Hi. I'm new to this forum. I found it today after feeling overwhelmed caring for my father and could use some support and advice. My dad is 86, insulin diabetic, moderate dementia (progressing quickly) and has had recent frequent infections. We got him to finally move into assisted living about 9 months ago which was going OK, but after a fall due to UTI and pneumonia, he was in the hospital for 10 days and then rehab for the past month. He had another fall last week at rehab which landed him back in the hospital for 3 days and now he's back in rehab. His Assisted Living place evaluated him and says his care needs are beyond what they can handle there. We're not happy with the care he's getting at the rehab hospital and have been touring recommended nursing homes in the area and I'm shocked at the cost ($12-15K/month.) My dad has some assets so we need to pay privately. ALSO, his AL place says they need 60 days notice to move out so we will have paid $25K for the three months he was not in his AL apartment! The 60 days notice seems excessive. I'm planning to consult a lawyer on this especially since he needs to leave because of health issues. Has anyone experienced this long notice from an assisted living place?
Also, the palliative care nurse at the hospital has hinted we should consult with hospice once he's settled into a nursing home as she says we're likely to see more frequent infections, especially pnemonia due to my dad progressing dementia and swallowing issues. He seems fairly stable now but I'm realizing every day is different. I guess my other question is how fast do things progress at this stage? We're trying to figure out how long his money will last.
Lastly, I'm single (54) and the primary caregiver since my mom passed away 4 years ago. I haven't been working and have been going through my own savings. I don't know how we'd deal with things if I took a full-time job. My brother helps out too but he has a hard time dealing with things and his health is suffering because of the stress. We have another sibling that lives out of state that has helped minimally. My brother and I have been getting into lots of fights due to the stress we're both feeling which is heartbreaking to me as we need each other.
If anyone has any advice on any of these areas, I'd greatly appreciate your thoughts. I will spend time on here and provide some answers to others as I feel I can be of help. Thank You!
@Treeartist. I'm sorry you have the same issues with your siblings. We all deal with things differently. I think my brother's anger issues are masking his fear and anxiety. He usually apologizes. Still, it hurts on top of all else I'm dealing with - which he doesn't seem to understand. I think he think since I'm not working, I can take of the bulk of the work, yet he doesn't understand that me not working is also very stressful. I'll have to communicate this with him (we're still not talking.) My sister arrives in town next week for the holiday and I'm hoping she can moderate things being a bit more removed.) We all just want what is best for my dad.
17 years is a long time for you all to be in the caregiving role. I'm sure things will get easier for you and your family once your dad is in the same place as your mom. Best of luck. : )
@gladimhere
I've heard great things about hospice and once he is settled into his new nursing home, we'll do the consult as the doctor recommended. Thank you.
@geewhiz. Good info, thank you. My dad can not handle insulin injections any longer so we'd have to pay for a nurse to administer them and that will get pricey. Plus, we think if he's left alone for too long, he'll fall again soon enough (not aware of his deficienies) and then we'll be back to hospital/rehab loop which will set him back further and cause extra stress for him and us. Massachusetts does not allow for insulin injections at assisted living - over the border in NH they do. It's frustrating. His assisted living place has not outright say "he needs to leave" but that they can evaluate him again after awhile. Meanwhile we're paying $7K/month for his empty apartment and with the 60 days notice, we dont' want to keep that tab running if he can't return.
Contracts in AL typically have a notification time period. However, I don't see how they can refuse to accept a returning resident AND charge them the 60 day notice fee.
It is their choice not to take him back.
I am a huge fan of hospice services. (Some residents of my Mom's AL were on hospice in excess of 2 years.) Different hospice services provide different services, the one I used for my Mom (for 6 months) provided an aide for 2 hours a day, 5 days/week. In addition, a nurse came as well as a spiritual counselor. If the person improves to the point that hospice isn't appropriate, they get signed off of it. (BTW, this may be an inducement to the AL that additional help will be available).
Working may seem impossible right now, but once things are settled and your Dad is getting the help he needs, you may be able to get some work time in -- Depending upon your profession and how demanding it is.
The sibling stuff is a constant issue as you may read here. One golden piece of advice someone gave me when I was in the throes of sibling disputes -- " long after your Mom is gone, you will still be part of your remaining family. Let it go!" Most of the time everyone means well, it's just that we are approaching it from different perspectives.
$$$ Once your Dad's money is gone, he will qualify for medicaid. Meanwhile use every avenue to stretch the money. And anticipate sources of help. Would he qualify for Veterans Aid and attendance -- (look at the home page here for more on that). Make sure his income tax filings reflect assisted living or nursing homes and all medical bills (after insurance).
Hope some of this gives you some ideas.
Dad's progression seems fast, though everyone is different. Your best option to try to get a reasonable idea of how much longer is to consult with hospice. He may or may not be accepted. And some get better on hospice and are discharged.
Working with siblings while a parent is declining is very stressful for all involved. Some sibs, mine included, just need to set boundaries and limit contact to only what is necessary. Hospice can help with that as well. They have social workers that will work with you and bro to help come to understanding and work together for dad's benefit.
Hope.others will chime in here soon with more feedback and ideas.
I have no information on the transition, but I can identify with your last comments about fighting with your brother. In the space of two weeks I have had one sister hang up on me, a brother threaten me with violence, and tonight I asked another sister to leave the room because she was being ugly to my 87 year old father with demention for wetting his pants. She insists he's just lazy. We have been taking care of our parents for 17 years. We started out with minimal care and have progressed to 24/7 over the last 7 years. We have paid caregivers for part of the day and we take shifts for the remaining hours. It is a miracle that we are all still talking to each other, but I can see that the stress is starting to break us and this is where the fighting and irritability come in. My mother has recently been placed in long-term care, and the siblings are fighting about her care there and we are trying to get my father admitted to the same center. I just recently told my brother the same thing (by the way, I wasn't afraid of him - he's a blow-hard, and has anger issues) that you said about siblings needing each other. I pray a lot. I think it will be easier for all of us when they are together in the same nursing home. We are realizing that we still will have the stresses in advocating for them, but we will be sleeping in our own beds. They will both receive Medicaid. My father had a good pension and they both have SS, but who has enough to cover the cost of a nursing home?