Disagreement on care decisions causing family rift

[LadyLouise]

I’ve been away from the forum for some time, needing to take a break. My mother was in a US care home until my daughter,who was on a long visit, alerted the family to serious gaps in her care. I flew over and we abruptly moved her back to the family home. My daughter had to take a break due to carer stress and health problems. I stayed to help my dad and sister care for my mother for 3 months.

She rapidly regained weight and general health once home, confirming my daughter’s assessment of neglect (mom’s severe weight loss can’t be attributed only to disease progression).My dad sister and I will never forgive ourselves for failing to detect the neglect, and we have expressed huge gratitude to my daughter for sounding the alarm. I have now reported the neglect to the proper authorities.

My daughter recently returned to be a caregiver for my mom. I had set up excellent care systems and routines, and recruited, trained and managed a team of care assistants during the 3 months, together with my sister and supported by our dad. Mom reached many milestones of recovery: weight gain, making sustained eye contact for the first time, regaining an upright posture after her head being permanently stuck on her chest, maintaining and improving her mobility, regaining her ability to take an interest in and handle and hold physical objects, responding verbally, just to give examples. Visiting professionals have commented on the excellent care she is now receiving.

Unfortunately despite this she still had insomnia and intense sundowning. She had entire 24 hour periods with zero sleep. She could be in an intense state of distress for hours on end and be inconsolable. She was already titrating off her previous cocktail of drugs under nurse supervision at the family’s request, when we brought her home. Her extreme anxiety put her in danger of falls, and subjected her to several hours per day of unrelieved suffering and insomnia. We asked mom’s nurse about going back on some medications. She did this slowly, to note efficacy and side effects. Critically, we decided to keep mom off the daytime strong antipsychotics she had been on in the care home. I informed my daughter of the decision at the time, but she never asked any follow up questions.

Mom suffered some TIAs and 3 infections during the 3 months, and has recently started to lose some of the weight she had regained. When my daughter arrived, mom was still recovering from the most recent of these. My daughter questioned me for hours on the drugs, attributed mom‘s tiredness and low cognitive state to the drugs, then as mom started to recover from her latest illness, my daughter attributed this to mom not being given the ‘as needed’ anti anxiety medications during my daughter’s daily shifts, thus claiming any good moments are due to fewer drugs. I tried to engage calmly and objectively but she kept arguing with my answers and we kept going in circles. I had to end the conversation due to exhaustion and recognising I was feeling defensive. But I promised to be available to resume the conversation when I was feeling stronger.

The nurse reassures us my mom is on very conservative doses for her advanced stage of dementia, anxiety and palliative care and that they are well under the levels that could be described as a chemical restraint. My daughter is highly skilled at non-drug intervention, but my sister and I and some of the care assistants have been reasonably skilled and yet haven’t been able to sufficiently deal with the anxiety through non drug therapeutic interventions alone. Also, we have managed to get through whole days with no use of the as-needed drugs - but the anxiety returns the next day, and the level of cognition doesn’t seem to improve.

The conflicted issue of drugs, together with some disconnects during my attempts to give my daughter an induction/handover into mom’s care plan and daily routines, built into a row, with my daughter accusing me of ‘willing her (my daughter) to fail’ as a caregiver for my mom. I was Ill with flu, exhausted and had carer PTSD by this point, so I brought my departure forward by 2 weeks and abruptly flew back to the UK. I cried for a whole day nonstop, and was barely physically well enough to handle the trip. I fear my mental health crisis and post viral fatigue will take ages to heal. I had hoped that caring for my mom together would bring my wonderful daughter and I even closer together but instead it’s caused a heartbreaking rift.

I came across a text I sent to a friend a few weeks back saying how excited I was that my daughter would be there soon, ‘bringing her special wisdom and energy to my mom’s care’. I decluttered and deep cleaned the room my daughter would be staying in and briefed all professionals that my daughter would be replacing me in my role. I also worked really hard to organise everything to make handover as easy for my daughter as possible, given the complexity of mom’s care needs. I am bewildered by my daughter’s accusations and she hasnt contacted me yet. I’m trying to recover from my emotional shock enough to be calm and to be strong enough in myself to be truly open to hearing her, before I reach out.

My sister reports that mom has been doing well since I left a few days ago, but my dad mentioned an evening when mom’s anxiety spiralled for a long time, with my daughter unwilling to give as needed meds (my sister is unable to be there evenings due to childcare). I trust my daughter on every other issue but as one of mom’s POAs as well as being her daughter I am duty bound to ensure she doesn’t have prolonged periods of unnecessary suffering. I have been very against drugs, and have only agreed to them out of necessity, avoided those with the most potential for harm and kept the doses low. Thank you for reading, I have been feeling so sad and alone and terrified of damage to my relationship with my daughter, and that conflict about these tough decisions will add to all of our caregiver exhaustion to the detriment of my mom.

 

[Grannie G]

Sharing the caring is what this seems to be about and includes different points of view @LadyLouise.

I feel some form of compromise is necessary here. If you know how much your daughter feels so strongly about administering drugs, in conflict with others taking care of your mother, I wonder why she has been given the responsibility.

I agreed for my husband to be medicated to save him from suffering antipsychotic episodes so I do understand your point, but handing over care to someone who is so anti drugs, to me, is asking for trouble.

When my husband was taking antipsychotic medication it was with full input and consultation with his consultant medic who prescribed them. There is no mention of a doctor in your discussion. Perhaps consultation and approval with them would solve your problem. Does the nurse have the authority to adjust the medication?

 

[LadyLouise]

Thanks for the reply, Grannie G. My mother is in receipt of hospice services at home. Although she remains registered with her GP, the hospice team has effectively become her primary care team, which I believe is common practice in the US. She is visited by her own nurse 3x per week and any additional visits needed. The nurse advises on medications generally but final decisions are made by the prescribing nurse. With no disrespect to the GP, the hospice meds have been far more appropriate to her specific needs as a dementia patient. At an earlier stage before hospice, she was prescribed meds more suitable to the general population, now it’s tailored specifically to dementia. We are happy with the dementia specific expertise of the hospice team.

My daughter has been a powerful advocate for my mum when I wasn’t there to spot the care home neglect. I was back in the UK recovering from my own burnout from the previous year, in which I had put my life on hold to be there caring for my mother and was struggling with carer PTSD. My sister and Dad didn’t spot it because care home staff were kind and hard working. There just weren’t enough of them to give the frequent spoon feeding my mother needed to maintain her weight, and insufficient systems to ensure residents no longer able to feed themselves were provided with adequate nutrition. Her weight loss was seemingly typical for her stage of advanced dementia so it wasn’t easy to pick up by family or medical professionals, in the absence of any other visible signs of abuse or neglect. My daughter was instrumental in the family decision to bring mom home, a decision we haven’t regretted for a single moment. She effectively saved my mother’s life (and her quality of life).

The ultimate responsibility for decisions on meds is with my dad, sister and me since we share POA.

My daughter’s responsibility comes in when she is the family caregiver on shift. The professional care assistants aren’t allowed to administer meds. The care assistant alerts that agitation is building, then Family caregivers assess whether my mother needs the as-needed meds. My Dad usually gives meds at the first signs of anxiety. My sister and I are more conservative, so we monitor and assess before deciding. My daughter waits even longer than my sister and I would, and would only feel comfortable to give the as-needed drugs as a last resort. My daughter does give the regular scheduled drugs, even though she would argue for getting my mother off them under the nurse’s supervision. We can override my daughter on the as-needed decisions, but only at the risk of a rift. I would love to find a solution via dialogue. My daughter is a valuable member of the care team and is the only one who can fill the gap when I go home to get an absolutely necessary break. She is brilliant with my mom and will probably need fewer dosed of as-needed drugs due to her success at mitigating my mother’s anxiety. But my mother will need some as-needed drugs no matter how exceptional the quality of care she is getting. And it’s highly unlikely she will be able to go off the scheduled drugs, unless she spontaneously passes through this anxiety phase.

I didn’t mention in my OP that I suggested my daughter raise her concerns with the nurse. My sister was present at that meeting and told me the nurse did a brilliant job of explaining just how much my mother was suffering before the drugs were added back, and how relatively low the doses are. Also, only one anti psychotic is given, for sleep. In contrast to multiple antipsychotics given at the care home (despite being apparently ineffective for my mother’s anxiety😟).

 

[LadyLouise]

I didn’t realise my daughter would be so anti drugs. I tried to keep her in the loop as decisions were made about my mother‘s care, but I didn’t inundate her with communication while she was recovering from serious stress related health problems, so maybe she didn’t get the full picture of my mother’s anxiety. Of course my mother didn’t have as much anxiety back in the care home, she was drugged to the gills. Also, my mother has declined from her TIAs and infections, which my daughter wasn’t here to see. I told my daughter she could have asked questions if she was so concerned, but she claimed she couldn’t talk to me. Yes, I was stressed but I would have listened and done my best to fully explain our decision making.

 

[LadyLouise]

Due to keeping my mother’s medications as low as possible , my sister and I have been able to maintain a lot of her mobility. This is a huge achievement given her very advanced stage of dementia and physical frailty. New caregivers and visiting professionals are surprised and impressed with her mobility. Most in her situation would be bedbound by now (No implied criticism of other people here). We’ve worked really hard at this.