Writing from a different perspective...will this ever get better?

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Writing from a different perspective...will this ever get better?

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My mom bless her heart was as good as they come but when she was diagnosed with lung cancer she chose to not treat it .Eventually the cancer caused dementia. Her personality would change minute to minute. Evil to good. I took care of her as long as I could but she started doing things like escaping the house.. and yes once even finding her keys and driving her dogs in the car topless while my stepdad was in denial. All of these things kept happening and it broke my heart to put her in memory care. We tried 3 before we got it to an okay this will work. Mom was a country girl so she at least needed a place where she could walk around and get outside. At first I would go every day and every time I had to leave she would cry and so would I. The staff suggested that I do not come as often but I could not do that. So I compromised. I went every other day. I made it simple one day for me and my family the next day for mom. It was
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.

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I hope at least you were able to laugh about that topless drive. (:

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This whole situation is very hard and highly emotional. I know you wanted only the best for your mom but we can only do so much.
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!

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before covid struck, some close families regularly came and spent regularly scheduled mealtime sith their parent...some helped feed them. I thing that gave parents and children ease the burden that you are still feeling. if you plan mealtime a few times a week your will quickly see if you made the right decision by how her health and demeanor is. one husband stayed with his wife all day and went home in the evenings. hopefully once your father gets both shots he will be able to spend some quality time with mom before its too late.

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Is the assisted living facility your mom is in on lockdown? Because most are still keeping the residents isolated from family. I would say based on the current situation it’s best to avoid placing anyone in a facility where you won’t be able to visit and care for them in person. Could you hire some additional in-home help to take the burden off of you? My mom was neglected in assisted-living last year once the lockdown started and passed away due to severe malnutrition. They basically never noticed that she had stopped eating. My dad was in a nursing home and I went up against my whole family who thought he should stay there but he came home with me in August and he died January 4. It was the best thing I ever did bringing him home.

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Every facility is different and even during COVID sometimes people have to move their loved ones into one. It’s a hard decision but sometimes there is no way around it.

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My heart goes out to you. All is so overwhelming. But, it will get better, I promise you. As you see your Mother adjusting to the new situation, as you interact with her caregivers and learn how they are giving her good care, you will feel better. Our family experienced this after a life time of my MIL exacting promises from her children that they would always care for her with nursing home option never to be considered. But like us, you will be able to still be engaged in her care, just in a different way. Give yourself some transition time. Love remains even when circumstances change. Sending you a big hug.

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Just remember that every choice you’ve made is out of love - of what you think is best for your mom at a particular period of time. This is a very difficult journey for person and caregivers. Talking to a therapist (and good friends) helped me with the feelings of guilt and sadness. My husband is now under hospice care in a NH and I still think about bringing him home, but I know I couldn’t provide the level of care he needs. Depending upon outside caregivers coming into your house brings another level of stress - will they show up, will they be late, will they be effective. COVID restrictions hasn’t helped any of us on this journey. HUGS

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Such good advice here, especially from HopeFloats. I, too, am struggling with the tsunami of emotions over placing my husband in a small care home a little over a week ago. The advice about keeping a journal is excellent. I had started one years ago. Entries in the early days were sporadic and became much more frequent as my DH’s poor mind devolved. Reading old entries has helped me see just how long I’ve been doing this and to remember how badly the stress was affecting me. I almost brought him home the other day. Reading old entries helped me see what a mistake that would be. I’m not superwoman. Others may be able to do more and last longer than I did, but that’s irrelevant. Lots of people do lots of things better than I can. They run faster, write better, cook better, etc. We each can only do as well as we can for as long as we can. Making peace with whatever that may be is the tricky part. I’m working on it.

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.

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My heart goes out to you. So many of us have experience with parents... caregiving for a spouse/having to place a spouse is so very much worse.

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.

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Oh bless your great big heart! I went through this when I placed my dad. I could not give him the care he needed by myself. I left my own job and family to care for him... more and more incidents were occurring. He refused to move near me and my family. Though there was relief that he was “safer”... the move triggered so many emotions. Your mind is cleansing itself... at least that’s what a doctor told me. I could not stop crying, either. Let the tears flow. You will get through this. You are in a safe space on this forum!

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Your Mother is now safe, warm, dry, well-fed and you finally have time to yourself. Get a hobby !! And stop worrying !! Love, peace and good thoughts.

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I am so sorry...I did this in April of last year...I dropped mom off on the curb during the height of covid pandemic and drove away...and then had to have blind trust in staff I did not know..It turned out to be wonderful..yes I cried for 4 months!! She has been 30 minutes from my home.. we do 3 zoom calls weekly...I sat in my car outside her window chatting..I made posters of love...brought her favorite fruit weekly..Mom now is so stable { she has Lewy Body Dementia} ...that I can move here to a regular assisited living 5 min from me...she is walking better and is outgoing again..they added so much to her life.. this really turned out well..the staff adores her. Our move is 2/25...DO not lose hope! God is good. A good memory care can help her be her best even with the dementia. My mom barely knew us, could not walk in and had horrible hallucinations. She had lost weight and refused to eat. Now she is strong, laughing and wanting a move near me..she still has dementia but it is much improved.

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I’m curious, Sadi roanokeva, if your mom is so happy, “doing so well,” and the staff “adores her,” why are you moving her again?? Was this a medically necessary treatment center? I’m still learning.

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Dear "ExhaustedOne,"

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!!

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Thank you all for your kind words, amazing advice and sharing your experiences with me about this. I recently read an article about this and the writer discussed this very thing, the unexpected "tsunami of emotions" that followed placing her LO in a memory care home. It was necessary. It hurts and somehow, her living away from home makes her dementia and situation more real. So, there is a real feeling of permanent loss as she assimilates and gets used to her new home.

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.

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Usually I don't think I know how another person feels, but I think I do know how you feel. I moved my mom this week from an assisted living facility in my neighborhood to memory care in another city. I had cared for her for over 8 years in her home, lived with her for 4 of those years. When she was in assisted living I could walk over and see her just about every day, even in covid restrictions for window visits. Memory care is necessary now because she was seeking exits in the middle of the night. I cried for the 3 weeks of looking for the right place for her, and now still cry about her being so far away. Of course I do. She's been the main focus of my life for over 10 years, even in assisted living. When I leave my house for a walk now, I'm not going to stop to see her. She's an hour away. There were no good options in my city that were affordable. She is confused, but settling in to her new place already. I think it will take longer for me to adjust.

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You're feeling loss and grieving. It is natural to feel overwhelmed by grief. Grief does go through stages and it will eventually heal. I try to focus on loving memories to help me get through the pain.

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I don’t see how you have any other choice.

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.

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If you feel a billion times worse with your mother in care than you felt with your mother at home I would suggest you consider moving your mother back and continue your care giving.
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.

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Your note struck such a chord for me. The reminder that not everything can be fixed and that sometimes pain and suffering are part of life. I forget that quite often. And my skills to manage that fact get clouded by a lot of emotion. Thank you for reminding me of that. And that this is real grief and loss going on.

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Caregiving 24/7 takes a toll on anyone - mentally and physically. It sounds like you are depleted, which makes coping with emotions more difficult. Rest as much as possible, your body needs it.

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 ...

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Dear Exhausted One, every step in this saga is difficult. If you feel so bad now, how will you feel when she dies? How would you have felt if she died while she was still ‘at home’, from something that might not have happened if she was in 24 hour care? Sometimes the grief of sudden death is easier, because it gets the grief of every step over in one.

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

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She also has to ask herself how she’ll feel if her mother dies in assisted-living all alone. That’s happening everywhere. Especially if anybody tests positive for Covid you’ll never get near them. I had so many years of experience in various nursing homes and assisted living facilities with my parents and there was so much neglect and lack of care that I’m just amazed people on this thread somehow have this rose colored view of how these facilities work. During Covid it’s been worse than ever. Join a Facebook group about people that have loved ones in these facilities right now and your eyes will open to the majority facing an absolute nightmare for the past year.

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I just re-read your post. It looks like you may have only placed your mom?

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...

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What your feeling isn’t really worse... the reason it feels so bad is that it is more acute.

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:)

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I have my mother in Memory Care Assisted Living. She's been there for about 18 months after transferring over from the regular Assisted Living building she was at since 2015.

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.

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Do you feel like you are abandoning her? If so, this is not so. You are giving her the care she needs. It's hard at first. Please reach out to a therapist to help sort things out for your own peace of mind.

Big hug

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"Lvnsm1826,"

"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.

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Dear "ExhaustedOne,"

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.

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Please seek therapy during this time. Most if not all therapists are doing virtual visits due to the pandemic.

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Writing from a different perspective...will this ever get better?

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