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.
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?
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.
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.
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.
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.
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