Caregiver Burden and Lack of Support with Loved One with Dementia (Behavioral)

TRCJ1

Hi All,

My grandma was diagnosed with bipolar in her 40s, and since her 70s has further been diagnosed with dementia. She is an Italian immigrant with little education, but has lived in the US since the 1960s. Her spouse passed years ago, so her support system includes my mom, and only a few of her siblings (my mom is my grandmas POA and a few of her siblings are very vocal about what they want decisions to be yet are not reliable to assist in the matters or consistent with their level of support). My mother is in the medical field; her siblings are not. My sister and I are in the therapy profession (occupational therapy and speech therapy). My grandmas dementia has greatly progressed (moderate stage) per my sister and I’s clinical judgement. My grandma being Italian has always been stubborn with instances of outbursts (very emotional vs behavioral with comments and/or noticeable agitation - never physical). She had been in a supportive memory support, but was going through a new health condition for her heart in which my mom and her family decided upon hospice services for my grandma at the discretion of the hospital social works and physicians. Fast forward, my grandma graduated hospice and was placed in a new facility (similar to an assisted living facility); however, it is a very poor environment with little to no interaction and is truly ethically questionable on cares provided by the staff. My grandmas mental health and dementia appear even more fragile and impacted which has increased her emotions and behaviors. My mom and her family have attempted to locate other memory support environments in the area but have rejected my grandma due to the behaviors being documented by her current facility. My grandma is Medicaid - so limited on choices due to this and the documentation of behaviors further worsens any opportunity of other living environments. Is there no environments that support patients with behaviors? I am just in awe, especially knowing and working firsthand, that facilities offering memory care decline people due to this even if these behaviors are not often but also may be related to prior health barriers (such as bipolar in my grandmas case). I advised my mom and her family to consider getting my grandma into a new geriatric specialist who is primarily for dementia and/or looking for a care advisor vs social worker to assist in finding placement - any other ideas? Right now, they feel at the bottom of the barrel and sound like they are going to put my grandma in an apt (just a regular apt anyone can live in) and receive potential adult day if she is approved for it, followed by a few hrs of state caregivers she was approved for weekly, lastly followed by my mom and some of her not so consistent/reliable siblings to stay with my grandma at night (with potential of my grandma being alone a few hrs by herself - so not safe nor recommended by my sister or I as skilled therapists). However, my mom and her siblings all work and have personal lives outside of my grandma so this whole apt situation sounds like a disaster waiting to happen but my mom said, “we don’t know until we try and then we’ll go from there”… Very uneasy knowing they don’t have a plan B and feel at a loss for next steps. Any and all help and feedback is appreciated as my family truly needs it. I want my grandma to require the care and support she needs from professionals, but I know deep down she’ll never be truly happy anywhere but to know she’s taken care of ethically and appropriately (even on her difficult days) would mean the world to my family and I.

Thank you fir your time/support!

Marta

One word, medication. Yes, get her to the geriatrician. Video your grandma’s worst behavior for the provider. No facility is likely to accept her until her behaviors are better managed.

The apartment situation would be disastrous, as you have identified.

I give this advice as a nurse practitioner who runs an adult family home for dementia residents.

JeriLynn66

Marta is spot on with her advice.. the apartment situation is so dangerous.. can you and your sister call a family meeting? Your clinical observations, experience and judgment are critical here… good luck and keep us posted ❤️

housefinch

Agree with above! And if the geriatrician (MD) needs behavioral medication assistance, hopefully they have a geriatric psychiatrist colleague they can consult. I’m surprised she hasn’t been admitted to inpatient geriatric psychiatry for medication stabilization, actually. Your grandmother deserves the expertise of people with specialized training in psychopharmacology, particularly with preexisting bipolar disorder and now overlying dementia. Putting her into an apartment is asking for a dangerous failure and shows the ignorance of the person making that suggestion. Maybe the geriatric doctor can even write a letter stating that. I’m a physician and have done similar advocacy occasionally for my patients. Best wishes. You’re a wonderful advocate in a difficult situation.