Sudden Changes and transitions
Long story short, he still seems to have his strong intuition and seems to be able to sense when people have his best interest at heart and when they don't. I ended up moving my parents and changing their insurance after that. They're in a much better place but my daddy's condition has gotten to the point where we had to put him on hospice care. It is very difficult and painful. to see him in his current condition. He was always my "go to" for advice and support, and was also the only one who could keep my mother somewhat under control...
I don't know how hospice is supposed to work, but somehow, I thought it would help take some of the burden off...
It's difficult because I find myself trying to juggle my family, husband, kids, pets, volunteer commitments, and other commitments, while also taking care of my parents. Sometimes I wish that I had just made a financial arrangement to get a house big enough to house them and my family so that I could take care of them. I was too young to do much when they went into a retirement facility and was busy with young children when they moved to assisted living. Now, they're paying a fortune for memory care and assisted living. I'm going to need to come up with an alternative in the next six months as the costs will bankrupt them... Would love thoughts, advice, or suggestions on next steps...
Comments
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welcome. So sorry about your Dad. PWD usually decline rapidly if they have an illness or fall. They may or may not return to baseline. Delusions and hallucinations are common in dementia. So is anxiety, agitation and aggression. I doubt the medications caused the hallucinations. In most cases hospitals and facilities have no choice but to medicate PWD so they won’t harm their staff. Hospice is wonderful. They provide supplies and nurses as well as counseling and clergy for families. Unfortunately long term care is very expensive and does deplete savings quickly. Home health care for 24/7 care is usually more expensive than facility care. I would speak to an elder care attorney about their financial options. We know how you feel. You are not alone. We’re here for you. 💜
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Welcome. So sorry to hear what you are going through with your parents. I agree with SDianeL that you should see a lawyer. Medicaid is probably going to be necessary. The requirement and what is actually covered varies by state. My state will not cover mc or Al and sadly a nursing home is the only option. I will attach a link that may be helpful. It might be good to have a rough idea of things before seeing a lawyer. We were advised to do a prepaid funeral. Having them live with you if only you had the space, may sound good, but it’s probably not realistic anyway. In home aids may be more expensive than mc and a busy house with family members coming and going would not be ideal. I think you would be even more overwhelmed. Antipsychotics are often prescribed to people with dementia even with the strong warnings. Hallucinations and agitation are not uncommon with dementia. These medications can help a lot and many consider them worth the risk if they can allow their loved one some peace from the disturbing hallucinations and agitation.
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Oh goodness, I have a similar story although thankfully we were able to get my dad almost back to baseline and he was able to go from the hospital to rehab. Even so he was never the same and you’ll never convince me the drugs didn’t cause him to decline further. And don’t even get me started on the state of our hospitals. The “care” is abysmal.
It is so hard to experience our LO’s decline especially when it happens so quickly. I’m so sorry. You are doing the best you can with the knowledge and resources that you have. I agree that full time caregiving in your home would be next to impossible. They are where they should be, even though I know that brings little comfort. Hugs to you.1 -
Thank you!
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Thank you! It's so frustrating! Even the hospice people are trying to put him on anti-psychotic drugs! My dad has never been violent or used physical force until about an hour after the hospital first administered the antipsychotic. It literally had the opposite effect of what we were hoping for. He was scared and anxious. The drugs made him manic and delusional. We finally got him settled down from the effect of the drugs after about two days, then that dreadful night nurse literally snuck (as in lied to me about what she was giving him when I asked what she was administering. She replied "melatonin.") the antipsychotic drug. She also threatened to have security escort me out for requesting that she reduce the sensitivity of the bed alarm as it was going off every time he moved which was waking him up and freaking him out, so she yelled at him for moving! Yes, several hospitals have become quite terrible unfortunately. Every senior citizen I know who has been sent to a hospital recently without an advocate of sorts has died there - even the ones who seemed very healthy. It's really alarming! I have also witnessed elderly abuse. It is horrifying! I did manage to find one hospital in our area that is actually good (at least when there are advocates with the patient. I would like to think they are good regardless! It is just so difficult because you want to help him but don't know how. It doesn't help that my mother who is a floor above him in assisted living doesn't seem to want to see him because he doesn't talk to her! Parents literally become the children!
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Thank you!
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PWD often experience hospital delirium and terminal agitation but often the first drugs medical professionals reach for are the worst ones possible. Make clear to hospice what drugs you will not allow and if they give you a problem, find a different hospice company.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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