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My friend’s mother had a stroke herself while caring for her elderly mom. Friend’s mother never recovered. So many sad stories like that.
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24. Remember that you can and should refute assumptions that others, including doctors make about your availability to be a caregiver.

"Your mom will have surgery and then you'll need to stay with her for x days until she recovers" should elicit "no, I can't do that" if you work, need to care for your family or feel that the task is beyond your skills.

Just because someone assumes you're available doesn't mean you are, or have to be.
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25. Please understand that if your parents have dementia, you, the caregiver is the one who will be the target of verbal/physical abuse if that is part of their spectrum of symptoms.

AND when they call Adult Protective Services to report abuse or delusions--like that you are stealing their money--you will need to hire a lawyer to defend yourself.

As my dear SIL said when my mother's delusions started "I always thought mom would live with us, but not if she's crazy".

She understood the legal danger she was putting her family in by housing someone who was making false accusations against staff.
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26. You may be exhausted sometimes , please set boundaries , limit visits when you need to , get rest, sleep , be kind to yourself , resist FOG. Fear, obligation, guilt.

27. Keep ice cream in the house , you may want some .

28. Don’t give up your hobbies , things you like to do . Seek new experiences .

29. Enjoy time with your own family , adult children , grandchildren . Hire help ( use LO money ) to care for LO that you are caregiving for , so you can visit family , and friends . Avoid isolating yourself, it is depressing .

30. Seek therapy , counseling , support groups for yourself as needed .

31. Live your life. You matter.
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AlvaDeer’s #14 is the best advice. I wish I had seen that warning before I did any caregiving
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32. Accept that you may be powerless to change your Loved One's situation.

You CAN change your response to it.

You can say no to demands for help; you can call 911 instead of rushing to their side.

You may have to resign yourself to "waiting for the fall, or illness" that hospitalizes them and and allows you to tell the discharge planners that this would be an "unsafe discharge".
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Keep in mind that caregiving in your home will affect your spouse and children.

Always ask your spouse how they feel about caregiving in your home. Ask them to be completely honest with you.

Know that you will miss valuable time spent with your family due to the sacrifice you made to care for a parent in your home.

If you see that this arrangement isn’t working out and you no longer have a harmonious family life, look into placement of your parent in a facility.
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Great advice!!
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Today there was a poster on a thread who was concerned about taking her stepmom with vascular dementia out. She was told by a caregiver that she could be sued by her step siblings if she fell and harmed herself.

We can’t avoid all accidents where falling is concerned. It’s awful that some people sue others for the purpose of making money.

An important discussion was started about how certain dementia patients do not adapt well to riding as in a car and serious accidents may occur.

Barb mentioned that her mom with dementia grabbed the steering wheel of the car while her husband was driving.

Please be responsible and protect yourself and others from harm instead of taking unnecessary risks by taking a dementia patient on an outing.

Assisted living facilities offer shuttle services to doctor’s appointments, grocery, pharmacies, etc. Family members do not have to taxi parents all over town.
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Bumping this up.
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This is for everyone, patients and caregivers. I’m not perfect. I have done this myself. I try to remember, everyone does but in times of distress we don’t always remember to take important meds.

Our whole family is on BP meds. Recently, my brother was taken to the hospital by ambulance. He realized that he didn’t take his BP meds that morning. He was given meds at the hospital.

I have forgotten to take my BP meds too. I have a pill dispenser for home. I don’t carry a large purse and it won’t fit. I’m going out today and buying a smaller sized pill dispenser to carry some pills with me in case I forget to take them at home.
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Don’t get behind the wheel of a car if you are terribly upset. Have someone else drive if possible, call a taxi or Uber. Don’t risk having an accident.

Also, recently I was reminded to call my therapist when I found myself getting frazzled. I called and made an appointment so I can discuss my situation. It is calming to know that we can discuss our situation with someone who will have an objective viewpoint.
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Talk about stressful things in the morning or as early as possible so you have time to digest it and lessen stress before bedtime. You need to sleep.
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Don’t blame yourself when someone you love is dying. Please know that you could not have predicted or prevented their death. Don’t feel badly if you were not there at the time of death.

Seek grief counseling from hospice or a therapist.

Often times, we start grieving their loss before they actually die.

Sometimes, people are in denial that their loved one is dying. You are not responsible for their death.

Know that they are aware of your love for them. Take time to mourn but remember that they wouldn’t want you to grieve forever.

Cherish the good memories and allow the bad memories to fade away.

Love never dies. Your loved ones will live in your heart forever.
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I agree with NHWM,
We are not omnipotent, nor we have power to save somebody. Yet, so many feel guilty. Guilt should be abolished from vocabulary for caregivers.
Even if by some unintended negligence or not seeing some symptoms somebody got worse, it is beyond us to notice everything and after all how many caregivers have extensive or any medical knowledge?
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When you are getting burned out with caregiving and someone post something negative about facilities, don’t pay attention to them.

Don’t make the mistake of pushing yourself too hard. I learned this the hard way and I seriously regret the years that I spent doing way more than I should have. You can never get this time back.

Do not place your own mental and physical health in jeopardy Professionals are quite capable of doing the job.
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Bumping up for the new folks.

This thread is a distillation of about 1000 years of caregiving experience.
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AC, please keep posts such as this one in the rotation.

Bumping this post up. We have new posters coming to this forum on a regular basis.

Posts like this will help them understand what they are in for should they decide to be caregivers at home or oversee their loved ones care in a facility.
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Wonderful and thorough advice.
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Remember that it's not ONLY about what the elder wants.

If it doesn't work for you, say "no".
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Bumping this up for more discussion.
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My motto is

*wwjd... within reason of course but I know my mom or dad would reschedule a appointment for me. I agree with self care 100%. In my opinion only (please don't ban me) I would much rather say hey can we all work as a team to ensure "abc" is taken care of and regardless of poor planning nobody is left behind. You said (your future may be in their hands) with that said I hope I've taught them compassion and team work.
In my opinion only again, if my parents can preplan so can my spouse and my grandkids have 2 parents.

I feel like caregiving is part of the circle of life and thinking that I hope I'm showing those "watching me" (kids, grandkids, friends) team work makes the dream work. Life is precious new and old.

Do not get me wrong, caregivihg
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33. It is ok to admit you made a huge mistake taking all of this on.
34. Remember the person needing the care needs to be the one to compromise, not the caregiver.
35. Don't get mad at your immediate family for not understanding the amount of work you have taken on. Just because you were willing does not mean they were.
36. You matter just as much as they do.
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37. Break free.
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Very good!
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38. Break free.
39. If you prefer, just break a little bit free.
40. Break free.
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Bumping for new folks to read before they repeat some of OUR mis-steps.
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Nursing home social workers work for the nursing home even though they are supposed to be advocates for the patients and their families. The social workers are usually overworked and they generally won't spend much time talking to the patients and their caregivers.
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In spite of how much we love someone or want to help them during their time of need, please know that we aren’t able to resolve all issues.

Acceptance of not being able to meet a challenge is hard. It can be a difficult process to learn how to cope with feeling like you need to give more, do more, etc.

The truth is that no one can do what is impossible to achieve.
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