She is almost 88; a kind, loving person; and beyond her issues of self-neglect and passivity due to a lifetime of her own trauma and difficulty (70 of her years were devoted to caring for ill and aging — usually unappreciative — family members), she is a delight and has always treated me with kindness.
At the same time, I am an only child, 58, male (no children of my own) and have been her primary caregiver for the past 7 1/2 years. I moved her into my home when her (emotionally abusive and unkind) sister, who she had been caring for, passed away.
My mother has, in these 7 1/2 years, fallen a half-dozen times, had three surgeries, several ER visits/hospitalizations, and a number of additional health challenges, including kidney disease (no need for dialysis at this point). She has also become more and more passive, withdrawn, sedentary, and is often depressed and/or anxious (which she does take medication for which has only a mild effect). She also has very little appetite and has been living on nutritional liquid shakes and an occasional cup of soup for the past 4 years. In spite of repeated doctor’s instructions and her kidney issues, she also refuses to drink water and is chronically dehydrated. She is frail (at least partially because of being so sedentary and only drinks her nutritional shakes when I constantly remind her) and often depressed. She has begged me not to put her in a ‘home’, and I have committed to keeping her here in my home as long as possible, unless she should decline to the degree that 24/7 care is required.
I am struggling personally because in recent months, I have been waking up most mornings with the wish that she pass away soon. When I anticipate her passing, I feel that 80% of my feelings will be relief and only 20% will be grief.
I have zero regrets in terms of how I have cared for her to date — even in the face of the significant personal and financial sacrifices — I have treated her with kindness, dignity, respect, compassion. And, I am so tired of the constant feeling that this is now my life and I wonder how much longer I can go on without paying a price with my own emotional, psychological, and/or physical health.
She rarely leaves the house anymore except for doctor visits — and in those now-rare occasions when I am alone in the house, I feel a sense of tremendous freedom, expansion and relief. The same when I go out of town (my girlfriend and I get away one weekend a month; I also travel for work about 3-4 days per month — during that time hiring an elder care person to stay with mother).
As I read many of the posts on this forum, I am struck by the depth of suffering and abuse other caregivers experience. I am very fortunate — I don’t experience any of this, and I have long ago worked through (with the help of counselors, ministers, and loving friends) my ‘mother issues’. So I realize I am better off than many who are dealing with abusive, bitter, mean, narcissistic parents.
At the same time, appreciating that it’s not as bad as it could be doesn’t take away this feeling. I am simply tired of caregiving and all the sacrifices it entails.
My greatest fear is that by the time she does pass, I will be so burned out, exhausted and depleted that my own life will be practically over.
Thanks for listening and for any reflections you might have.
God bless you all. This is hard stuff.
I'm the only one right now caring for mother with dementia.
But because I know where my mom will go when she passed away I don't feel so guilty.
I don't want to see my mom suffer.
God bless you!
Lucky you, you have a girlfriend! Could you increase time spent with girlfriend and decrease time spent with mom (hire help)?
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My DH and I have struggled with this in far too many c/g situations over the last 15 years. Your words could be mine.
So many things come with time and experience, but that whole hot mess of feeling that you described above is unbelievably difficult to “resolve”.
And so...
you are not alone in this:)
Re: Mid-kid’s comment... “My sweet Grandma was worried that she would outlive people's love for her.”
This is one of my own biggest fears also. I am in the middle of my life and already I pray, daily, that I can bring joy up until the very end. DH and I joke that hopefully, if we get dementia, we can be the goofy, silly pair that always act like they just shared some weed on the sly;)
We obviously are in the camp that God has a sense of humor, lol.
Years ago when my mother died I also felt relief - relief that she was no longer suffering. In her case I truly believe I did my grieving when she received her terminal cancer dx and then seeing the horrors she went through.
You say you have committed to keeping her in your home as long as possible. That is admirable but please if the time comes when you do need to place her in and SNF be easy on yourself with the realization that you have done the very best you could. You sound like a kind and loving person.
My mom was 89 when she passed, and had been in a NH for her last 14 months of life.
That person was not my mother. My mom would never discuss an end of life plan with my brother & I while she was alive ( and I did try to discuss this with her over and over through the years but she would just avoid the answer,changing the subject every time), I knew my mother was “gone” in the sense she couldn’t remember who we were the last 4-5 months prior to her death.
Thus when the hospice nurse called to let me know that in her opinion my mother was actively dying and wouldn’t make it through the day, I was, of course, very sad but knew it was her time to go. My mother was such an independent and strong woman all her life. She worked until she was 72. I believe she developed dementia over the last 2 years of her life from the anesthesia she underwent to fix her broken hip. Mom has a mastectomy for breast cancer @ 81, a double vessel cardiac bypass @ 84 and lastly a hip replacement after she fell and fractured her femur @ 87. I kind of knew that last fall with the hip repair was going to be the beginning of the end for her as many here in this forum have had the same result.
In the end, while very very sad, I knew as I sat with her at her bedside her last day, that her death would bring her peace and she’d be free from the horrible disease that is dementia along with mom’s inability to eat, speak and her movements were reflex movements from the parts of the brain affected by her CVA.
Yes I was heartbroken when she passed but I was relieved her suffering was over.
Please don’t feel guilty about feeling the way you do. I think it’s more common than not.
Good luck and God Bless you on this journey.
This is a wee off topic, but I remember after her double bypass surgery the surgeon told my mother that the surgery fixed her heart and she’d be good to go to live for another 20 years. Both my mom and I looked each other and then at him and chuckled; 20 yrs would put her at 107 years old. The surgeon then caught himself and chuckled with us after he did the math. Mom did tremendously well after that surgery - it was amazing. God didn’t want her yet.
I work full time at a stressful job and then go home to another stressful job. But I think you have been dealing with even more than me.
I understand completely your feeling that when your mom passes you will get your life back. I could deal with my husband but when his mom moved in it just put my life in a whole different mode.
My mother-in-law is 95. I think to myself that 100 is a reasonable time to expect her to live. I often think to myself "One year down, four to go". She has always been good to me, she always is appreciative of what I do for her, but it is just draining.
I have been seeing a therapist who says that these feelings are normal. She has also made me realize that just because I realize that others are doing more, my own reality is still that I am doing a difficult thing.
I guess I just want to say that you are not alone, which does not make the day to day care easier. Caregiving is very hard. If you begin to feel overwhelmed or depressed I highly recommend seeing therapist. My insurance covers it as a Specialist doctor visit so it is not that expensive
You are doing the right thing to get away for a weekend regularly, and your business travel is a break of sorts.
I don't know if this helps. Bless you for what you are doing. You are a special person. Many would just put mom in a home and go on with their life.
Take care and have strength.
Keep doing what you are doing as CW & CM stated. And your doing a good job.
By the way, I feel the same way about my mother who has dementia & CHF and I find myself wishing her heart would just give out, so, I could be free!
God bless you.
She can pretty much live her life without needing too much care, which is good b/c brother will not allow outside help into his home. He has also cut off ties with me, the only other sib who was willing to help at all.
She's tired and kind of depressed. A little dementia, which you wouldn't notice unless you spent longer than 10 minutes with her. Spends her days in her pjs and looking out the front window or watching TV.
I talked to her a few months ago and she was saying that her doc said she's in amazing condition (I'm sure he didn't say that)---and I noticed her ankles were swollen enormously--asked her about that and she said "They are?" I know her liver is failing and her kidneys are barely functioning. She will always say "If I wanted to, I could kill myself by just not taking my pills and insulin". (She's been suicidal all my life, never acting on it, nor even close--it's a control thing). I said "Yep, and nobody would fault you for doing so."
I have already pre-grieved plenty for having a mother who is incredibly selfish and self serving. You wouldn't see that if you met her, she charms the socks off people she's just met. I'm not going to be sad when she goes. She isn't happy (actually, never has been)...she's lonely but won't leave her house if you try to take her anywhere but to the dr's.
My sweet Grandma was worried that she would outlive people's love for her. She was wise to know that years upon years of CG will wear a person to a nub. She died a week or two after a bad fall.
Mother has long since outlived her "sell by" date. And I think she will likely live 10 more years.
It's not considered very "nice" to say you won't miss nor grieve a person's passing. Sadly, I have known MANY people who died and nobody seemed to care.
I am constantly amazed at how long a person can live with barely functioning organs. I am done "caring" for mother, as brother says I cause too much drama. Fine, I was beyond exhausted anyway. I burnt out completely trying to do a good job and in the end, got the boot anyway. And I had been a PROFESSIONAL caregiver for a job.
Buried in the thread "I wish my mother would die" are many comments similar to your own, not all the people on the forum are caring for the wicked witch of the west. Caregiving takes a toll on our relationship with those we care for and alters it in ways we never could have foreseen, especially when it goes on and on. I agree with Countrymouse about finding ways to move caregiving to arms length and replenish your own soul, for myself it wasn't until I (very reluctantly) placed my mother in a nursing home that I was able to regain some equanimity.
You will mourn. Once you recover from the exhaustion, you'll begin to mourn the real mother. Feeling relief from the burden is separate, and natural.
The promise not to put one's parent in a home - deep sigh - is one you gave freely, yes? Not under the pressure of emotional blackmail? There again, you're doing better than many others :) The only thing is I don't agree that such a commitment should prevent you from looking at respite care. Of course many weaselly families place their loved ones in residential care pretending it's temporary, but it doesn't have to be a pretence! Do go and visit any facilities near you that offer respite breaks and at least consider a trial.
If you wait until your mother has passed away to focus on your own life and your own fulfilment, you will resent her and you will wish her away. You're already doing so much to maintain normality - whatever that is! - that I hesitate to reiterate the point to you, but do more of the same, perhaps?
What about your girlfriend? What's her view?