Dual Caregiver

Jubilee

My DH was diagnosed with EOAD atypical type at age 58 in 2021. I am legal guardian and care giver of our disabled adult son (Brain Tumor/TBI/Epilepsy). Being a dual caregiver to DH, who seems to be in mid-stage, totally delusional, and our son has pushed me to the breaking point and we are not yet even near the end. I had DH's primary care put him on a mood stabilizer because his anger was getting out of control. As the days progress and DH continues to decline in memory & self-regulation, I find my patience is becoming non-existent. I feel guilty putting my self-care first, but feel like I have to follow what they tell you in pre-flight, "Put your mask on before you help the person next to you." We live in a very rural area, no help nearby. Though my son is on a state assistance program, it is worthless as there are no services or people to help where we live. My son is actually functioning at a higher level than DH! I am just wondering if there are any others who are dual caregivers, and if so, how you are navigating these waters. Thanks in advance for your feedback.

Ed1937

Jubilee, welcome to the forums, but sorry you need them. Being a dual caregiver is really tough. We have others who are in the same boat, and they can understand the additional hurt this brings.

The good news is that you've come to the right place for help and understanding. People here will share experiences, and give you a lot of support. It's getting to that time of day where the forum kind of dies down for (usually) most of the night. Some people are posting around breakfast time, while others might post around lunch or afternoon. But we also have light traffic during the early morning hours, usually when someone is having a rough time.

Pat6177

Jubilee, welcome! I’m glad you found this site. Hopefully, you will find support here that helps to provide some of the self care that you need. I am not in your position. I just have my DH to care for. I run low on patience with just him to care for. I can’t imagine if I had two people to take care of. I just wanted to respond to your comment about feeling guilty for taking care of yourself first. It is a must tho it sometimes seems impossible. If you burn out and become unable to care for them, they are screwed. So it is important to all 3 of you to determine what you need, prioritize those needs and brainstorm how to meet the high priority needs first. This forum can be a place for you to vent, to trouble shoot and to brainstorm.

You don’t say if the mood stabilizer helped with your husband’s anger. Has it? Do you feel you are in danger? Be sure to have your phone on you at all times and keep it charged. There’s a whole list of suggestions for things to do if you feel that you and/or your son are in danger. I won’t list them all here unless you respond that there’s still an issue with you DH’s anger. One thing I want to stress is if you feel either of you are in any danger call 911. Let them know when you call that your DH has dementia and delusions so they’ll know what to expect. The police will bring him to an ER and your DH will (hopefully) be admitted to a geriatric psych ward for evaluation and for expert evaluation of medications. I say hopefully because you say you are in a rural area and I have no idea what’s available.

Whether or not another dual caregiver responds, please keep reading posts and posting yourself.

harshedbuzz

Hi and welcome Jubilee. I am sorry for your reason to be here but happy you found this place.

@ghphotog and @LadyTexan come to mind.

Being rural can make getting help more difficult although I know someone who was forced to move her foster son to a pediatric nursing home because there were no individuals to fill the service hours to which he was entitled. In my IRL support group there was a couple taking care of his mom and an adult son with Down Syndrome. This was pre-COVID, and both the son and MIL attended day programs a couple times a week which gave them some breaks. They were also awaiting an opening in a residential program being built for adults with developmental disabilities for their son. MIL's diagnosis drove home their own mortality and drove them to pull the trigger on getting their son settled into his own place while they were around to assist with the transition.

HB

storycrafter

It may be time for another meds adjustment. Besides an antidepressant, my husband (FTD, behavioral) does a lot better with the help of an antipsychotic (300 mg Seraquel), and xanax as needed for extra challenges. It did take a long adjustment time to get the Seraquel up to a therapeutic dose level (it requires a low level start and time to slowly increase), but there were still immediate benefits - he was able to calm, relax, and sleep more easily.

Your care and sanity now come first. It's got too, or there won't be any caregiving.

Jubilee

Thanks for your feedback. The mood stabilizer (Lamictal) is working so far to take the edge off his anger. Sad as it may sound, I have no guilt in knowing that I will need to put him in a facility in the future. This is rapid neural collapse and I can't stop it. There is one a me and two of them. My immediate attention always goes to my son who has the more serious medical condition. My DH sees his neurologist this week for his 6 month follow up. I hope he will be able to give me some insight on what the next few months will look like in terms of decline. I have to travel for my son's medical in a few months, and can't leave my DH alone. The closest ST respite facility requires the a 2 week minimum stay and I have to start the intake process at least 30 days before. DH refuses even the thought. I have asked my SIL to consider coming to stay with him at that time. This is a big request as she has to fly in from the west coast.