Just joined.
I'm trying very hard not to "take over" and "do things for them" (mom and step-dad). My grandmother helped me to understand how awful it is to have someone be "helpful" and in reality just take away her agency and actually make things more inconvenient. So I'm really sensitive to not "taking over."
It all seems silly I know, but the more I try not to "take over" the more I feel like I end up taking over. And I'm not sure what feels like the greater challenge right now.
IDK, I feel like I should be happier about it all (happy that I'm here to help), but I often just end up feeling sad. And that makes me feel confused and awful.
It just feels impossible to articulate anything. I feel ashamed because I'm not doing a better job of handling the mental decline of my parents--both of whom used to manage multi million dollar budgets and large staffs. And now there is no decision too small to be confusing. I'm frustrated. Sad. Confused. Disoriented. Mad. So incredibly concerned that I'm losing them. And I feel awful for feeling any of it. I feel like a wuss for making any of it about me.
My brilliant daddy had Parkinson's. Watching this amazing mind slowly and agonizingly deteriorate was awful, esp as we did not have a 'real' diagnosis for years.
He hated being treated like he was 'stupid' b/c he could not put his thoughts into words and so he was either dismissed by thoughtless people, or he'd get more depressed.
By the time he passed away I had pre-grieved him so much--there were no tears left. I was so grateful for the knowledge I had that he was truly in a better place.
Give yourself a pat on the back for being there for your folks. It isn't easy or fun. I hope that your folks aren't 'angry' seniors. Don't look too far forward--try to enjoy the days you have. I know that daddy was happy to simply have me come up and watch Discovery channel and (I loved this) RoadRunner cartoons. We were very close and he made me feel loved, and I hope I did the same for him.
Try not to be so hard on yourself. (Advice I need to take, for certain).
I have done that twice - both times being the primary care giver just plain wore me out, and I grieved each day before they passed.
I took care of my uncle, who moved 1700 miles to be here instead of with his children who did not even speak to him on a regular basis. When he passed they tried to make me feel guilty for not crying - as though I did not care. Of course, they were not here to see that he was receiving the best care I could give, and that the care was wiping me out (not complaining, just being honest).
Fortunately I had the support of a very good therapist in going through this with my granny years before, and I learned that it is okay to not cry - it is okay to celebrate the life instead of mourn the death. It is okay to know that the loved one is at peace and not in emotional and/or physical pain anymore.
I hope you know that love comes in many forms, and tears can be cried by the best faker - it takes courage and awareness to be strong enough to know you did your best and the tears were spent long before life was.
And there is no right way to handle the mental decline of your parents. I suspect you’re doing the best job you can at handling it, which is by being a human being with real emotions and feelings about it. I reached out for professional help to get assistance for myself now that I’m in a somewhat caregiving role and it was the best decision i ever made. Be well.
Most if us will probably decline slowly as we age and we all hope people will be there for us.
Fly into the storm and be there for your parents as they decline. You will never regret it.
This is very hard, but you will get through. Make sure you take care of yourself too - get exercise, eat right, don’t let yourself decline too.
Make sure you have what help you need, so that your relationship with your parents can be focused on love and not just labor. Treat their caretakers with respect - let them do their job- and don’t get jealous when your parents show them love.
Be kind to yourself. This ongoing loss is painful and acknowledge (to yourself) that you are hurting. Most of all, don’t run away from the problem. Someday when you look back on this time, you will be grateful that you were there. If you run or stay away (because it’s too painful) you will feel regret and it will be too late to correct. Anyone can be there in the good times, but the true friends are there when times are tough.
If your parents say something off, it hurts. You want to get “them” back. But don’t correct them. Just love them as they are. Who they are today may be the best they will ever be. If you correct them, they might grow afraid of making mistakes and quit talking as much. Someday you will be glad for every conversation and every good day. Make your relationship a safe place for them and you will have more good days.
My mom died in my arms, surrounded by my three young children. It is incomprehensible, even as I write this to remember that moment. But afterward, my pre-teen said there was no place that she would have rather been, that she felt appreciative that she could have been there for her grandmother to help her grandmother through such a difficult time.
Her words gave me strength as losing my mom was my lifetime’s worst nightmare.
Let your parents do what they can even if they're taking longer to do it.
Ask if they want help with this or that.
Help when they're trying and seem to have difficulty doing the task.
Don't rush them.
It takes my 96 yr old Dad an hour to eat but he feeds himself and that's a good thing.
Give them Love and plenty of patience.
Do the best you can and hire Caregivers to help as you will burn out real soon trying to do it all by yourself.
She has a private sitter each evening. We still ask about things concerning her apartment because after all it is her home.
A book that might be helpful is Karen Kissel's "How to Be a Help Instead of a Nuisance: Practical Approaches to Giving Support, Service & Encouragement to Others.
Take care
With prayers and friendship
Try to find joy in the little, day-to-day things and it'll get easier.
Check in as often as you like,
We are here for you.
Mom's in a nursing home now and seems to be doing pretty well. I can't visit inside yet but we talk by the window. I know the Mom who has always been my best friend isn't able to have those long conversations we would always have or help me work through a problem. I feel this is preparing me for when she's no longer here. The feeling of loss is there but incremental. Sometimes I'm OK with it, other times - not so much. This sure isn't an easy road for any of us. Just know your heart is in the right place and what you decide will be because you love your folks and want the best for them.
I also wish you weren't feeling so bad. You feel bad about your parents' decline, bad about how you're supporting them through it, and now - bad about sharing with us????!!!
You are doing all the right things. The reason you feel bad (the only reason left) is that decline sucks, and the best answers may still not be attractive. But that doesn't make any of it your fault, you know.
There are whole text books on supporting decision-making in people with limited or diminishing mental capacity; but the key thing that I think you'll find encouraging is to remember that this is not an On/Off switch. Those small decisions which are still so confusing: you can break them down for your parents, and support them in continuing to process what they can. So, e.g.:
What would you like for breakfast?
becomes
Would you like eggs or cereal this morning?
becomes
Would you like eggs? [Yes/No]
[If no] Would you like cereal?
and eventually becomes
Here is your cereal/eggs/bacon sandwich/apple sauce/etc. [but still leaving the person the option of refusing food, in which case you offer an alternative or two]
So even at that last stage your parent must still have the option of saying yes or no.
Another approach is to wait. Suppose a decision has to be made about... fitting a stairlift, just for example. There is a lot of information to gather and to consider. As well as breaking the information down into digestible formats, you can also consider timing. Maybe the decision-maker has more energy and alertness in the late mornings. Then you can keep checking how the person seems to be coping - if they're becoming tired or overwhelmed, end the discussion (noting what the person has expressed so far) and come back to it later.
If they're presented with a spreadsheet, still offer them the spreadsheet but also give them the information summarised in a legible and comprehensible format. The same with documents and leaflets and brochures - the bullet point list is your friend. If one way of explaining (or of supporting memory) doesn't work, try another. There are almost as many approaches as there are people.
In reablement we have rules of thumb such as "try, but don't struggle." Let your parent try. Don't let him/her struggle and become discouraged.
Your own feelings about their entering the last stages of life are a different issue. Do you have any support for yourself?
I have to know: what does "doing a better job of handling the mental decline" look like, please? Do you know *anyone* who is actually good at this?
"Taking over" becomes inevitable with time ... and yes, it feels horribly wrong. Still, it's necessary.
Over several years, my late father-in-law went from being our computer guru - to being on our tech level - to asking more questions from us than we asked him - to forgetting some tasks he used to do routinely - and finally, to having difficulties every time he booted up.
During his last couple of years, it took both of my sisters-in-law, one tech consultant working remotely, plus myself, just to help him do simple tasks (and very often, to just go ahead and do them ourselves). It was his lifeline, and we were available.
(Oh, and after all that, he'd often take the PC down to his favorite computer shop for "repairs.")
My mother-in-law had to take over the household finances. One of my sisters-in-law handled his meds. Both of them had to take over the driving. All of these were HIS domains, once upon a time.
He did not always like it. OK, he mostly didn't like it (except for the tech support). But over time, he came to accept each change.
One of the comments you made about the grill is concerning, given we don't know what the scoop is. Helping to decide which grill to buy is one thing, having to have you or someone else explain multiple times how to start it is concerning. If he has some form of dementia, should he be operating a gas grill? Would he forget to turn it off? Leave it unattended, potentially causing a fire? Turn the burners off but leave the gas on? Gas stoves don't mix well with cognitive issues (electric too, but gas is much worse!)
If they are having cognitive declines, it is good to keep them active, helping out when they can, socializing as much as possible, getting exercise and good nutrition. But, if they are trying to make something like lasagna and you find yourself having to take over, it is likely because they can't do it! Until we took mom's car away, I had no way to know she wasn't cooking anymore. I had to take her shopping, and when I would come for the next trip, no meat from freezer was used and the fresh vegetables in the refrigerator were all nasty, unused. She simply couldn't follow instructions to make things anymore. Microwave foods, prepackaged fruits and boxed stuff was about it. This despite her mantra being she was "fine, independent and could cook!" She isn't, wasn't and couldn't!
Again, I'm only guessing that you are dealing with cognitive declines. If that is the case, you will have to take over, a little at a time, as they will become less and less able to process what needs to be done, step by step. Do encourage them to do what they are still capable of doing, it helps to keep them active and feel like they are contributing, but don't feel that you are stepping in, taking over and causing problems! It is more likely they just can't do these things anymore.
It really doesn't matter what they did in their "previous" life. The awful consequences of cognitive issues are devastating, no matter how smart and/or capable one was before!
As for doing things, always let people do as much as they can for themselves. Most folks with dementia will only need "prompting" in the early stages: brush teeth, brush hair, wash hands.... Eventually it will get tough to remember how to do tasks and then you may need to take over.
People are trying to sending to "private messages".
1. Go to the upper right hand side of the page.
2. Press on the circle with a "C" in it.
3. Then Press on "settings"
4. On the line below, on settings, you will see "privacy". Press on that word
5. Now you can set your settings to on or off for receiving and answering private messages.
I think I am frustrated as I cannot imagine how to respond to you when I do not understand your situation. I need a picture drawn for me, by you.
Can you tell us a little bit of what is happening to you and your parents?
Don't worry about the confusion and terror you are experiencing right now; that is normal and will be bound to make you anxious. Remember, this is all new to you. About two years ago I took over management of my brother's estate; I knew nothing and I honestly didn't even know what I didn't know. It took me a while to get it ironed out, a day at a time. By the time I felt semi-competent he died, and then I was on for being executor, and trustee of an irrevocable trust. Another learning curve commenced.
Try to slow down a little bit and give us perhaps one concrete description of ONE question you have about something that troubles you today. One at a time people can help you through with suggestions and ideas. This may not be for you; that is to say you may find you are unable to do this, and if guardianship is needed you may decide to turn it over to the State and to a Fiduciary hired by them, and to just be there to visit and help.
Slow yourself and calm yourself as much as you can, and remember, not a soul here who has not know a feeling of great helplessness one time or another. What you are feeling is absolutely normal.
Just checking in. Check your settings to see if you are set up to receive messages. I replied to your private message.
Or do I bring all responses to the top?
Guess I need to find the forum rules page....which is where?
Not sure where the forum rules are. You’ll get the hang of it.
I went to a therapist when I was completely stressed out and it was the best thing that I could have done for myself. It helped a lot. My situation remained the same but my reaction to the situation improved greatly.
You are doing everything that I used to do. I felt responsible for everything and when I couldn’t fix it immediately I felt like a failure. Life is difficult and isn’t solved that easily.
Sometimes it’s one baby step at a time, one day at the time.
I want you to read what you just wrote. They have changed. Of course it isn’t their fault because of the mental decline and yes, it’s extremely frustrating because they were obviously very accomplished successful people before their health issues. It’s heartbreaking to say the least.
You don’t have any reason to feel guilt or shame. No one can handle this situation perfectly. No one! I’m sure anyone on this forum can attest to that.
I wish that I could say something to comfort you but I am aware that you are in the midst of an extremely trying situation and my words are of little help. I’m so sorry that you are struggling with this. It’s hard. It’s sad.
Have you spoken to a social worker about their behavior? Their doctor or hospital can recommend a social worker to speak with and that was a big help to me in sorting out things with my parents. They can point out things that we sometimes miss when we are overwhelmed.
First of all let me say that you have absolutely no reason to apologize to us. You have an enormous responsibility caring for your family.
We understand how challenging being a caregiver is. Many of us have been in your shoes and are taking care of our parents too or have done so in the past.
Free yourself of the guilt that you feel. It’s very easy to become overwhelmed. It happened to me all the time when I was caring for my parents.
It’s okay to be frustrated by certain things too. Let me tell you that I don’t know one single caregiver that always had a smile on their face. Sometimes we get annoyed, even down right angry at certain times. Guess what? That makes you completely normal!
You don’t sound like a ‘takeover’ personality at all. You just sound frustrated and most likely tired. As far as the cooking goes, just do what you can. Your best is good enough.
Same with the shopping and what your stepdad does after purchasing an item.
You can’t control his actions or behavior. My mom would come behind me after I did something and question it or even totally screw it up and it would drive me nuts too.
Oh how I wish I had let the little things go by the wayside because I truly did not have any control over my mom’s behavior.
It’s a clash in personality issue. No two people agree all of the time or always understand each other.
It’s just not worth the headache to expect everything to run smoothly all the time.
If your stepdad calls for a service person to come out, just let them while you sit back and enjoy a cup of tea. Let them explain it ten times to him. Trust me I had to learn this the hard way.
You care about your family. That is admirable but you also have to care about yourself just as much.
Don’t worry about others criticizing you if you know that you have done your best. A lot of people who criticize don’t have a clue what is going on. Ignore anything that is petty. If it is a legitimate concern then you can address it.
Sorry this message ended up being so long. I saw some of myself in your post and wanted to try to help if I could.
Take care and wishing you all the best to you and your family.