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,
When we all think back on our lives, we can always say we could have done better....that is with today's knowledge, income, etc.
One day at a time. Will she pass away? Yes, we all will. As caregivers we can all get over whelmed. Take time for yourself. Admit when you need help. Follow professional advice for her care.
Express to her, your love for her and that will be in her heart forever!
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!
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.
I have two very good examples in my life that fit the situation that you are in now and I struggle with info I heard or read about later on. Much of which is on the internet but was not widely available at the time for one of my situations. The other situation concerns a medical procedure that just happened to fail, but advancement in just 4 short years could have prevented the failure.
I do question my decisions because of all of the research I have done since, but I also know in my heart that how I handled these...at the time...and with what I could do at the time...and what doctors said at the time... was based on what I thought was best. I can only hope when I meet these two again on the other side, they will know if I had known any other way to make them well, I would have done it to keep them with me longer than I had them.
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, slowly...in and out.
I’m only human and so are you.
God bless you for all you are doing and all you have done already.
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.
I don't have any experience with hallucinations with my mom,but I have seen the topic discussed here on this site. I think if you were to post it as a new question, you'd get many good responses and ideas.
Hugs!
So now you need a plan going forward. You are where you are right now. You can't change the past; all you can do is try to come up with a plan for the future that doesn't seem so bleak to you. I'm going to try and give you some ideas, see how they sound. Feel free to use them if you think they will help, or not if you don't...
In a moment of calm/peace, sit down and make up a list of ALL the things you do for grandma. And I mean everything, even the things that don't seem like they directly contribute to caregiving: cleaning, going grocery shopping, etc. If there are things on this side of the list that you feel are starting to overwhelm you, highlight/check them off. Do that on one side of the paper.
On the other side of the paper: make a list of ALL the things grandma MIGHT need in the future. Everything you can think of, even things that seem "worst case scenario". Then go over this half of the list and check/highlight anything you would be willing to do on a regular basis. And be objective. DO NOT start checking items out of guilt, or things that you would do once or twice in an emergency. I'm talking about day in/day out care.
Sleep on it. The next day, wake up and review it again and make any changes.
Then sit down with dad and give him this list. It MIGHT be he's not even aware of all that's being done or might need to be done.
You can have a calm, loving, adult to adult discussion with him. "Dad, this is what I do now. The things I checked off are the things I'm starting to struggle with doing. (Point to that side). This is where I see grandma's care going. The items I checked are the ONLY ones I am willing to take on additionally. (Point to the other side). What are we going to do about all the rest of the items? We need a plan that involves outside help"
Here's the hardest part of the equation: if he agrees to outside care, but doesn't actually go forward with making plans for it, you have to stick to your guns and NOT do those things you said you wouldn't. Trust me, that's harder done than said. But hopefully with "evidence" in front of him, your dad will get on board and get some outside help to come in.
Good luck!!! I'm rooting for you!
I definitely believe sharing these concerns and just having others knowing and rooting for me has caused this change in my father, and I'm so so so relieved that I can get more hands.
Now what's a bit difficult for me is my gran, last week Saturday I noticed she was talking to someone who was not there but she didnt open up about it but Tuesday was bad she was hallucinating the whole night and every day since but it keeps getting better/less and less, I've explained that I cant see these people anyway she has an appointment with her doctor next week so we'll get her tested for UTI so we can know for sure if its dementia or UTI.
But in the mean time does your mom ever hallucinate, what do you do or say when she does?
I'll do more research but a friend whose a nurse suggested that I just say, "they will leave dont worry you're safe" so this evening when she was asking me about a lady I just went along with it, and it just ended up being an utter mess. Because instead of her saying okay she started asking all these additional questions about who this person is and where they stay and when will they leave, and she even brought up the corona virus and how I'm bringing my friends over and they will infect us, I was so stumped, so I just confessed that I dont see anyone and explained UTI and medication and old age and how when we go to her doctor we will tell him what's going on and that shes safe and will be fine.
But I know going forward I have to have one response because me saying this and then that will confuse her even more.
Have you ever had to deal with a situation like this, what did you do?
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!!
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.
<3
You are too young to be trying this yourself. You are at the stage of your life that you should be having fun, out with friends, and planning your future. Caregiving for grandma will take the wind out of your sails.
Time for you to get on with your life. It will be hard, sounds like a cultural standard for you. It is time to move out, get your own place, maybe share an apartment with friends. You can do.it.
I think my biggest take away is, this is too much for me, I cant do it on my own so I have to communicate that and get extra hands. I think in the confines of our own minds its easy for things to seem so huge like there is no way out but its so nice to share and get ideas because it doesn't seem so daunting anymore and me making sure that I get help is not a bad thing, its necessary so I don't have to feel bad about it.
I guess I just really needed that to be validated.
But again, thank you for your concern and perspective it really does help.
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.
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.
<3
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!
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!
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.