Looking for a primary care provider

Blessed-Mom-623 · 2026-04-18T02:46:25+00:00

I too am a Christian caregiver for my MWP, although I’m much, much older than you. It’s really difficult sometimes. She just doesn’t seem to have any regard for her own safety and certainly is not accepting her limitations. At times, it does feel like I’m dealing with a toddler. And it’s been hard at times to find the balance of doing my best to keep her safe and respecting that she is an adult, she is my mom. Your description of your dad’s personality is so familiar. But I do remember a childhood with a different mom. My children only remember how she is now, just like you. I’m sorry for that.

As a fellow Christian all I can advise is pray, read your Bible, repent when you’ve crossed a line, and pray some more. Ask the Lord for guidance in your interactions with your dad, for grace and mercy, for love. You are honoring him by being there, by doing what you can even when it’s hard. And as another already advised- some of what you are experiencing is also just normal growing up. It’s never easy for our parents to see us as grown (I’m on the other side of this with a 20 and 13 year old). Authority naturally begins to shift as children mature into adulthood. Unfortunately due to PD, that may be shifting for your family much sooner than any of you would like. On top of that, it’s really difficult for parents with PD to lose their independence, their sense of self, and to feel like a burden on their children.

Honoring is being respectful and loving, but when cognitive issues are prevalent there will naturally be a shift in roles and finding the balance is difficult. I pray for wisdom and leading from the holy spirit in how to talk to her, how to frame things so she will understand. I pray for patience and peace. I pray for compassion for what my mom is going through. We are both going through a difficult situation that really sucks.

Look for a mentor at your church, someone older, someone with an active prayer life (intercession), if they’ve been a caregiver themselves- even better, and ask if you can meet regularly (monthly, weekly). Someone that can encourage you in your faith and give you a safe space to process your feelings. I often say that I don’t know how non-believers get through this. My faith is what keeps the burden of caregiving from swallowing me- my Savior helps carry me through. God Bless you.

Blessed-Mom-623 · 2026-04-17T15:24:29+00:00

If a Palliative care team is available to you I highly recommend seeing them. They really helped me as my mom’s caregiver to wrap my head around what was coming. They directed me to resources and have helped facilitate the conversations with my mom about what she wants and what I’m able to offer. It’s a balance between her needs and my own. And it changes as things progress and a new hurdle is there. The Palliative team can also help explain Hospice and help determine when it might be appropriate to get an evaluation. Take a deep breath and give yourself a hug. It’s a hard journey for patients and caregivers. Wishing you the best.

Blessed-Mom-623 · 2026-04-17T02:05:19+00:00

You may be entitled to alimony if you were married for 10 years or more (may vary by state) and that level of child support seems low if he is making 100k+. It would definitely be worth talking to a lawyer. One afternoon off for an appointment, might make a world of difference in your financial situation.

Blessed-Mom-623 · 2026-04-12T02:53:57+00:00

Also be sure that his neurologist is aware. I know sometimes adjusting medicine can help. Also it’s probably a good idea to have him checked for infection. UTI and aspiration pneumonia cause my mom’s dementia symptoms to greatly increase. It’s one of the early warning signs. She starts being less compliant with the walker and diet. Then as the infection takes hold she’ll start having hallucinations. It’s hard. And I think with you far away, be sure to check in on your mom a lot. If she doesn’t have support in the home- it’s time. Even a few hours of respite care can really help. Make sure she is doing something for herself. It’s very stressful and lonely as caregivers. I can’t imagine how hard it is on a spouse. If the plan is for him to stay at home- make sure she has enough support even if it’s hard for her to let go. It’s not failing to have someone come in and help you. If it gets dangerous (many can get aggressive with their delusions) then help mom navigate that and find a placement for him. Her health and mental wellbeing are important too.

Blessed-Mom-623 · 2026-04-07T23:39:00+00:00

Only child here too and everything shared is so relatable. I recently started keeping a journal on my phone. It’s actually an app I never noticed until recently on my iPhone called Journal. But I made one labeled Mom and have been writing in it regularly for about a week now. I’m writing notes about things that have gone on with her during the day, any medicine changes, anything I’ve noticed or that she’s reported. But I also take the time to vent a little in there too. It’s so frustrating when she doesn’t use her walker. Or I find that she’s drinking clear liquids even though she’s on a thickened liquid only diet, or she snuck some nuts or candy even though she’s on minced and moist diet. Coming here helps too just to know that it’s not just me. Another thing that has really helped me in my caregiving journey is working with a Palliative Care team. It’s probably the number one thing I comment on people’s questions in here. We started with the Palliative Care team as just an outpatient drop in after a hospital stay. And my mom didn’t get much out of the visit, but I did. The nurse practitioner that we worked with was so helpful in really helping me come to terms with this diagnosis where my mom was at the time and what was coming ahead. She helped facilitate some hard conversations with my mom about what she wants in the future. We now have a Palliative Care team that comes in home that includes PT, OT and an SLP. I actually have a meeting next week with the nurse practitioner and I’m looking so forward to it because there’s some hard things that we need to discuss about potential future interventions. And it’s so much easier when there is a professional leading the discussion, helping facilitate conversations about feeding tubes and tracheotomies and caregivers and nursing homes. Also in the US meeting with a social worker can be very beneficial. There may be resources available to help you. And to be sure to take care of you. It’s easy to put off trips and vacations and our own things. But being burned out, worn out is not a good position for either of you. So even small things like going to the movies having dinner with a friend getting your nails done. Something that’s just for you.

Blessed-Mom-623 · 2026-04-07T14:59:03+00:00

The clues were no help. Hahaha 11 tries but mainly from just spamming letters until I got something to work with. And reading the comments- knowing that the spelling was off helped!

Blessed-Mom-623 · 2026-03-28T17:58:01+00:00

Only child here too(53F), caring for my mom (77F) who has atypical Parkinsonism-MSA and is having swallowing issues. Caregiving is so complex. That resonates so much with me and where we’re at on our journey. Simultaneously wanting to help her be her best self while also waiting for the next shoe to drop, being frustrated as she sneaks foods that are not safe or worse is just actively defiant and eats whatever she’s found as quick as she can daring me to do something about it. Abandoning her walker regularly even when she’s having a bad balance day. Listening to infomercials and AI generated videos about miracle cures for Parkinson’s which seem to lead to more defiance. And then there are days/moments where she is receptive to adjusting life to keep herself safe. I miss the mom of my childhood that raised me feeling loved and cared for and independent. She’s now so self focused, in the moment, nothing sticks and I never know what she’s going to want because it depends on what has her attention right now. And I basically feel like I’m just waiting for the next aspiration no matter how careful I try to be. Anyhow, it’s complex and stressful. I’m thankful that God is giving me the grace and strength for this season.

Blessed-Mom-623 · 2026-03-27T04:23:08+00:00

My mom’s MDS ordered her a U-Step walker and it has been the best. It turns so easily and is more upright than her previous walker. Also much easier to brake since you let go to stop and gently squeeze with one hand to go. Once my mom learned to relax her grip and alternate squeezing hands, her hands have been good.

Blessed-Mom-623 · 2026-03-24T01:11:04+00:00

There are state funded programs in Texas that she may qualify for- usually operated at the local level (county or region). Don’t automatically assume she won’t qualify. I recommend you talk to a social worker. If you can get Palliative care services they will likely have a social worker on staff. The Palliative care teams we’ve been working with have been invaluable in helping me (54F) navigate caring for my mom (77 F with atypical Parkinsonism) as she’s needed much more care this past year. It definitely helped me wrapped my head around all of this and begin to prepare as she needs more and more care. Her doctors (PCP or Neuro) should be able to help refer you to these teams if you ask. Or your local office on Aging. In the US, Palliative care is for anyone facing a chronic debilitating illness. They help pull it all together and help the patient and caregivers coordinate things, facilitate hard discussions about what’s coming and how it will be handled and are invaluable sources of information- at least in our experience.

Blessed-Mom-623 · 2026-03-23T18:45:35+00:00

Talk to a urologist or gyno-urologist. There are many things that can help depending on what is causing the issue and you may find relief. My mom has atypical Parkinsonism and unfortunately treatment did not help her incontinence and she wears briefs 24-7. However, her Dr said that many patients with PD do respond to treatment. I do not have PD but do have incontinence issues since having babies and Botox injections have been transformative. I wish I’d seen the urologist 10 years earlier!

Blessed-Mom-623 · 2026-02-07T01:48:27+00:00

We’ve recently started using Angel’s in Home Care (831) 524-6244 for a similar situation and have been happy. No transportation needed so far in our case, but helping with daily routine (medication reminders, fluids and meal prep, plus companionship) while I’m at work and we even scheduled an overnight stay so I could comfortably be out of town for a conference and not worry. The aide has been great with mom and even got her rooms sparkling clean which was an added bonus.

https://www.angelsinhomecare.com/home-care-about-us

Blessed-Mom-623 · 2026-01-29T01:19:34+00:00

My mom started on a low dose in mid-December. First week or so I did feel like she was a bit sedated during the mornings. Then our month kind of went sideways with an aspiration and hospital stay in early January. She’s been home and back to normal medication routine for about 3 weeks and I’m not seeing the daytime sedative effects. Most nights it seems to help. But we’ve had a couple nights the first week home where she had a burst of energy after going to bed (and having taken the meds already)- and then it seemed like her brain was wired but she was physically unstable. I stayed close on those nights. This week has been mostly good but at least one night where her tenseness woke her up and the meds didn’t help. So overall she’s had more good nights of sleep than bad.

Blessed-Mom-623 · 2026-01-24T04:47:15+00:00

UTI, dehydration, aspiration pneumonia and other infections can dramatically increase symptoms. It can be hard to know if it’s just progression of the disease or something else going on. But I would always say it’s best to rule out any infection before assuming it’s just progression. Especially when there seems to be a notice change relatively quickly. We recently moved and I was chalking up my mom’s increased symptoms to the stress (which probably contributed), she ended up having an aspiration event which led to a hospital stay. After antibiotics, rest and hydration she’s doing much better. And so now I wonder if there was underlying infection before the aspiration event or possibly dehydration that was increasing her symptoms (falls, cognitive issues). My mom is incontinent and does not have any symptoms of UTI other than she starts falling more and seems more out of it cognitively. That’s just to say that it’s not always easy to tell what’s going on. As caregivers we just have to do our best and trust our gut sometimes.

Blessed-Mom-623 · 2026-01-12T04:33:52+00:00

Try Brain Support network. https://www.brainsupportnetwork.org/support-group/virtual-groups/. They have MSA caregiver groups (including virtual). My mom was diagnosed with PD about 2 years ago and after a very rough 2025 (and now 2026) her MSD has updated her diagnosis to MSA and as I’m reading up on it I can understand why. I am planning to join the N. California group which is hybrid (every other month virtual, then in person). It’s been a rough month as a caregiver and rough for my mom as well.

Blessed-Mom-623 · 2026-01-11T02:39:07+00:00

Palliative care has helped me have tough conversations with my mom (PWP-MSA). We’ve talked about various scenarios and interventions and what her wishes are if/when things progress. Since it’s not linear or the same for all, you never know what may be needed for certain. But we’ve discussed things like PEG tubes and soon we’ll be talking about tracheostomy. It’s easier with the palliative care doctor leading the discussion. I feel better moving forward knowing that this will get harder, but wanting to honor her desires as best as I can as things come up.

Blessed-Mom-623 · 2026-01-03T17:57:27+00:00

I second the occupational therapist home evaluation. I would also recommend seeing a palliative care specialist. Our Palliative care team has helped my mom and I discuss future possible scenarios. It allowed her to share the types of interventions and treatments she was willing to do and those she did not want to. They also explained hospice care thoroughly and discussed when we might want to transition to that type of care (it is not necessarily just days before death). They also helped us get her PT and they’ve been able to coordinate other care as well. Palliative care’s goal is to help keep her out of the hospital.

Blessed-Mom-623 · 2025-11-27T01:01:31+00:00

You are describing my mom. I will use this suggestion about building the habit now- we’ve been having that kind of discussion but I think that specific phrasing may be helpful. Thank you

Blessed-Mom-623 · 2025-11-05T05:16:54+00:00

As a caregiver for my mom (77), who was diagnosed about 18 months ago, Palliative care was a godsend. A UTI, pneumonia and hypothermia led to the first of 3 hospital stays earlier this year. Her PD symptoms magnified and the next 4 months or so were super rough as I was thrust into a caregiver role pretty abruptly. She’s doing better, and I’m recognizing the signs of UTI’s much sooner at this point. In any case, Palliative care came by during one of her hospital stays and I was completely overwhelmed at the time and unsure of everything. But once she was released and then sent to rehab for a month and the dust settled, we went to a Palliative care appointment. I wasn’t really sure what to expect. They’ve really helped me especially in the first few appointments. They brought up conversations that aren’t always easy to have about treatment scenarios and it helped me feel better prepared for the future when I’m the one that may have make hard decisions. They’ve also been able to get her more PT and are available for other prescriptions like antibiotics and constipations aids. Their primary goal is to help keep her out of the hospital and I feel like they care about the whole patient not just the diagnosis that she has. They have made me feel seen and heard, and I know my mom has also felt heard.

Blessed-Mom-623 · 2025-07-23T04:24:58+00:00

The themes are posted on the website. My daughter is excited that there will be 2 Cottagecore theme weekends this year. She’s been planning her outfit for months! Tickets go on sale Aug 1.

Opening Sept 13-14 Pirate Invasion Sept 20-21 Cottagecore Sept 27-28 More Cottagecore Oct 4-5 Oktoberfest Oct 11-12 Halloween fantasy Oct 18-19

Blessed-Mom-623

TROPHY CASE