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 My kids became stressed and withdrawn, not wanting to be around her...even though they love their gma.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.
Come to peace with your decision and support her as best as you can now, in this situation. Participate in visits, calls, cards, whatever you can do under the circumstances. She will be okay.
She would never have wanted to hurt you. Don’t hurt yourself. Do that for her. When you are feeling sad, draw one of your children close and give them a hug. They need you too.
They don’t understand or need to know they have dementia/Alzheimers. I would not even try to explain things. Being in a care home is the best at the stage you describe. Taking her out will cause so much confusion for her and it will only make things more difficult for her. Not only has the disease put her in her own world but the home is now also a part of her world and I would advise to let it be that way. When with her, try to be in her world. Agree with what she says, don’t try to change her thinking. I found with mom and now my husband I use to talk about the birds, trees, weather etc. With my husband I can not talk about much else because of his loss of memory, understanding and comprehension.
Enjoy the days you can be with her. Treasure every little minute. There will be days of funny things she says or does, times that will make you sad. But know she is getting the care that is needed. My heart is with you.
It sure sounds like you know placing your mom was the best way to take care of her and based on your description my guess is your mom prior to her disease progressing would never want to cause such emotional trauma to her grandchildren (or you for that matter) so would have wanted to be placed when it got to that point. Nothing to feel guilt about here so I wonder if what you are really experiencing is mourning. Mourning your independent mom, mourning your expectations of having mom live with you for the rest of her life, missing all those things you remember and expected about your mom and her aging. Guilt and mourning can often feel similar and I think we can confuse them. The mourning process is natural and has to happen, it’s important for you and for your family, in fact your kids might need to mourn too but don’t know how or don’t know it’s ok. Your ability to let yourself do this might help them as well and as you go through the process find the things to enjoy in it all which can only help your mom move through it too. People often say “meet them where they are” and if you can do that letting go of what you label “guilt” you can enjoy Mom, maybe even learn about some history you never knew.
COVID does change things of course and not being able to see her is probably especially hard on you but remember that being in the same place, surrounded by the same people is likely far easier on her than what you were doing even though both homes were familiar, asking to be picked up may have less to do with where she is physically than where she is mentally so don’t let that tug at you (I know easy to say). My mom has an Echo Show in her room and we use it to “drop in” on her throughout the day, it’s become so much a part of her life she often forgets that we aren’t actually in the room with her so from her perspective we are around all the time, she will have discussions about anything via the Echo watching our face as we converse now. Have you looked into anything like that? I know it makes me feel much better when she forgets and asked if I’d like a cup of tea, means she feels I’m there.
Consider what is under the layer of guilt - - - it is sadness, grief, fear.
Allow yourself to go to those feelings and really feel them.
Then. . . visualize, go to COMPASSION and GRATITUDE. What you have done is a form of compassion. Consider all that you feel gratitude / grateful for - the facility you found - the work you did to find it - loving memories.
The way to deal with guilt, or any feeling, I believe is to delve into it. Pushing it away makes it stronger and it stays until we allow it to 'be' -
If you are so inclined, start a journal about these concepts / qualities / feelings.
Or draw pictures, or make a collage. Whatever works for you to be with the feelings will support you to heal and get through them. There is something about being in present time. 'Bring yourself back to the present' - this quality of awareness is key to being with you/r self in the best of ways. Love yourself as if your mom was loving you. (She is). Visualize her giving you a hug and thanking you for all you do and did. Visualize / see or hear her say, "thank you, you have nothing to feel guilty about although I encourage you to process through it, my dear." She will support you NOW, if you allow her to be there with you. oxoxo. gg
Then March hit.. she had a small stroke and 3 mini strokes...she had been in great physical shape up until then...had to be in wheelchair, but with all of the in-house PT and OT... she can walk without a walker.. But of course in March.. COVID! Same thing. For a short period of time this summer, I could sit 6 ft apart but she can't understand why I couldn't hug her or come in.. Then lock-down came again, and it is horrible. I feel the same way. If she didn't have a balcony where I could stand and look up at her on 2nd floor.. I would't see her at all except I bought a facebook Portal and got that set up and at least when she talks with us she can see us ( you can add up to 2 -others to the conversation.--that has been great when nurse will call me for her)
When I drop something off or see her from a distance, I just go in the car and cry.. she is 87 and how alone she must feel. We have looked at all options, and she is getting excellent care from this Christian facility and participating in activities there which is better quality of life. I pray this covid situation passes on before my mother does. My heart feels for you as well.. All we can do is pray..
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.
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!
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.
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.
She transitioned to memory care after living in AL before Dad passed away. He did all her thinking for her (which was probably not a good thing long term.) She relied on him totally. She does not remember that he died, even though she was with him when it happened and attended his funeral.
At first she thought she was in a "hotel" and kept "packing" to go home. I'd find garbage bags with clothing and sometimes fresh food left on the counter to "take home." After months in memory care, and months of isolation due to COVID (there have been zero cases in her community,) she has a routine that's familiar to her and she kind of thinks of the familiar faces as "family." So she's settled down. But it took a while.
Don't feel guilty. She will not remember if you visit daily or monthly or yearly.
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.
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.
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.
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!
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.