Last night while I was struggling to sleep I came across a quote that said:

"Be kind to past versions of yourself that didn't know what you know now." And I wish I could be but I'm really struggling.

My gran had her first amputation last year in October and then again in February this year, now she's showing signs of dementia but I think it might also be UTI. There's so much I wish I could've done differently and I'm really struggling to see my past efforts as ''The best I could do at the time" I wish I was more nicer and empathetic and did more research and was more diligent and capable, but I guess I was also struggling to make sense of the situation because things were changing for me too.

I'm just trying to take it one day at a time, but I feel so afraid she will die and leave me feeling like I could've done better.

Please share thoughts and strategies that have helped you in those times when feelings of incompetence, failure and just struggling to feel like your best is good enough have creeped in.

Thank you,
Warm Regards,

Find Care & Housing
We could all write a chapter for the book of “things we should have done better” I could probably write several. Start with forgiveness, for yourself. Acknowledge your mistakes, give yourself forgiveness or ask for it from God, and resolve to move forward. None of us changes a single thing ever about the past, today and tomorrow are what’s important. Getting mired in what’s already done only makes today less productive, you’ll be less good to your grandmother today by being stuck on what’s already occurred. One thing for sure, your grandmother will die, we all do, it’s not an option for any of us, making it all the more important to move forward spending the time you have enjoying the now with her. And know that seeking therapy for you and more help for her are both good options. I wish you peace
Helpful Answer (11)
Reply to Daughterof1930
IssahN May 22, 2020
Thank you for your thoughts and you are right, looking and moving forward is also encouraged in the bible. And just being stuck in negative thoughts and fears just makes me so tired. Thank you for your timely and comforting thoughts. All the best for the day ahead.
One of the most important brain shifts I ever made for myself was that when we are caring for someone who was a viable living being for a long time and then became reduced in self care capacity by dementia, THERE ARE NO GOOD CHOICES.

As Gran becomes more dependent on you, you will need to makes the best choice of a bunch of all choices. And when you do that, as we all do, you will put guilt aside, figure out the best choice you have for her, and make that choice, based on love, compassion, and what she needs to remain as safe and as secure and as comfortable as you are humanly able to do.

It’s SO EASY to FIND life as a caregiver becoming overwhelmed with the beautiful memories of the times you spent with Gran when she was well, then returning to the realization that she is who she is today......and these memory trips are NOT HELPFUL to you or to her. Stay in her present. What is she able to do NOW, independently or with your input, that gives her satisfaction and contentment, is the best you can do for her.

GUILT. It’s an impediment, NOT a motivator, or encouraging, or improving one single solitary thing in her life, and DEFINITELY NOT in YOURS. We all feel it at one time or another, but you have a RESPONSIBILITY TO YOURSELF to stop it in its tracks by first acknowledge that you and everyone experiences it and the BEST CAREGIVERS corral it and MOVE FORWARD.

Good For You for asking for help. Now, place passed mistakes in the past,
as relics, and use your creativity to design future positive strategies for your LO AND FOR YOURSELF.

Trust me, you’ll find lots of them, and they’ll be much more useful than memories of what you could have done, and didn’t!
Helpful Answer (9)
Reply to AnnReid
Treeartist May 21, 2020
Great answer, Ann!
See 1 more reply
I'm so sorry you're going through this.

I've read your profile, and some of your responses, and you know, I have to say I'm a little annoyed with your dad in all this. You say he's "mellow" - I say passive-aggressive. I'll bet when you dip your toe in the water about getting some sort of outside help for grandma, he either 1) shrugs 2) makes non-committal noises 3) shuts down or 4) some version of these.

There's times to be mellow in life. But there are times when you have to grab the bull by the horns and be proactive. For the love of Pete, you say she's had surgery for at least one amputation! What is he waiting for? This is not a situation that's going to get better! As time goes by she's going to need more and more care - what is he thinking? He can foist it off on his daughter? So he doesn't have to be the bad guy and say "ma, it's time to talk about a care plan that involves non-family members who are professionals and better able to see to your needs." No wonder you're frustrated! And as far as you not having enough empathy for grandma, what about the other adults in the house having empathy for you? !?

Listen, I get the feeling of not being good enough (hence my board name)! I totally get it. I'm taking care of my mother, and, comparatively speaking from a caregiving point of view she's pretty easy. But I still get frustrated as heck with her, and I'm way older than you. I have come to realize that it's the situation I'm frustrated with, but since I tend to feel that way when she's right in front of me it comes across as being frustrated with her. Once I realized that, I was able to deflect my feelings somewhat. Don't get me wrong. I still get the feelings, and often I direct them in her direction, but sometimes I can catch myself and redirect the thought process.

But one thing I will not do, is expect my kids, both of whom still live at home, to "step up" and take on the lion's share of caregiving. Sure, sometimes they help out, but I make sure they know it is absolutely not their responsibility. And my mom feels the same way.

You've done nothing you need forgiveness for. In my opinion you've done more than anyone should expect a grandchild to do. Instead of feeling guilty about the things you feel you haven't done, feel awesome about the things you have done for your grandma! If no one else has said it to you, I will - your dad and grandma are lucky to have you!

Good luck! My best thoughts are with you!!
Helpful Answer (9)
Reply to notgoodenough
IssahN May 22, 2020
Hi Good Enough, thank you so much for your kind words they were like a sweet, warm oil being poured on my heart. And I am so grateful for your comfort and encouragement. This also needs to be printed out and re-read continuously. It feels so much better because I know it's coming from someone who really understands what I feel like and what I feel I'm going through right now.

You are right about my dad and family and I've been feeling very irritated with them lately and I think its because of what you're saying.. I just feel alone in this situation and on top of it it just feels like if something were to happen I'm the one who would get questioned - maybe this is a perceived fear and not the truth, but I am struggling with a lot of negative emotions and sometimes I feel fine but then it just comes all at once.

I don't know how to communicate this with my father though, because I know he is also dealing with the changes and stress and he is trying his best, its just the same with how I felt about my own efforts, its just not good enough. And as I read these comments and share my feelings more and more I'm really starting to see that the efforts are not good enough because we need extra hands. If we can have extra hands then what we are doing will be enough, its either that or I quit my job - which I can't do, so that just leaves us with getting outside help.

And it seems so obvious I just don't understand why my dad can't see it too. His response is exactly what you said, he shrugs and shuts down which makes me flare up and the conversation just goes no where and I'm left feeling frustrated again. I think its denial cause my gran is like your mom she is pretty easy and doesn't ask him for stuff so in his head everything is going okay.

I know everything will work out, but it's so nice to vent.

Thank you so much for your response, it was exactly what I needed to hear and just helped me feel so much better and so seen and heard and it just helped me a lot. Thank you.

IssahN, as a grandchild you are way too young to have this responsibility "assumed" onto you (even if you are in your 20's or 30's). It's not your imagination that you are feeling overwhelmed. You ARE doing the best possible, given the circumstances. Everyone who is not a professional caregiver has gone before you in this regard, to varying degrees of results (notice I didn't say "success", just results, outcomes).

The quote you included sounds nice but was probably written by someone who never was a de facto caregiver. Some things for you to ponder:
- everyone is mortal, everyone dies at some point, some sooner, some later.
- you are not "bound" by anything, not obligated, to provide the care. You are *way too young* to tie up your life in it, as it will only get more intense as your gramma declines. Even though you love your gramma, you are not the best person to provide the level of care she needs.
- it is the responsibility of EACH PERSON to realistically and adequately plan for their age-related care. Adults are perfectly capable of doing this and choose not to. As I said above, no one gets out of here alive. Everyone knows this.
- for some problems there are just no perfect (or even good) solutions.

Sometimes people slide into, or are slid by others, into caregiving roles. I'm the granddaughter of immigrants. The generation above me is appalled that I was considering transitioning my 2 unmarried, childless aunts into a care community.

There may be many reasons your father isn't transitioning your gramma into a care community:
- tradition
-F.O.G. (fear, obligation, guilt)
- language barrier
- money
- her expectations/resistance to change
- you are a convenient and cheap alternative that satisfies all of the above

I strongly encourage you to come to peace with the fact that you cannot provide enough care for her no matter how much you want to, therefore your father must help solve this problem.

If you could provide more details about your situation, it would help the forum support you with insights, information, resources, and guidance on next steps. I wish you all the best -- give us more info and progress reports: we are here to help you!
Helpful Answer (7)
Reply to Geaton777
IssahN May 22, 2020
I am literally crying right now because this is exactly what I feel. Its as if you just said out loud what I was thinking.

And I don't know if its denial or maybe it's the reasons that you've mentioned above but my gran does not want outside help and my dad, I don't know but when I bring it up he is so nonchalant. And my grans niece is way older than me and unemployed, she is a sweet, hard working lady and whenever we would visit them everything was so neat and clean and I feel like she would be the best person to come and help out when my dad and I are at work, but both my dad and my gran are not open to that. I feel frustrated because there is so much my gran needs emotionally and physically and I just cant provide all of that while working full time and having to do the household chores.

I think I really do need to have a conversation with my dad and try to not be all emotional when I do, when you had to talk to your family about moving your aunts to a care facility, how did you prepare yourself and how did you go about expressing your thoughts and ideas? Also what do you wish you couldve maybe done that you didnt then?

I think I just need to be less emotional and just be brave and sit down with him and discuss this, we do get along well and he is a good man but I wont say we have a open communication type of relationship.
As a grandchild, your 'responsibilities' for caring for an elder are MUCH different than those of a child to parent.

Do NOT beat yourself up over what you may have done differently. I am a grandparent and MY expectations from my grands are pretty low-bar. They are mostly pretty young and at this state of the game, I just enjoy them and the cuddles (from the littles) to shopping trips and fun talks with the tweens. I don't expect, as I age, for my grands to be involved in my care at all. I really don't even expect my KIDS to do much.

All your grandma wants is some time with you and to know you love her. Asking my sweet g-ma once, what could I possibly do for her to repay her unconditional love to me and she said "Be good to others, watch out for your kiddies and their kiddies".

I don't think she was trying to be saint like. She was just right.
Helpful Answer (6)
Reply to Midkid58
IssahN May 22, 2020
I love my father so much but he is such a mellow guy and my uncle lives with his family and he cares for his mother but I can't say he is helping in any concrete way. My gran only has these two sons and I'm telling you if I don't take charge nothing will happen. And with how society is set up if there's any ''neglect" seen, I will be the one who is looked at because I'm the female in this dynamic therefore I must handle the household. I'm not complaining, its just I wish someone would intervene and help out but I know if I don't put any measures in place or get someone, nothing is going to happen. So yah I wish my responsibilities were more grandchild like but I feel like they aren't.

But I appreciate your comment and I'll really take it to heart, I thnk right now I'm just frustrated with the situation so my outlook is focusing a bit more on the negatives but I'm working on changing my perspective and energy and I know as I do that my gran and I will relate more.

Thanks for listening though.

Where is your Dad in all of this. He should be doing the bulk of the caregiving and should be helping around the house.
Helpful Answer (4)
Reply to JoAnn29
IssahN May 22, 2020
I love my father so much but he is such a mellow guy and my uncle lives with his family and he cares for his mother but I can't say he is helping in any concrete way. My gran only has these two sons and I'm telling you if I don't take charge nothing will happen. And with how society is set up if there's any ''neglect" seen, I will be the one who is looked at because I'm the female in this dynamic therefore I must handle the household. I'm not complaining, its just I wish someone would intervene and help out but I know if I don't put any measures in place or get someone, nothing is going to happen. So yah I wish my responsibilities were more grandchild like but I feel like they aren't. Also to my dad's defense he has a business and is more hands on when it comes to fixing the house etc, he isn't the type who cleans he shows his love and care in other ways. And I'm starting to see that my gran just needs a more nurturer type of role to be played right now.
I am an RN with a lot of experience in critical care. Let me share a little of my experiences with patients. I have had patients that we provided letter perfect care to - who ended up having poor outcomes. It was nobody's fault that their bodies, minds, choices... did not lead to better health. I have also cared for patients that mistakes have been made - every care provider is human and we are never perfect. Some of those mistakes should have lead to terrible outcomes, but those folks actually thrived and walked out of the hospital, despite the mistakes.

I have come to see that my responsibility is to provide quality care and to leave the results in God's hands. I try to provide a good environment for health or healing, but only God can make bodies heal.
Helpful Answer (4)
Reply to Taarna

For me, I’m still accepting that the past is the past, you can’t change it. What you can change is the way you move forward today and tomorrow.

I feel so much guilt for a lot of different things. I also feel I’m not allowed to feel stressed or burned out because I’m the one that decided to do this all by myself. Quit my job (that I loved) and be my mom’s full time caregiver (whom I love more)...that’s 24/7 with no breaks for myself at all.

I have doubts too at times, should I have not quit my job and hired a full time caregiver instead? (that would have been about 12 hours per day Monday thru Friday) and that caregiver would have cost more than my weekly paycheck! Or pay for an Adult Day Care and a part time caregiver? That could have been possible...but then while I’m at work the constant worry of a stranger picking up my mom and doing things with her...Or maybe not, treating her great or maybe not? So I’m in financial worry.

I’m struggling with my physical abilities during the day bc my mom gets up to urinate throughout the night and it’s extremely tough to get her back to sleep which = no sleep for me either.

I’m struggling with my self emotionally because watching my mom deteriorate before my eyes everyday is one of the toughest things I have to endure.

I’m struggling mentally as well, why is this happening to her, why me? It’s all out of my control and hers as well.

I’ve researched and read all about Vascular Dementia (which is what the Neurologist states my mom has) but it still wasn’t enough. Went over & over her MRI results on her Multiple Strokes and the different parts of her brain that are affected. One part was Occipital - she has field vision loss, the guilt I feel now, when before I used to get mad when she bumped into things, it wasn’t because she’s clumsy but because just doesn’t see them! Another part of her brain that was damaged was sensation & pain, now I understand why it’s so dramatic every morning when I need to test her sugar because she does feel way more pain than it really is. Another part of her brain that was damaged was reasoning & judgement, can’t tell the difference between a commercial and show, when I ask what do you want for dinner? chicken or fish, she’ll just repeat chicken or fish, What crayon color do you want red or blue, she’ll repeat red or blue, is unable to decide (this is with anything). And some memory issues more with remembering what I just said now vs remembering the past. There are great days and not so great days.

How I try to deal with it all; daily exercise and eating healthy for the both of us, fresh air outside tho we are limited to going out to places bc of Pandemic now. Arts & Crafts keeps both our minds busy, music playing gently in the background. Get washed and dressed up everyday even if not leaving the house. Message her when she feels a cramp, brush her hair, hug & kiss her. Dance. Always Dance. Even when seated;) Prayers before bed.
And sometimes just breathe, and out.
I’m only human and so are you.

God bless you for all you are doing and all you have done already.
Helpful Answer (4)
Reply to Dollie1974
RedVanAnnie May 24, 2020
Your first sentence/paragraph says it all. One can only go forward from here.
There is an Essay by Robert Hastings titled The Station that I love and one of the lines in the essay is...
It isn't the burdens of today that drive men mad. Rather it is the regret over yesterday or fear of tomorrow. Regret and Fear are twin thieves who wold rob us of today.

Look back if you must
But do not second guess yourself.
Given the information you have you are making the best choice possible.
Can you honestly say that you would make a poor choice when it comes to anyone's care? A parent makes the best choice when making decisions for their child, as caregivers we make choices based on what we know of our loved one and what they would want.

As a human we sometimes doubt our choices. Don't doubt.

She will die, no one lives forever. The best thing you can do is make sure she is well cared for, well loved, not in pain.
And I have to add this..simply because it is me ..
Have you consulted Hospice to see if she is eligible?
With Hospice you will have a team of people that will help you and guide you.
A Nurse will check on her weekly.
A CNA will come in a few times a week to help bathe, dress, change bedding, order supplies.
A Social Worker that you can talk to about what's going on with you, the family and grandma.
There are others on the team and they are all there to help you and the family.
There are 2 types of Hospice For Profit and Not for Profit. The one I chose was Not for Profit and I could not have been more pleased. They helped me care for my Husband for almost 3 years. I could not have done it without them (and the VA)

Rest easy you are doing a good job!
Helpful Answer (4)
Reply to Grandma1954

My heart goes out to you, (((HUGS)))
Others have given you such good advice that I have nothing to add except this is not your responsibility. It sounds like your Dad is just letting you do it all. Easy for him isn't it? Your Grandma could live years or not. You need to start either getting a lot more help or disentangling yourself.
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Reply to MaryKathleen

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