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Advice given me by a stellar discharge planner at Danbury (CT) hospital:

"Once a patient is "in a bed", make sure they stay "in a bed". Never take them home "just for a bit".

Facility to facility tranfers are the way to skip over the "waiting lists" at rehabs and Nursing Homes.

If you try to get your LO into a facility from home, you generally end up on a waiting list. Sometimes those lists are YEARS long.

But a patient coming from a hospital, via discharge orders skips over those lists.
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Take your health very seriously. My best friend died last year while caring for her MIL who was in her 90’s. Her husband is still caring for his mom. He is in his 70’s. I hope she doesn’t outlive him! My friend was 68 when she died from a stroke.
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Don’t let the flying monkeys get in the way . Ignore their guilt ridden , unrealistic advice .
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I know that many of you have deep insights on caregiving. Please share so those who are struggling can learn from your experiences.

Tell the ups and downs of your journey. There are many lessons that can be learned from your experiences while caregiving.

Past and present caregivers are able to make a difference in how new caregivers approach their role in helping to care for their parents, spouses or other loved ones.

My thanks to Barb for posting a valuable thread.

Keep this thread active!
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Do not be loyal to a particular doctor if you feel like your parent isn’t receiving the best care.

Do your research and switch doctors. There are other options out there who will provide better care for your loved ones.

The same holds true for hospice providers. If you are not satisfied, you are not obligated to stay with them. Change over to a different company.
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No matter what LO demands of you “to maintain their lifestyle “, do not stop your own life to do everything for them that they want . They are old , ill , not independent . That is not your fault . You don’t have to make it up to them . Their lifestyle is going to a change , it’s part of aging .

You don’t have to constantly entertain them , wine and dine them , or take them on vacations with you or where they want to be taken .

Do not kill your self trying to keep them in their own home that they can no longer take care of. They hire help or they move to a senior community.

You don’t have to give them everything that they want , just what they need .

Learn the word NO .

Don’t feel like you have to do the hands on care. Hire help , or LO moves to an appropriate facility to meet their needs .
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If you notice personality changes in your parent, or changes in their appearance, a messy house, pets not cared for properly, confused and overly forgetful, don’t automatically assume they are being contrary or lazy. This could be a sign of cognitive decline.
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If you are the spouse of someone caring for their parents. You have a right to speak up about how your spouse’s caregiving for his/her parent is negatively affecting your relationship with your spouse and children.

Compassion and support are wonderful qualities, just don’t allow them to enable your spouse to continue on in an unhealthy pattern.

Caregivers may come out of the fog they have been living in if they hear your honest thoughts on the situation.

If your spouse doesn’t you see your point of view, you have the right to say that the current situation is not working for you. Discuss marriage counseling or possibly a separation/divorce.
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22. Unless you are generational wealthy, make sure that you understand (from a certified Elder Law attorney, not your next door neighbor) how Medicaid works in your parents' state.

Building an extension of your house, becoming "roommates" with your aged parents and/or moving in with them in exchange for being left their home are all ways in which to end up unemployed, unemployable, broke and physically broken at the end of the day.

We have too many sad tales here of how this goes wrong.
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To All,
I understand why it might be difficult to be the caregiver without having the POA but sometimes it’s best to separate those duties since both of them are big jobs.

I think every family needs to decide what works best for them and be honest about the sibling relationships in order to assess what is best.

My sibling doesn’t always agree with the POA decisions I make but I don’t always agree with her caregiving decisions. Somehow we work our way through them, even though it is difficult at times.

At the end of the day, she is mother to both of us and we are doing the best we can for her. It’s really the nature of the beast as caring for aging parents is really tough and stressful on everyone in the family no matter what role they play in that care.

Prayers going up for all of us engaged in this phase of our lives.
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Bump
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21. Breathe

22. Say No to ridiculous demands even if it won’t be understood why . Don’t give in.
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20. Ignore any foolish questions, comments or suggestions made by others who know nothing about your situation.
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19. Start researching hospice providers before they are actually needed. Don’t wait too long before calling in hospice for your loved one.
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18. Don’t push yourself by thinking that you can do it all.

A facility has an entire staff to care for their residents. One person cannot care for someone 24/7 and still have time for themselves.

If you do decide that you wish to care for your loved one at home, please hire help from an agency or a private caregiver to help with the caregiving.

Compare the cost of agency caregivers, private caregivers and facilities. Choose the best option. Facilities are usually the cheapest option.

If you choose a facility for care, don’t feel like you have to visit on a daily basis. Go when it is convenient for you.
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17. It is not difficult to notice that talking with Mom or Mil can cause arguments between spouses. Whether your marriage is strong or weak, do not allow this to happen.
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Bumping this up for new posters.
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16. Do not significantly alter your life so they don't have to change anything in there. The person needing assistance needs to be the one to compromise.
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excellent, barb :).
and all the other points everyone added. :)
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15. Do not promise a loved one that you will never “put” them in a facility. If you did make such a promise in the past and now home care is inappropriate and not working for both caregiver and caregivee (not sure if that’s a word 😉), feel free to make a new plan for the current situation based on the better information you have now.
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I second Alva’s number 13 a hundred times. Most of us have known quite a few people who thought they didn’t need therapy. Oh, yes they do!

I wish that people weren’t afraid of going to a therapist. Or, didn’t feel like it won’t help them in any way.

Therapy isn’t a waste of time! Plus, don’t judge all therapists by a bad experience that you may have had.

Research your options. If you aren’t comfortable with your therapist then feel free to find another one that you are comfortable with.
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12. Know your limitations. Embrace and recognize them.

13. Seek counseling to discuss options; Liscensed Social Workers in private practice are sometimes best at this work; they are not there to discuss Freudian experiences in potty training, but to help you comb out the problems and the options.

14. Do not act as caregiver while someone ELSE acts as POA thereby controlling the purse-strings. Get a GOOD CARE PLAN agreement signed that gives you shared living costs.

And thanks Barb, for this post. You're the best of what AC is all about.
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11. Walk away if there is any abuse. Call 911 if there is an immediate emergency.

I know someone who had to call 911 when her mom grabbed scissors and tried to stab her. Needless to say that her mom was placed in a facility after the incident.
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9. Never use your own money to care for a parent.

10. Continue to socialize with your friends .
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Yes!
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Absolutely wonderful posting! All true.

Take notes everyone!
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Good words.
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Amen sister
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Barbara, excellent advice.
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