I completely can relate. My mom complained about one of her live-in person spent all her time on her phone. I said what would you like her to do when she is suppose to be awake/alert in the event dad starts his antics during the night. I try to explain that the live-in aid is taking care of dad like when moms take care of infants. Stay awake when the baby is awake and sleep when the baby sleeps.
My mom also needed a good night sleep to properly function during the day. Prior to the live-in, she woke up a couple of times (or 3 or 4 times) night to help my dad use the bathroom.
Since my parents were in their home, my mom had her own bedroom, but she still felt like it was an invasion in her privacy and her home. Interestingly, she liked one of the live-ins more so her complaints during those 3 days were fewer. We had two aides, one worked 3 fulls days and the other worked 4 full days in one week.
I am wondering how all of you found these aides â where my parents are, the nearest visiting nurse is an hour away and is the only thing suggested by doctors. The hospital advocate said if we should need to take Dad to an ER, just drive him to the big one 2 hrs away â that would fall to Local Sibling in an energency. If the ambulance takes Dad to the little local hospital, they transfer him to the big one and once did not tell our mother; I had to call around the system to find him. But really it is the day to day burden that is the issue.
What they need is a twice a week helper, and I canât find anyone like that. I live 3 hrs away, Local sibling has no interest in this and Preferred Sibling is besieged (our folks, his FiL, his wifeâs chemo, his offsprings various crisis) . Mom pivots away from help and insists she needs no help and I am totally okay with ignoring her pivot â but I canât find the help.
No, not an only child. Iâm the eldest. I have 2 younger siblings. One lives in the NE and one lives 1.3 miles from parents. I live 20 mins from parents. (Iâm in the midwest). Can you guess how much the local sibling helped? Not very much. There was always a reason or two or three why local sibling canât do something, canât commit to specific day or time, canât bc of Covid precautions, etc. The best one is she canât be expected to help when itâs convenient for me. I was told that sheâll help when itâs best for her schedule. I often reminded her that it was not about my convenient time but parentsâ needs and convenient time. Their needs on some things canât be done at 8 or 9 pm because they were already in bed by then and visiting them in the evenings made dadâs agitation worse.
My dad was diagnosed with dementia back in 2015 and had some weird decision making moments over the years, but overall he was physically so capable of doing everything. February 2020 was when he had his first physical symptom. The beginning of frequent TIAs. If you recall, March 2020 was the beginning of Covid. So there was so many unknowns then so I started helping with groceries and making meals, going to the pharmacy, calling doctors, etc. As his disease progressed steadily, changing, declining every few months, my responsibilities of caring for him and mom gradually became a full time duty. His needs became bigger and bigger, and I got sucked in and there was no turning back.
I also felt my helping wasnât just for dad, but mom too. She was stuck in the house with him 24/7, especially the first 2 years of covid, It was an emotionally and mentally challenging for my mom to be his full time caregiver. She wasnât ready for it. He had a strong personality and often was very controlling. I had to go often to intervene when he wasnât cooperative or had strange notions. I spent time with him when mom had twice weekly zoom meetings with her church group. I took him to all doctor and PT visits so she can get some alone time and she really couldnât help him physically in and out of the car, I took on the bill paying and finances bc it was previously dadâs job. I took him out for drives because I had to take his driver license away. I took him out for walks. Things just piled on because it was necessary.
My savior was my sibling in the NE. She obviously couldnât visit esp in the early years of Covid. However, she and I talked everyday and she consoled me every day. She allowed me to complain and vent when things got stressful. She always thanked me for helping our parents. When she did visit, she and I tagged team and got big things done for parents that I couldnât do alone.
We hired a private patient advocate who recommended caregivers. My dad has a fabulous one who really treats him like her own father, but heâs doing so well I donât see how LTC insurance will keep paying the bulk of her salary. He will have a hard decision to make when that reimbursement ends.
Finding help and aides is very challenging period. However, my parents and I live in suburbs of a large metropolitan area so medical facilities are all within 15 minutes driving distance. There are 3 hospitals.
There are many private agencies that find aides. There are constraints though. For example, there is usually a minimum of 3 or 4 hour shifts and minimum days as well. Also the average hourly rate is $35 to $45 and holidays are time and half, etc. It was definitely a shock at first.
For a couple of months, we did find someone independently who came for 2 hours a day, 3 times a week after my dadâs first big hospitalization (his first stroke) and rehab in skilled nursing. Her rate was slightly lower and she was great, but she eventually wanted full time hours and my mom didnât want it then.
FIL lives in another large midwest city and working with an agency to find a part time help was not a good experience. For about a month before moving into his permanent AL, he desperately wanted to be in his home so he agreed to private aide help, but only part time, 3 hours shifts and just 3 days a week. (He really needed everyday help and at least 16 hours.). This agency was not able to have consistent person for every shift. The supposed reason was aides wanted full time and consistent shifts. The inconsistency was not helping FIL who needed consistently.
I finally found a private agency through a word of mouth for the live-in aides who helped a full month prior to my dad passing. At the end, the 24/7 live-in were a bit cost more effective than having two 8-hour shift aides. It was still costly and my mom was so against it. However, at this point, dad was not physically independent and it was physically demanding to assist him.
Do you think your relationship is now ruined with your local sister who wouldnât help?
I was the only local sib, and really resented what I was expected to do (mostly because of the way my mother treated me). I would have refused to do what I did do if there was another local sib to help out.
I made sure my other sibs knew what I did and how much time it took.
Yes, my relationship with local sibling is at its worst. Granted, she and I didnât see eye on eye on many things before all of this. She has lots of challenges and it was easier to stay away from her. I donât see us reconciling at any point, esp after all the new craziness she caused the very week of dad dying and her demands of his funeral arrangements. The latter was not her decisions to make. It was solely what mom wanted. Sibling felt her wishes were not considered.
I suspect her craziness stemmed from guilt and coming to the realization that dad was dying. However, that week was not the appropriate time for her behavior. I did what I could while he was living and saw his decline these past 3 years. His passing was definitely sad, but his âlivingâ was not living esp the last 3 months.
I understand your resentment, truly. For clarification, did your mom not treat you well? Iâm very sorry if she didnât welcome your help. My mom was grateful for my help. More often than not, she felt guilty that I was asked to do a lot. I was her crutch with so many things that I often wondered with my NE sibling how she gotten this far. Soon after my dadâs physical decline, I realized my dad did everything in their household, except cooking and doing the dishes.
We found live in aides through an agency, and we are also in a very rural area.
Honestly, if you offer to pay a lot, you can find people. I had to hire companions for my mother, to do things (errands, help going through papers etc) because my mother was convinced i was the source of all her problems (she has dementia but thinks sheâs fine). I paid $35/hour.
The main companion was highly experienced with dementia patients (Teepa Snow certification) and she was instrumental in persuading my mother to try assisted living, which was, as the ad says, priceless.
I returned Monday from two days at my momâs. She did great, though one night the sleep was rough, and she was up five time in a three-hour span. The next night she got up once to go to the restroom and went right back to sleep. During the days, she was mostly fine. Before the fall, she definitely knew that my dad was gone and lots of other things, but on Saturday she seemed confused about that. By Sunday she seemed to retain that info again. I continue to be amazed at how the brain works, or doesnât.
Everyone was on their best behavior so I didnât say anything to my sibs about bringing her here. And last night, I talked to my sister for an hour to finish a conversation we started. I was able to convey that I donât want her to quit her part-time job to care for mom full time â I reiterated that Iâm in favor of her quitting if she doesnât need the money and trying to do both are going to kill her.
I also got her to agree to quit pooh-poohing the idea of hiring help when mom brings it up. Mom for many years has been adamant about not having someone in the house. If MOM is bringing it up now, donât shut her down! I told her that we donât have to do anything now or full time, but it will help when the time comes that we might have to do that to, for now, be positive or at least neutral about the idea. My sister isnât great at nuance or long-range thinking. I have to keep reminding myself that she takes so much literally. Oh, and I also told her that if our SIL tells her something that I said that doesnât feel ârightâ then please just ask me about it. I told her that itâs not helpful for any of us to get third-party information and that I feel like we are functional enough to speak directly to clear up any potential misunderstanding.
Yes, $35 to $45 rate is typical here too. Also, people want consistent hours/schedule, esp if itâs part time work. They may already have different clients already and want to fill in gap hours. Also location/proximity to their homes and other clientsâ home was also a factor.
I just want to say that the idea of âremoving filtersâ and that revealing âtrue feelingsâ is not necessarily true. Personalities can change drastically with dementia, alzheimers, brain disorders and those changes do NOT reflect a âtrue selfâ or how the affected one really feels.
My mother had no filter when she had dementia, but I am certain that many things she said were NOT reflective of how she really felt. I feel like I knew her well enough to know that she was no longer herself, and that the things she was saying were not her true feelings.
This breaks my heart. Iâm so sorry. I agree with @gouf78 but you feel how you feel, and the fact that you feel thatâs how your mother felt about you is what makes me sad. There definitely was a time in my life where I wouldâve said the same about me and my mom.
My mentally ill son is the sweetest guy until he has a break, and then he says horrible things about my husband and me. The doctors and nurses have assured us itâs the illness and not how he really feels. My brain understands that but itâs hard on my emotions.
Iâve read many accounts of people who have undergone chemo for brain cancer or suffered stroke or another brain injury and come out on the other end to tell the tale. One thing that sticks with me is that often the care giversâfamily and nursing wonât even speak of the abuse they received from them. They often got terrible verbal abuse and sometimes physical but fortunately knew that was the person they knew was not rational and were able to continue their care of the patient. Itâs only the knowledge that the afflicted person is not acting rationally that keep caregivers moving forward. Itâs easy to say âdonât take it personallyâ but that truly is what should happen as hard as that is to do.