Caring For Parent

A4CHY2

Both my Maternal Great Grandmother and Grandmother had Alzheimer's. And now, I am seeing more obvious changes in my own Mother who is now in her 70s. I live out of state. I am in CT and my Mother is in FL. The most challenging part is dealing with my Father, her spouse, who is in denial. He has been trying to shield my siblings and I from a the changes.

My Father, her spouse, is in denial. Thinks he can take care of her. He is trying to be patient and do the caring on his own. But, because of his denial he is keeping her from getting the proper care for her needs.

During doctor appointments he ends up doing a lot her talking for her during visits. She gets very nervous during appointments, but most recently, difficulty in processing when asked questions and expressing her thoughts due to loosing her words or trouble with her thought process.

She currently see a primary care doctor. But, I am trying to get my Dad on board in advocating that she needs to see a neurologist or specialtists. It is so upsetting and I feel so helpless. No matter how sensitive I am, I just can not get through to him.

Feeling so helpless. I can imagine it is hard, upsetting and scary to see your spouse change, but think it is really selfish. I want to get my Mom the best care she needs. But, feel stuck as to do the right thing for both my parents.

No one prepares you for this stage of life.

Amy

SusanB-dil

Hi A4CHY2 - welcome to 'here', but sorry for the reason.

Yes, it is difficult and upsetting! It sounds like your dad doesn't want to see the whole picture. I'm sure he doesn't want to see this new reality, and can't say I blame him for that. But true, that isn't helping her. You can only try to talk to him some more, or wait for the proverbial shoe to drop. Certainly not the best case. Occasionally, I've seen some posts where you might want to check how he's doing? Is he just not wanting to see the reality, or is he in denial, or could there be more going on with his cognitive reserves as well?

I'm sorry your family is dealing with 'this'.

SDianeL

so sorry you are going through this. Unless you have Power of Attorney or HIPPA authority for your Mom you can’t do much except maybe call and let the doctor know you have concerns. If they will talk to you at all. As you know, sadly, Dementia is an incurable progressive disease. Having a diagnosis or going to a Neurologist won’t help. There are infusions for early onset which your Mom does not have, but those have infusions severe side effects. I would buy your Dad the book “The 36 Hour Day” and ask him to read it. Denial by spouses or other family members is a common reaction. I would keep expressing your concerns to him and be specific about her behaviors and express your concerns about her safety as the disease progresses. Offer to help him develop a plan for her long term care.

harshedbuzz

@A4CHY2

I am sorry for your reason to be here but pleased you found this place.

Welcome to my world. I survived the situation you are describing with 2 minor details— my PWD was my dad and I was south of you in PA while they split the year between FL and MD (4 hour drive from me).

My own mom was also in denial. In many respects, she was my more challenging parent through this. I'm not certain whether she was avoiding the reality of how her life would change or if she was the frog in a warm pot of water set to boil or perhaps some of each, but she was oblivious to her hair-on-fire situation. She fought having him screened or evaluated for a decade. I noticed changes in dad's mood, an ugly turn to the darker side of his personality, as early as 2005. He was conflating family history and found himself lost in yards from his first brick and mortar business and own brother's house in 2008.

They didn't have a longtime PCP; the area of MD wasn't well served medically and the specialists in FL were focused on their specific organ system, so no one seemed to see the bigger picture. As a result, dad wasn't diagnosed until mom's refusal to see the obvious nearly killed her. Mom developed an autoimmune hepatitis and was taken to the hospital by a neighbor who saw he and recognized how sick she was. Dad didn't. She was sleeping most of the time and the color of a school bus and yet when I called to check on them, he came up with some cockamamie tale about her napping or being at the pool with friends. They didn't answer for 2 days so I asked the police to do a well check. Dad met them at the door and told them the same nonsense her told me. She nearly died. The hospitalist picked up on dad's behavior and had me tracked down via one of her doctors as an emergency contact.

She recovered and the came north to MD as was their custom. She was finally ready to get a diagnosis, and I'd researched best available in Philadelphia near me. First available appointment was 6 months out. In the meantime, he had a psychotic episode when she left him for a few days for her sister's funeral with good friends checking in. When she got home, she put him in the car and drove north to the PA welcome center where I met her and drove them both to the ER where he was admitted and given a tentative diagnosis and referral to their memory center. He did a stint in rehab for 6 weeks after and mom and I moved them back to PA to an apartment nearer me.

FWIW, there isn't much in the way of treatment for most dementias. Hopefully dad has communicated mom's memory issues to the PCP and s/he ran the basic screening tests to rule out something treatable that mimics dementia. Things like vitamin and hormone deficiencies and lesions are ruled out with imaging (CT scan or MRI) and blood tests. Both my parents have had memory issues. In dad's case, he had an alcohol-related WKS in addition to ALZ. Treating that in the hospital improved his function considerably until the combination of drinking AMA and Alzheimer's progression. Mom showed different symptoms— she was more along the lines of brain fog and word-finding issues. I brought her to her PCP who did the basic screening and discovered she had undiagnosed Lyme Disease. Treatment for that did improve her memory considerably although I am still waiting for a comprehensive workup with the memory center at some point.

There are some oral medications for dementia and some newer infusion medications. The former seem to improve function for a time in some— not all— PWD who can tolerate them. These oral medications do not slow the organic disease process even if the PWD responds well to them. The infusions are only indicated for Alzheimer's specifically and for those with MCI or very early stage ALZ. These to seem to arrest the disease process for a time. They can have life threatening side effects, are expensive and need to be infused regularly. One caveat is that they seem to work best for younger men; women, the elderly and POC do not seem to benefit as much. Mom and I have discussed this option and have decided it is not worth it for her. YMMV especially if mom is on the younger end of her 70s. The only medication we used for dad was psychoactive meds to relieve his anxiety and agitation.

I would share your concerns with you dad. Perhaps he'd respond better to an intervention with all the siblings. You'd want to caution him about having the legal documents in order so that 1) your mom would not be making medical and financial decisions for him if he became incapacitated and 2) mom's care could be handed over seamlessly to one of you should he be among the 1/3 of caregivers who die before their PWD. Your dad is likely providing all kinds of structure and scaffolding to your mom's ability to function day-to-day and should he be hospitalized or die, she will progress in terms of symptoms and you could "inherit" a mom who needs help and need to obtain guardianship to handle many aspects of that.

In your shoes, I would craft a robust Plan B for her care in the event something happens to dad. There are a host of reason why I would not have brought dad into my home, so I toured MCFs and SNFs to find the best options near me.

Good luck

HB