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Topic Talking with our loved one about caregiving Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2012.03.21 15:34
Parkinit had a post today that made me realize that in all the posts I've read here, not one has touched on talking with our loved one about caregiving. Thank you, parkinit!

We talk with our loved one about what HE/SHE wants, now, later, end stage, getting powers of attorneys, wills, etc., but I don't know anyone who has talked with their loved about what should be done when the caregiver just cannot continue anymore. Like parkinit said, do we have to collapse? Have a stroke? Mental breakdown? Die? In all the conversations I've had with my husband about PD, never once have we discussed what our options are if something happens to me (we have young kids, extra suck factor), and of those, what we would want. How could I have overlooked this? It has always just been assumed that I, the "healthy one", would keep on a-truckin', but I'm no spring chicken myself. So what would happen if something happened to me?

We should all talk with our loved one about what to do when our back gives out, we get arthritis, have a heart attack, get depression, have anxiety attacks, fill in the blank. The question to ask our loved one really is: what do you think we should do when I can't do this anymore?

There are no easy answers and lots of options. I'm not recommending anything, just thinking that we should all talk with our PWP about this. If anyone else has had this conversation, please share!

By barb On 2012.03.21 19:28
I have fibromyalgia and we were just faced with the what if. Pain and exhaustion were factors in decision to leave. Now that I'm back we both realize I can't lift and I need sleep. That means we eat out more often and I leave our bedroom if he gets up a million times at night. I'm a better caregiver if I pace myself.

By karolinakitty On 2012.03.22 09:50
We talk all the time about it....
He knows how hard I work as caregiver...having to take over all the household is not an easy job and he knows it. I do the landscaping, the house...we have a boat to maintain, 2 vehicles so he knows what I do....we have talked about the "what if something happens to me" issues....what if I become unable to care for him...I have "days off" we make arrangements so that I can get away for a day. And because I am so proactive in advocating PD and educating about PD.. as he does also.....we now have one day a week where we don't touch the subject at all..a day for just us....
He's constantly "watching" me as I watch him....I never realized it so much until recently when he sat me down and said..OK...what's going on with you health wise as he noticed a change in me...nothing serious... I am going through menopause but he noticed it wasn't related to that...we talk things out all the time...if he starts doing something I am not happy about.. I tell him so...we have weekly "business" meetings...may sound silly to some of you .... but that keeps both of us on top of things..all things...neither one of us is perfect so we make sure we keep each other in check....

By parkinit On 2012.03.22 19:39
lurking -

I have started conversations about a Plan B if I should be in a car accident, etc. I have to make all the plans and form the backup plan, because it is just too much for him. There are two of us on his healthcare proxy, so I plan to bring in the other person to talk about this more in depth.

When we married - with me knowing he had PD, he had me agree that he would always stay at home no matter. Well, because he struggles with the cost (not financially, but just struggle with the money going out of his pocket), I use respite days through the VA and the state to allow myself time off. Here lately, though, the "time off" is just to do more work for the nonprofit I run, which is basically a nonpaying part-time job.

I think we do all need to make a plan B. My spouse wouldn't take his pills on time if someone doesn't remind him. He doesn't cook meals, and he needs assistance with ADLs. We aren't invincible - either for health reasons or "acts of God." I was almost rammed into last week as a car ran a red light and nearly broadsided my car. Things like this bring home that if we should land in a hospital, we need to make a backup plan - show someone the drug list and where all the pills are. Have a contact programmed into your cell phone so someone can make calls for you to find a quick caregiver. Yes, good point, lurking!

By jaxrock On 2012.03.23 08:19
Excellent post! My husband and I began our conversation yesterday about this very matter.............Thanks to your post......

The "door" is now open, and we'll continue to discuss our options ....

Thank you!

By susger8 On 2012.03.23 13:57
This is a good topic. When my dad was diagnosed, my mom expected that she would take care of him and would outlive him, since he has cardiac issues and she was in excellent health. As it turned out, she died not long after his diagnosis. So, we never know what might happen.

If something happened to me, the responsibility for caregiving would fall to my sister. She would have to get Dad to the other side of the country somehow, which would not be easy, but she would be a great caregiver. She would be much more involved now if she didn't live so far away.


By lilflower On 2012.07.28 07:30
This is my biggest fear. What if. There is no one but me. What makes it more difficult and puts even more stress and pressure on me is when my PDP makes comments that if something happened to me he wouldn't want to go on.

By JBehler On 2012.07.31 15:29
I have tried to approach the subject with my husband as well, but he seems not to want to talk about it. I, also, have no one else. I have a daughter nearby but she has young kids and husband that come first. You've sparked me to try again. I wanted to take a weekend trip with friends this fall but he wants to know who will be here with him. He feels unsure being left alone for longer than 2 hrs. He falls a lot. He is not ex military so many programs aren't available to us. Does insurance pay for someone to come in? Being retired, funds are limited. How do you go about finding help?

By lilflower On 2012.08.01 08:01
Our funds are very limited due to the fact I had to leave my job without any bebefits to care for my husband. I try to run errands early when he is asleep but that is stressful because I'm constantly worried that he will try to get up while I.m gone and fall. I'm having anxiety problems which are not good for my health. And each day gets harder not easier. He gets upset if I even suggest getting someone to stay with him when I have to run erands.

By parkinit On 2012.08.03 20:06
Many states offer respite care so you can hire someone of your choice and they will pay them. Check with your local state agency about respite care. You can also google "state respite" (replacing state with your state) to find out more. It usually falls under the department of human services. The support in my state is not income based.

By Rempt2 On 2013.02.28 22:03
I've been thinking about this a lot lately as my husband will be coming home next weekend (finally). Our plan B is a nursing home. There really isn't anyone who can take over. If it is temporary then it will be temporary or if I am definitely unable to care for him it will be permanent. As long as it is nearby where I can see him.

By mylove On 2013.03.03 16:33
Are you prepared to deal with any and all loops that might be thrown when you begin the conversation? What if plan B (or plan C) is that your spouse doesn't want to go on once caregiving is necessary?

See my post above. I would like to hear if this particular issue has come up in the conversations you've had with your partners about care plans....

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