Guilt
This cannot be a new subject, although a quick search didn't yield what I was looking for. I am 84, have leukemia. My DH is in ES to MS ALZ and is 89. Several of our children have been doing research on new treatments to slow this down. At least once a week, I'll get a text . or a phone call …"Mom, I read about…" I makes me feel guilty that I am not bringing all these things up to the/ doctor. i've read the material on the new infusions (and the possible side effects) and we are not willing to be part of a trial (guilt). I feel guilty for not even wanting to add one more thing to either my to do list or my worry lists. I'm just trying to get through the day.
I think that part of what makes being a caretaker so draining (for me anyway) is knowing that I have to remember EVERYTHING …for both of us. Yes, he remembered to take his meds today, but can I trust him to do that tomorrow? I have to remember all his and when in addition to remembering mine and when. Do a double check on did he actually brush his teeth or did he say he did because that was his memory from yesterday? And, nothing has changed on my daily/weekly chores of being a homemaker. So all this talk about new treatments just adds to my stress, which, I suppose is why I cannot sleep, which adds to the stress .
I'm sorry, I'm a mess. I know the kids want to help. They just want their dad to be their dad and not get lost inside the maze. They love him, I love him. I'm just not sure how much I like me right now.
Comments
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@Maru
I'm sorry. I don't think many who've not been down this road intimately can appreciate the sheer weight of being a spousal caregiver. Not only are you tasked with the physical and emotional well-being of your LO, who may not appreciate your efforts, you have to do all of the things you've always done as well as learn about and take over his share of keeping your household functional as well.
That said, I can appreciate your children getting excited at the idea of any new (FDA approved, in testing or snake oil) treatment on the horizon. Alas, the media working from press releases in very early days seldom tells the whole story.
FWIW, the new infusion medications seem to work best for younger, white males in the early stages of confirmed Alzheimer's. They carry the risk of brain bleeds and death. And they're both time consuming and expensive. For the cohort that does well on them, it seems to delay progression by about 6-8 months.
HB5 -
Please try to stop feeling guilty. The treatments in the news are really not all that great. A few months delay and a lot of side affects. Brain swelling and brain bleeds. Sure doesn’t sound helpful for someone whose brain is broken. Then there’s the ‘ take this natural vitamin’ suggestions. Not helpful either.
Let your children suggest it and give them some variation of ‘I’ll think about it’. Then, in return, suggest something they can do to help you. Because that’s what they are trying to do in their own way. So if they are close in distance, suggest a visit while you go to the store, or that they go to the store. Suggest they research the best mattress pads ( or whatever) online- because you are busy dealing with him and don’t have time.
5 -
It sounds to me that your kids could help you more by providing practical assistance for his day to day care than by suggesting treatments that are unlikely to help at age 89. Do you have any in home respite? Hospice? Have you thought about memory care? My heart goes out to you, you deserve some relief here or your kids risk losing you too....
3 -
I have seen a lot of articals about maybe, could be, would be, but nothing effective. There is no way you or anyone dealing with this has the time to go down every rabbit trail on every article. You should definitely not feel guilt. You should be proud of yourself for all you do and have done. I had a little bit of that kind of advice and I just said I would talk to the doctor about it (even though most of the time I didn't). In my case is more about what I did wrong that caused her to get this.
3 -
I'm so sorry youi're going through this. My children sent me a lot of 'out there' articles about how to cure dementia when my DH was first diagnosed. I finally told them that if there really is a cure for dementia, we will be sure to hear about it from someplace other than Facebook. I know that they are just trying to save their dad. We are all so sad an horrified at the changes that are happening. I think the advice to give them a practical way to help you is the best possible answer. Remember to take care of yourself as much as you can.
We all feel guilt about what we did/didn't/could have done. It wouldn't have made a difference, and the guilt is just one more burden on you.
1 -
It is hard….just really hard and when you are doing your best you need to forget guilt!
Some suggestions…get pill boxes and take your pills together…as many as needed and if you do not take meds put a tic-tac or two in yours…if you take a pill when he does not give him a tic-tac in his container…pill time is together time…lol
brush your teeth at the same time…shower at the same time…
Med suggestions? "thank you…I will talk to the Dr about it"
Find out about Meals on Wheels…get slow crock pot recipes….think sandwiches for dinner
and yes…if you children live close enough schedule weekly visits….bonus if they bring a meal or take Dad for an outing.
If at all possible get someone in to help a bit even having someone to clean once and month is a big help
You can not maintain the life you had and it is you who changes….you can do this but you must let go of what is not really important. Together time is important…chores are not
We are here 24/7/365 and we care so feel free to share and question!!!!!
3 -
Guilt will eat us alive! It is happening to me, questioning every decision I must make since placement and going forward—yes, silly of me to be plagued by future events that haven't even occurred. It's so hard to take it one day at a time because even when I have taken every precaution to thwart off unwanted situations, the universe decides to throw a new curve ball.
3 -
have your children read the book “The 36 Hour Day” which helped me. Sadly there are no medications or vitamins that will help. Your children need to understand that and focus on helping you. I would have a conversation about that. They don’t realize they are adding to your stress.
4 -
Yes, the guilt (and so unwarranted) somehow creeps into our psyche. I am going through that now. Alot of people think they know until they are in your shoes. They think they are helping but they hurt when they question you about what you are doing etc. I know people mean well, they lack knowledge and (like our kids) don't want to accept that dad is not getting better. We then bear the brunt of their oblivion. I am so very sorry. NO ONE understands until they have walked in our shoes. God bless you and give you peace. I have learned this is a process wrought with emotional land minds. I pray for clarity and wisdom every day. Some days I can see clearly the reality of things and what needs to be done, but other days I just feel like a monster who can't cope anymore for the mental, emotional and physical destruction in my life. You are not alone. We are all in this sea of despair hanging on every single day. Our guilt is not fact, but overwhelming reactions and results of our emotions. We have to constantly sift through these realities every day.
5 -
I agree with M1. Or here is another thought. Ask your kids to take the lead on what they are learning and make it happen where and if appropriate.
I empathize about the guilt. Everyday. Not a day goes by where I relive the time that my husband asked me to promise him that he could stay with me forever and that I’d never pit him away. I have so many people telling me I shouldn’t feel guilty. So much easier said than done. I think it is just a given for the caregivers amidst this horrible disease. And as you’ve noted it is on top of having to remember and do everything. It is so physically and emotionally exhausting. Important thing is to just do your best to kick the guilt aside and take care of you and do whatever is needed to keep you healthy and experience some peace.1 -
I want to help my husband and children. Asking for help is difficult. I think that there is a lesson in humility there that I have yet to learn. The irony is that for so many years I have prayed for both humility and patience. Well, guess what? It is here and now.
I have suggested The 36 Hour Day. Has anyone read it, not that they have said so. I do need to gather my courage and speak to the kids about how their suggestions only add to the stress. I also need to learn to ask for help in practical ways, like what kind of mattress protection to get (another caretaker's suggestion) and so on. And, I think that I need to re-read The 36 Hour Day.
Before closing, I am praying for you and all the caretakers out there that God will give you the wisdom, patience and strength to get through this day and every day.
4 -
Yep, I've had the vitamin/mushroom suggestion. I have a daughter and a DIL who are great fans of FB and other social media and get most of their medical info there. I also have 2 children who actually look up medical research, one daughter who has so many problems within her own family she doesn't have the time to do these things and, thankfully, we have one daughter whose only desire is to be present. Honestly, in spite of the stress and guilt and all the rest of it, I can still say God is good to me. Maybe that's enough.
2 -
I’m so sorry you are struggling. The warning for caretakers of PWS should include, “we are giving you this empty bucket you will proceed to fill with guilt.” As well as a suggestion, “Though some treatments have shown they temporarily help a small number of PWD, please work toward recognizing that dementia is incurable and that it will progress regardless of what you do.”
You are doing the right thing not putting your DH on these medical interventions. I hope you can have a conversation with your children that the most help they can offer is respite and support for you, as your father will greatly benefit from that, but won’t from any of their medical or dietary suggestions.
Please give yourself as much of an internal break as you can in the guilt. You are doing an amazing job supporting your husband.
xoxo2 -
Well, that's a new one to me "we are giving you this empty bucket, etc". So appropriate, so true. I am going to write that backward on my forehead so that every time I look in the mirror I will read it again.
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The empty bucket is more like 50 gallon barrels coming down on a conveyer belt towards me. They fill with guilt, frustration, sadness and loss among many other emotions as I struggle to be DH’s 24/7 caregiver.
I really, really hate this disease.4 -
I'll have to remember this analogy. It's so befitting.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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