Follow
Share

We have taken care of my mom for the last few years after my dad passed. Her delusions came on all of a sudden. That led us to getting parathyroids removed to lower calcium levels, her getting though a TIA, and eventually a pace maker. Her primary kept saying she'd get better after each event. However, she did not. Now they are saying she probably has vascular dementia. Either way, her short term memory has worsened. She has such grand "dreams" or hallucinations that we can't convince her otherwise. She has always been very intelligent, caring, funny, sassy, and independent. That's why it's been so hard to see her become so confused, not keeping up with things, and coming up with some grand scenarios she feels is real. She can get argumentative, non-trusting, not realizing all we're doing for her. My son lost 40 lbs due to her comments when he was a bit chunkier. My kids became stressed and withdrawn, not wanting to be around her...even though they love their gma. I became so occupied taking care of my mom, I felt I had no more to give to my family. She was staying with us in the evenings. I would drop her off at her house on my way to work, and then pick her back up to go home with us. She was so confused her own pretend world at her house. She made up a baby me. She'd think she saw a baby in the house, but then when she'd go check, she'd panic. Her neighbor would watch her go around the house looking for the baby throughout the day. We knew she could no longer be by herself at her house of 60 years any longer. In home care is too expensive. We chose MC, and it's at a great facility. My mom made it through quarantine! I get to see her today, outside, 6ft apart, and with a mask. There's been good days and bad days with her being there. She's laughing one minute, and then the next she's wanting me to pick her up. I deal with wanting to rescue her and pick her up every day! I feel guilt and grief every day. I know we've made the safe decision, but it's so hard to not see her everyday with this dumb COVID! She doesn't understand how bad she is mentally. I wonder with colder weather coming, if we won't be able to visit. How are we to handle the holidays? This could be her last holidays, and I would probably take her out for a month just to have her go back in for quarantine. I couldn't live with myself keeping her in there by herself during the holidays. I also wrestle with...my mom took care of me all those years, then I should take care of her. Since I'm a Christian, I should take up my cross and die to my self during this season. I saw this video with a snake trying to eat a rather large snail. The snail kept creeping back up while the snake kept trying to swallow...that's how I feel about the guilt. Anybody else going through this during the COVID? It would be different I could visit everyday.

Find Care & Housing
Marcy, are your children going to be able to say the same thing? Because according to your own words, you have nothing left to give your family because you were caring for your mom. Her words have damaged your children, even though they love her.

I am sorry that your mom has this terrible disease, but your family doesn't deserve to lose anymore of their wellbeing to her disease. Let the professionals handle her care and you visit as Covid restrictions allow.
Helpful Answer (11)
Reply to Isthisrealyreal
Report
marcykong Aug 21, 2020
Yes, good point...no more loss on top of loss.
(1)
Report
You did the right thing.

You own family must come first...I see my YB caring for my mother in his home and trying to not neglect his wife and kids and he's failing..and knows it.

A promise made to never put a LO in a 'home'--when they were healthy, is a piecrust promise. Easily made, easily broken. I think parents are selfish to expect their kids to care for them for what often turns into YEARS.

My mom took care of me for about 8 years. Then I was kind of on my own. By 12 I was making all my own money and by 16 I was helping to support the family, by working for my dad's business. I got paid about $1 an hour and mom and dad took the rest for the family. By 19 she was actively trying to get me to marry and get out of the house. So that "well she raised me, I owe her', to me is a total joke. She was not there for me, in good times nor bad, and sadly, that has come back to bite her. She should never have had kids, but had 6.

I am also Christian and have had to learnt to forgive her for what she was incapable of doing. I will not nail myself to a cross for her--to what end? My responsibilities are to MY kids and DH and grandkids.

This probably is mom's last year on earth, but we've been here before, many times. She keeps rebounding.

Your mom is where she belongs. She sounds healthy and happy. I highly doubt she even knows what day it is, much less how long it has been since your last visit. Be kinder to yourself. You are putting mom's perceived needs/wants ahead of your ACTUAL needs and wants.

It's OK to say 'I did the best I could. Let go and let God.'

No one lives forever and guilt is a wasted emotion when it comes to elder care. We will inevitably have good and bad days. Rolled all together and we have life.

COVID has made things weird, but it is what it is.

Why would you visit every single day? Does mom even remember? Out yourself in your family's shoes and see how they feel. When caring for my FIL at his EOL my 2 teen daughters were VERY upset at the amt of time I gave him and felt that THEY needed me more. It was a rough time. Looking back, we should have out him in a LTC facility.

I realize I sound mean, and I don't mean to. I just have been where you are and I know from past experience that guilt is a total waste of energy.

You did the best you could. You still are. Don't take mom back home. Roll with the 'punches' of life as she enters the twilight of her life and seek for some calm. I'm sorry you're struggling with your decision to place her.
Helpful Answer (6)
Reply to Midkid58
Report
marcykong Aug 20, 2020
Thanks, I need to hear these things.
(1)
Report
See 1 more reply
You did what is best for Mom and your kids. Dying to ourselves doesn't mean suffering, misery, and allowing ourselves to be trampled upon. It bugs me when Christians (I am one) go into martyr mode. And it's the women, the ones taking care of everything and everyone. Spouse, kids, older parents, pets, job, house, bills, all of it. For years and years. When they inevitably begin breaking down, they keep on running themselves into the ground. Because "This is my cross to bear. Everyone else is above me. I am here to serve everyone. Everyone has to be happy and well. I don't, because I don't deserve to." It's sad and is not how God planned it. We are here to live life more abundantly! If you choose to live with unmerited guilt and think you're just a selfish turd, then... what was the point of Salvation? You're still miserable!

Yes, we are to humble ourselves in the sight of the Lord. Yes, we are supposed to love others. But I do not believe we are meant to feel like dirt. "Love your neighbor as thyself"... see? You have to love yourself too! And you don't heap blame and guilt on those you love.

Guilt is for when you did something wrong, and you haven't. Was your mother happy looking for her "baby" at home? Was it easy for her to sleep in one house and live in another? Was she happy insisting her delusions are real and you're all doubting her (because it is frustrating to explain things to people when you KNOW something is right or real, and they say it isn't!).

You have no clue if this is her last holiday. Or anyone's last holiday. Plus that is 4 months away... in her new environment she can become stronger! I know Covid may mess up holiday visits if it's still an issue... but other than that, most places allow families to visit and bring the party to them. You're just going to her 'house' now.

As far as taking her home for a month, please don't. You mean well but this isn't good for her. It would throw off her entire routine and she'd have to re-adjust. Plus what if she is upset when you take her back? Don't do that to her. We had to stop taking my husband's grandma out even for lunch. She would get so confused when we took her back, and it would take days for her to re-acclimate. We meant well too, but were doing more harm than good.

You'll need to see this as her home now. It is where she lives. She's not being warehoused or shuffled to another place. Treat it as if she'd sold her home and moved into there. Visiting every day might make YOU feel better, but it's not always the best for those living there. She's fine. They would call you if she wasn't.

If you were selfish, mean and uncaring, you'd have let her just get worse at her house. You wouldn't care where she ended up. Wouldn't care how she feels. That is not who you are. You know it, Mom knows it, and God knows it!
Helpful Answer (6)
Reply to LoopyLoo
Report
marcykong Aug 20, 2020
Thanks, you made some good points to consider.
(1)
Report
”If in Life You Do Your Best,
God, With Love, Will Do the Rest”.

I love this little poem, because it sums up so perfectly what life is like when we are learning to become the caregiver to someone whom we love so dearly.

You have found a lovely, cozy place for her, you can stop by frequently, you are living a peaceful life with your husband and children, AND you have made the impossibly difficult decisions that must be made as the child becomes the parent and the cherished parent becomes the cared for child.

The pain at first as you experience this is almost overwhelming but..... one day you enter her area and find her sitting quietly enjoying something happening around her, or eating a cookie and SAVORING it, or smiling at one of her caregivers or fellow residents, and you begin to realize that she is in a place of safety and comfort and hopefully, peace.

”Guilt” is a wasted and self damaging emotion. You are experiencing loss, and you feel sorrow. Understandable. You have experienced the poignant and often troubled attempts for young people to deal with their responses to a loved grandparent experiencing cognitive loss. You have shown your children that all stories don’t have happy endings. You are treating ALL of the people in your family in a respectful, loving way. No “guilt needed”. None.
Helpful Answer (6)
Reply to AnnReid
Report
marcykong Aug 20, 2020
That is a good poem, thanks!
(0)
Report
You got her the care she needed and you could not provide. You have saved her life by keeping her safe 24/7 with caregivers that can safeguard her health. I would say you have done and great job and you visit her regularly which is fantastic.

Guilt and shame are tools of the Enemy. He uses them to try to convince you that your have done something wrong. You have not. When those thoughts intrude, remind yourself that you are helping your mom, that you love her, and this is best for everybody involved... Prayer might also come in handy.
Helpful Answer (6)
Reply to Taarna
Report
marcykong Aug 21, 2020
Yes, prayer and laying everything down at the feet of Jesus. Thanks.
(2)
Report
Guilt is for felons who murder with malice aforethought. You are mistaking the GRIEF of there being no good answer to this, and if you are on the forum at all you KNOW there is no good answer. Not everything can be fixed. I heard an interesting NPR program about mourning, and some of the worst mourning is done when our elder is still alive, but not who they once were. Guilt can be often used to prevent going to GRIEF, because with guilt there is the insinuation that something can be fixed. The snail can be saved. And when you go to grief, you know that nothing but time can take the sharp edges from what is pure grief.
I am so sorry. Do you need the Eagle story from me now?
There is a terrible deluge and a father eagle is trying to save his chicks from that water rising on the tree on his island. He takes an eaglet from the nest, and starts over the raging waters carrying it in his talons. He asks the chick "When I am aged and infirm will you alike carry me over the raging waters?" The chick answers his father "Yes, father, surely I will" and the eagle drops the chick at once into the raging waters where it will surely perish, returning through the storm to his last baby shivering in the nest. He takes this baby in his talons and begins again through the winds across the raging storm tossed waters. He asks his second and last chick "And when I am old and infirm will you like save me from the raging storms" and this chick says "Oh, my father, I so wish I could. But I can promise you THIS. I will risk my life to save my OWN chicks from the storm."
So woman, save your chicks from the storm to the best of your ability. It is what is meant to happen. I am no christian, and am in fact an atheist. Yet when my bro fell ill I said to myself for one bright shining moment "If you were worth anything at all you would give up your life and move in with your brother and care for him the rest of his life; he's the best man you have ever known.". As I said. Brief. Shining. And then I moved on doing the best I could, feeling every second of grief, walking that awful forest the best I could with him, Hansel and Gretel hand in hand, but no, not living together.
It's grief. You aren't a felon. You aren't a Saint. Your God doesn't likely want any more Saints. Heaven is full of them, THEY are full of arrow and trying to answer the prayers of us all for eternity. What a job description.
Hugs and heart and love out to you. I am so sorry for the GRIEF and for the pain.
Helpful Answer (5)
Reply to AlvaDeer
Report
marcykong Aug 21, 2020
Sorry about your brother. I like that eagle story, thanks.
(0)
Report
What is most important is that you are taking care of her by finding Memory Care for her, and you also took care of yourself and the family members who were starting to be the brunt of her stream of consciousness. There's some part of a normal brain that uses good sense to not insult people, and that part is probably going haywire during dementia.
I'm sure all of us who check in here are upset about not seeing our parents during COVID 19. My mom tested negative twice, but honestly, waving at her through a window is not satisfying in the least to me.
We family members are not equipped to take care of our parents once they are living 'in the moment' with dementia. If you have a family member who gets sick, you can take care of them and they get better, but with dementia, they do not get better. They do go through stages which as far as I can tell, are impossible to predict.
Don't start worrying about if this is the last this or that, that's really pointless. You do not need to rescue her. She is safe where she is. You did the right thing. You can and will continue to feel your feelings about this, but you can release the guilt right now. There's absolutely nothing to be guilty about. Your mom is safe, you have your life back. Stay in the present moment, the way she does, and meet her there, in the present.
Helpful Answer (5)
Reply to Rabanette
Report
marcykong Aug 21, 2020
Thanks!
(0)
Report
"It would be different if I could visit every day" That is a very powerful statement! We need to accept things the way they are, and you cannot visit your mom every day, just like so many others cannot visit their loved ones every day.

You sound like a very caring and loving person, and I would like to suggest that you accept the situation the way it is and accept that you cannot do a perfect job - no one can!

Many memory-impaired folks have a difficult time distinguishing reality from fantasy - is it really that bad that she has a fantasy life if it does not hurt herself or anyone else? Is it really that bad if she thinks she is a princess so long as she is not angry that she is not being treated like a princess? Delusions of grandeur are not bad in and of themselves, it is the result of those delusions that could be bad, but your mom seems to be fairly happy.

You said you would probably bring her home for a month. Is that really wise? What if she decides she does not want to return? That is a very real possibility, and you need to be prepared for it.

Also, you seem to be an excellent child, so I am really thinking that perhaps a therapist can help you see that you are, indeed, a good child and doing more than necessary - the guilt you feel seems to be misplaced - you shouldn't feel guilty when you love so much!
Helpful Answer (4)
Reply to anrean
Report

Please check with administration at her facility prior to the holidays regarding their rules (particularly during Covid) surrounding bringing a loved one home for a month. Will they definitely allow her to return? Will she have to quarantine and for how long? In my opinion, the isolation of being under quarantine can be devastating for those with dementia. Also, even if you get answers to all these questions and take her home for a month, what if their rules change (possibly due to Covid) while she is home with you? Lots of uncertainty — really think through that idea.

Also, I think a month away from her facility (routine, etc.) could be more detrimental than good. Maybe just take her home for the day of the holiday?

Best wishes to you.
Helpful Answer (4)
Reply to PAH321
Report

I feel the same way. My husband is in a nursing home under hospice care with late stage EOA. Because of covid, my visits are about once every three weeks (since end of June) and what were once twice a week FaceTime calls are now very sporadic. I think of bringing him home with 24 hr care, but then I think about what happens when a cna doesn’t show up, he needs a Hoyer lift and a Broder chair - will he be able to be showered, what if he has another blood clot and needs oxygen immediately? After these thoughts, I know he’s in the best place for the care he needs, but it is very hard not to be there to provide comfort. It sounds like you made the best decision for your mom and family. I pray to be able to accept the things I cannot change, but it is very difficult. Best wishes to you and your family on this heart breaking journey called dementia.
Helpful Answer (4)
Reply to Franklin2011
Report

See All Answers
Ask a Question
Subscribe to
Our Newsletter