree, you no longer have the privacy you once did, and it's bugging you. I think that it's just going to have to be a 'mind set' on your part. To just accept that this is the way it's going to be till something changes, and tap into the part of your brain that is logical and accepting of the circumstances. You can do this, and it will be fine. Your mom can't change how her body is working, so you will just have to change how you think about this. Enjoy her while you can, I would give anything to have my mom back again.♥

Jacksonville58 Sep 2012
The problem is that your mom is invading your privacy. It's great you are able to get away for a day or two. There'll come a time when her mobility issues will get worse.

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