What to do when a caregiver needs care?

Thank you to all on the forum for caring enough to read and respond to each other's posts. It helps sometimes just to know someone has "heard" us and often may share our concerns and feelings. And thank you to AgingCare for providing this forum so we can feel less alone.

This is a general post on this topic. My advice to all is to have a plan A AND a plan B. Recently put Mom in assisted living because plan A (my sister) failed. And now I have to get mental health help for my sister, who does not want it. My mother didn't plan anything--no life insurance, no will, no living will. So I now have to arrange for all of that, and try to help my sister, and take care of their house as well as mine. As for myself, I'm only 58, but I already have my top 3 assisted living facilities picked out. And, after I get my mother's estate docs and POA done, I will do mine. Good luck to all.

Hopefully the PACE social worker will be able to go over all your concerns with you. I would hope they would let you start the respite a day before your procedure and extend it if you need more time to recover. Unless the rules have change, PACE owes you that.
There's a fine line between trying to plan ahead so you'll know what will be available and losing sleep over all the what ifs.
Best of luck working things out and being able to feel at peace.

I am SO SO SO sorry for you. I'm going through a similar situation and it just feels like no one cares. I CARE. If I could help you, I surely would. xo

Your questions here are not only 'good ones,' they are essential to ask and figure out how to manage the various scenarios that may arise. While I do not know what PACE is, clearly it is imperative that you figure out a 'longer term' plan for your husband should your own recovery require more time.

* I believe due to stressors and the health/life needs of family care providers, almost all here go through this and need to make other arrangements - both short term and long term.

* You are very blessed to be 'in good hands medically' - so many do not even have that.

* Anxiety. While it IS a nuisance, it DOES give us information of what we need to do ... do something. It is also a killer so do what you need to do to manage it:

exercise (yoga, swim, tai chi, running)

meditate (listen to Buddhist You Tubes)

get enough sleep

eat well

Slowly integrate new behaviors for self-care into your daily life.

- Include more support through Meet Ups / church / friends.
- Take respites, even if / when your DDS needs are managed.

This will require that you change your current life-style - a step at a time. Track your changes / intended changes and feelings in a journal.

* I do not know if long term placement for your husband is practical / a thought / or needed yet. However, it is time to do your research and find out what your options are - this 'doing the research' in itself will ease your anxiety.

* The answer could be as 'simple' (I know it isn't) as finding a caregiver to come into your home to care for your husband as needed while you are recovering, and perhaps on an ongoing basis to ease your responsibilities of being 'on' 24/7.

Gena / Touch Matter

con3ill: I did see your post of four hours ago. If need be, perhaps you can get further help from your town's Council on Aging. I am sorry that your DH (Dear Husband) suffered a stroke. Good luck on your dental surgery.

Responses much appreciated. I haven't updated my profile. My husband is now 70 and I'm 73. He's been in the PACE program since 2012. I have Durable POA and Health Care Proxy for him and I've legally designated a couple of agents for DPOA and HCP for me. So the big stuff is in place, but the anxiety about transportation to and from and the uncertainty about how long I'll be incapacitated is the big worry. How do I know what to ask from all of our trusted service providers? Something as simple as, I can bring him to the respite facility the day before surgery but the day after, I may not be well enough to drive yet so I'll have to ask the PACE program if he can come home in one of their regular chair lift vans. That's a service the PACE program offers. I have a good relationship with the van company after all these years, so can explain the situation. As for home care for me post-surgery, as a first contact in case of trouble, a capable neighbor whom I've known for years through a church connection (not a licensed CNA, tho) who lives two houses down the street and is more than willing to look after me and call for help if I need it. I don't want to do overkill on having 'new' aides around. We do have a long-term (years) trusted CNA thru PACE, which goes thru established agencies, and I can inquire as to her availability for us during my recovery period. In answer to another questioner, family is not in area. Just writing this has helped me focus and I hope it helps others who may be facing the same dilemma.

Inform both his and your PCP regarding the situation. Get a referral to a Social Worker or Case manager. You do not mention any other family??? Also the respite care facility should have a Licensed Social Worker who may be a help going forward.

You may want to go ahead and confer with an Elder Law attorney to get best guidance for both you and your husband, both for current and long term needs. Be sure that you both have POA, Living Will, Medical/ Durable Power of Attorney and other forms completed. A Licensed Social Worker should be able to help you with these if needed.

Your health and well being is important. Get the help you need and deserve...

Best regards

Perhaps "respite care" is flexible and you can start with a small time period and expand it as needed (packing extra clothes and ?)

Sorry to learn about your husband suffering from a stroke. Your profile says that he is only 60. Is Medicare helping him? You need plans to take care of yourself now. If necessary, contact a social worker.

That may be an excellent question to your local counsel on aging. If you also wish to be proactive, then search out your local places that offer respite and ask questions about emergencies to "feel the vibe". Same with in home care since some places are short on staff.
Where I live, my county, there is an annual 1.7 k voucher that I could apply for.

Start proactively searching in your area and schedule that procedure. There is nothing like a deadline to get you moving

When we were overwhelmed, my husband is my caregiver, we contacted through doctor or hospital social workers who will help you navigate what options are available to you in your area. Family and friends can be called on too Much love

Agree with others. While there is time, make a Plan B but your anxiety may end up messing up your surgery and recovery. YOU NEED TO TAKE CARE OF YOURSELF! Check around for a facility that will provide respite care for your entire recovery period OR find someone as a live-in to care for hubby during your recovery and the week leading into your surgery. If you jeopardize your recovery, you jeopardize his future care by you. I know it is so difficult. Does your local college have a nursing program? If so, You could check with the administrator. There are many nursing students who would jump at the chance to do a short-term live-in arrangement to care for hubby. You could have regular caregivers scheduled when the student is at class and so on. Best Wishes for You!!

One day at a time! No one can predict the future.

Wishing you peace as you continue on your journey.

Mark Twain is attributed with saying “I've had a lot of worries in my life, most of which never happened.”

Sounds like you’re well prepared, so you have time to work out a Plan B in case recovery takes longer than expected. Can PACE help with that? What about your family/friends network? County resources through Aging? Insurance for recovery care?

What-ifs can cause a great deal of unnecessary anxiety. You sound like you’re a good planner. So do what you do! I’m sure you’ll get some good real-world advice from here.

Best wishes to you both.

PS - A line from a favorite song occurs to me: “So take one day at a time. Leave tomorrow until tomorrow. Peace is what you’ll find, one day at a time.” The song is Each Day Has Its Own Anxieties, you can watch the vid on jw.org or use this shortcut: https://bit.ly/ItsOwnAnxieties

I understand your worry. We're all concerned, because what would they do without us?

The truth is that many things we worry about never happen. But we're responsible people, and you seem to have all your ducks in a row unless a couple of them escape.

The biggest thing I see is your anxiety right now. You could ask your doctor for a medication to treat it on a temporary basis leading up to surgery. I'm sure doctor will want you as relaxed as possible going into your procedure.

Next, find someone to either come over every day or stay at your house once husband comes home. Make it clear to the person that if you need hospitalization on short notice, they need to stay with husband. Alternatively, make sure that respite care knows that husband may need to come back for a while if your recovery doesn't go well.

That's about all you can do, and good luck.