Hi all,
I've written a few times here usually talking about how difficult caring for my two elderly parents has been. My Mom has dementia, my Dad doesn't.
Last week we moved my Mom into memory care. I've been crying ever since. You may have read my posts. Read about the deep unhappiness as a result of 24/7 caregiving. Needless to say, I was not prepared for the avalanche of emotions that just keep rolling over me. I don't think I've ever experienced a pain this deep.
Please, if anyone has gone through this can you advise me? Does this ever get better? Is this pain going to be with me forever? Because, in all honesty, it's about a billion times worse than I felt with her at home.
I'm so sorry you are going through so much anguish having moved your mom into memory care. I think you are being too hard on yourself and expecting way too much from not only you but, the situation as a whole. You simply haven't given yourself enough time to adjust to the tremendous change.
I don't know of anything that is "perfect." That being said there are positives and negatives to any given situation and decisions we make in life - pros and cons.
I've been overseeing my mom since my dad died in 2004 when she was 79. I tried to keep her in her house for as long as I could. I couldn't move her in with my husband and I as we lived in a small, two-story house with both bedrooms and bathrooms upstairs.
In 2014 she was diagnosed with Alzheimer's at the age of 89 and I had to move her into an ALF. It was very hard for all of us. Last April she nearly died from severe dehydration/UTI, COVID and bi-lateral pneumonia. After hospitalization and rehab, we moved her into a new facility into their MC wing. She has a private, small one-bedroom apartment and she told me she was comfortable there. I never thought I would hear those words. It's harder because of the pandemic but, I'm doing window visits.
What does your dad think of the move and how is your mom doing in MC.
You want to know if the pain will be with you forever - nothing lasts for forever.
Things are ever changing. You still are her caregiver, just not at home.
I hope you will give the situation a chance.
You will be in my thoughts and prayers - that God would ease your overwhelming pain and give you peace.
Big hug
"You are giving her the care she needs."
Yes, but in a different way - as an advocate and now, hopefully she'll be able to play more of a daughter role while the professionals who are trained to work with all types of dementia patients will give further care that her mom needs and will continue to need more and more of.
I think many of us feel like we abandoned them because we compare what they did for us to what we're doing for them. This won't be the case in all situations such as those who came from abusive and/or narcissistic homes but, for those whose parents took care of us. I think that's because we've been told it's just a role reversal when in fact the two are not alike.
If she was ill with pneumonia, she'd be in the hospital for managed care because it's out of my realm to provide her with that level of care. With moderately advanced dementia, incontinence and wheelchair bound, she's in Memory Care because because it's out of my realm to provide her with that level of care she requires. She needs a team of people working 24/7 to see to her chronic needs. I am her daughter, 1 person, not her caregiver, and manage her finances and the rest of her life from my desk and computer. Why should I beat myself up over that, it makes no sense. Just as I wouldn't beat myself up for Calling 911 to have her admitted to the hospital for acute care, I don't do it for getting her managed care for a chronic disease.
It's not abandonment, it's love and caring for all of us who have made the decision to do it. We've forfeited the "inheritance" which is being used for the best of care NOW, instead of being saved for the heirs to spend after the elders demise. That's what they saved and worked hard for: good care in their old age.
Please see a therapist who can help you work through the feelings of punishment you're doling out to yourself, and help you see things from a clearer viewpoint. Wishing you good luck and peace.
This is still fresh. It is different and, to be honest, it will take a long time to adjust. Just like it took a long time to “adjust” to living in the hell that caregiving can become.
The first couple of days after moving my MIL and FIL to memory care had us feeling like we had abandoned our children. It was pretty bad.
It sounds like you may need to be on guard for the phenomenon of selective memory. Please be gentle with yourself, but do take time to write down all.of.the.things that made you choose your screen name. I am SO glad that I had journaled at different points of the journey, especially toward the end. It was by no means consistent because of course, who has time to journal properly when they are caring for two people with dementia and homeschooling two kids and trying to maintain a house and friendships and a marriage and a business? And the two people with dementia were drowning out every other part of that life.
When my DH would start to wonder if we should have just placed his dad, or even after his dad passed and he started to wonder if we should bring his mom back again because she was “easy” (compared to his Alz VERY belligerent, aggressive dad), we would go through my notes.
Having something in black and white was so helpful when the selective memory would kick in - usually triggered by guilt. It helped us to remember that we were healing from an extended burnout as well and that there was no way we wanted to go back to before.
I strongly suggest that you refrain from ruminating in the feelings of sad and guilt. Instead, go for a walk. Talk to a friend on the phone without interruption. Take a nap. Leave the house without having to tell anyone or make sure someone is there to cover for you. Talk on the phone with a friend. Laugh. Hell, dance around the house like an idiot. Do these things BECAUSE YOU CAN.
You are reclaiming your life. And you are doing it in a healthy way. And you have made exactly the right decision for your parents. You are a rock star:)
If that is the case and you still have your dad with you, it will be harder. You are probably absorbing all of his sad into you.
Frankly, you may feel - on some level - like if you aren’t sad, then you look like a bad daughter. Especially, since your dad is there watching. This isn’t penance you have to pay, please remember that. Really examine what is driving the sadness. If it stem at all from what he thinks of you, try to let that go. Or get some help to let that go.
If he is upset and disapproving to you, well, that is on him. You need to remember that. Things are hard for both of you right now. This goes for mom as well.
Hopefully, that is not the case. But, just in case you need to hear it...
Your parents’ aging is not your fault.
Your parents’ situation is not your responsibility.
Your parents’ displeasure with the living arrangements that are necessary are misplaced.
You are not the queen of the universe. So...
You cannot fix your parents lives for them. You can, of course, love them. As long as you understand that those are not mutually inclusive things.
You have been kind enough to help and be there, and I can assure you, you have made a difference. Now, however, it is time for a change.
The reality of life is that it is all about change and rarely do things stay the same.
It is ok to experience some level of happiness that your mom is in care. This is not a betrayal. It simply means you value your life, just as she and your dad valued theirs over the course of their lifetimes.
Find peace in that knowledge.
Wishing you all of the good things...
Try to enjoy with her any times that are left and can be good. Protect yourself from the inevitable grief that is still to come. Look after her and yourself too. Love, Margaret
I also wonder how much of what you're feeling now comes from emotions you've kept a lid on so as to focus on caregiving. Maybe now that some of the pressure is off, those suppressed feelings are surfacing. If this idea resonates with you, then talk therapy might be helpful. If that's not an option, perhaps journaling. Write whatever you want, this is for you, not anyone else. And don't edit yourself, just let it flow.
Finally, there's some really good feedback here - take what works for you, if any, and leave the rest for now.
Sending you hugs ...
If however, you recognize that you had reached your limitations in giving 24/7 care in the home, and that was the reason you were forced to move your Mom into care with there being little or no choice, then you will need to understand that yes, there is good reason here to grieve and feel sad, but there is really no good option to "fix this".
There are many times in life that we have reasons to mourn things that cannot be fixed, that have no answer. Mourning is fine as long as you learn that you must also use the reasoning portion of your mind to form paths of "reasoning", not just feeling.
How we think, what we think, tends to become a habit, a trail we daily follow telling ourselves the same things over and over again, making the ruts deeper and deeper. We sometimes need forcibly to break the patterns.
Occasionally we are unable to break the habitual pattern and need to see someone, a psychologist or a Social Worker who deals with life changes counseling to help us comb through our feeling, the rational ones and the irrational.
Only you can answer the question of whether your OWN LIFE (your one and only life) would be better and happier by taking Mom back into your home, or whether you are adjusting now to what is real grief and loss.
I am so sorry for all the pain. We lose them, and yet they are still in front of us, suffering, and we are helpless against the pain of this. Not everything can be fixed. Some things have to be lived with. And we must go on. Forward is the only option.
You have done everything possible to care for your mom.
If we lived in an ideal world there would be no illness and people would die simply from natural causes or old age.
You have a huge heart and are obviously an empath. You give with your entire heart.
You mourn deeply as well. We all miss and grieve for the parents we had before their afflictions.
Please comfort yourself by knowing that she is well cared for and that you did as much as you possibly could.
You are still looking out for her best interest.
Don’t hesitate to speak to a therapist to work through your emotions.
I'm already on track with a therapist and I believe all of these feelings can be worked through and some are just the pain that comes with a separation like this.
Thank you again for all your help.
Glad you are moving forward and facing the "tsumami of emotions" (a very good description to say the least) one baby step at a time. All this didn't happen overnight and it won't be relieved overnight as much as we might want that.
I've always said when we vocalize something whether it's to another person(s) or out loud to ourselves, it's as if that in and of itself makes it more "real" and not just something in our heads. It takes strength to do what you're doing so I hope you can see that even though you may feel "weak."
You still have your mom, just not in the way your accustomed to and that's part of the grief. Believe me, I know because I'm there too! You are not alone - not by a long shot!!
Two of the kids have suggested I get therapy as they think it entirely possible and understandable that I’ve got a bit of PTSD so the suggestions here about therapy are probably spot on. Anyone I’ve told that I feel like I’m buying my freedom at his expense gives me a bunch of reasons I shouldn’t feel that way. But feelings are not always logical. My husband sundowns very badly. When he calls and is all upset about bad things that definitely didn’t happen, I remind myself that he was just as upset at home. Now he’s just upset somewhere else. And, God help me, I eventually block his calls for the night and tell the kids and his sister to do the same. I can usually talk him down, but within a few minutes he’s wound up again over the same false memory and it’s as if the previous conversation never happened. Then in the morning he’s in a good mood, with absolutely no memory of the previous night's craziness.
i completely understand your emotions as I’m struggling with similar feelings. We didn’t come to the decision to place our loved ones in care easily or haphazardly, but we’ll have to give our hearts time to catch up to our heads in this difficult decision. We’re going to have to re-learn how to live again and to do normal things without guilt.
Your words have much wisdom for people here, especially what you said about how long other people may last with a loved one at home being irrelevant. I sometimes think the mindset of “doing our best” can be paralyzing when it comes to dementia care. We know we *can* do more, but the balance has to be there and it is so hard to find that balance.
I have no words that can make this better for you and feel incredibly unequipped to even speak to your situation. But, I send you hugs and good thoughts. And, please know you are not buying your freedom at his expense. I would feel that way too, but as our own AlvaDeer often says so eloquently, it is a false guilt. Your love for him is evident. I wish you the best.
You probably are overwhelmed and exhausted, maybe depressed. Get as much rest as you can and pray she is well cared for. Take care of yourself.
Take one day at a time. Hopefully covid restriction will be relaxed some and you can visit more. Ask the nurses if they will help her facetime with you.
Love to you!
not perfect but it made it easier on everyone. I hope you are close enough to the facility that you can do this. Sounds like you are very close in heart with her so she would not want you to be so sad. You did not lose her she is still there. Enjoy your visits with her. You have done all you could and she knows. One day my mom took my hand and even though she could barely talk.. she put it to her heart and said "you are my heart". I will never forget it.
How are you adjusting? Thinking of you and hoping that you are doing better.
I moved my mom from Memory Care in one state to another during Covid, so I could see her more often and better take care of her needs. I wish that I had done it sooner, because I can see the difference in her behavior. She did have a fall during the night after she arrived. Frankly, I was glad that it wasn't under my watch and all I had to do was pick her up and take her to the ER. Give yourself some time to see her adjustment to the structure they can offer her. Just give her your love in any form that you feel will touch her (flowers, cards, music, pictures). You need to give yourself a break from guilt and know that love is what persuaded you to make this decision.
. You have been seeing the loss of the mother you knew through her memory loss. That is grieved for .
You realized that you are human and unable to be the everything to your mother although in your heart, you want to be ( that is love) That is being grieved for.
You know mom is not in the same place as Dad and you wish they were together with all your heart. That is grieved for.
And you miss her there with you. Seeing her everyday, you knew the care she received. Now in another place, there can be fear or doubt.
Life is ever changing and in aging, there is degeneration. That is grieved for.
Grief will work through and out. Your love is deep so your grief is deep.
Hugs and do know that in the future you will not question your decision now. You will see that it worked out. There will be positives that will confirm it.
Do the best you can and with care and compassion for your loved ones and yourself. When they are gone you can look back and know that you did the best you could.
Posts from others who kept journals, who could then look back when they were second-guessing their decisions were helpful. If you didn't keep a journal, you DO have your memories about how it was when she was still under your exclusive care. We may tend to romanticize the past and try to wash away the negative times, but you DO need to remember those.
There had to be good reason(s) for you to make the decision to move her. It will be hard, but hopefully soon with the vaccine being distributed there will be more opportunity to visit with your mom. Once that happens, you may be able to turn that corner and leave the doubts behind. Being able to visit with her, hopefully enjoyable visits without the drudge work of wiping, cleaning, bathing, etc, just the FUN parts of being together, might change your perspective. Once we reach our limit in ability to do a job, when it becomes beyond our ability to perform the necessities, it is time to seek help.
Perhaps now that you have more "time" on your hands, you feel like a failure. You are NOT. You've given it your all, perhaps MORE than that, and realized it is time to get help. Very often they will recommend not visiting for at least a week, sometimes two weeks, to allow adjustment. Most likely visits aren't allowed at the moment, which adds to your angst, but this will pass. Since the focus is on vaccines for the more vulnerable and care-givers, there should be some protection very soon for all of them. If you are up there, like some of us, you might be in the next group who are eligible. It will still take a few weeks for the vaccines to work on getting your body protected, but once you and they have been treated, you should be able to visit.
Once you can visit again, revel in how nice it is to sit and enjoy each other. Could you really enjoy time with your mother, when juggling all her care AND whatever you need to do on top of that? Now the care-giving part is removed and you WILL be able to share some good times with her.