Frustrating Night

full_moon(Editor’s Note: Today, Sue, who cares for her parents and her daughter, begins her blog. You can connect with her at her profile: @2ndheartmom.)

I don’t know if it is just me or if finding good care for dementia sufferers is just really difficult.

I am staying with my mom for the next five days while her caregiver is on vacation and we went to see my dad in the board and care facility he went to a couple of weeks ago. Prior to going to board and care, he was in a skilled nursing facility for about six days after a three-day hospital stay for UTI.  Before going into the hospital he was able to walk, with assistance, sit on the couch during the day, drink out of a glass when given one, etc. He is now pretty much catatonic in a hospital bed.

They have changed his medications multiple times in the past three weeks but he is still extremely combative when they attempt to change his “diaper” (I really hate that they call it that – is that weird of me?) and the women caretakers at the board and care are afraid of him (their words, not mine). So, I don’t think he gets changed all that often.

My mom’s caretaker takes her over every morning and every evening and they often end up doing the changing, feeding him, etc. In fact, the caretaker was asked by one of the board and care workers to come when my mom was out of town because she “needed her help.”

There is no record keeping at this facility from what I can see. When we asked if he had a bath today, the two people there said they didn’t know because they just came on this afternoon. It seems to me that the most basic of requirements is some kind of record keeping. The woman there tonight did not know that my dad did not talk or really understand things. When we said he no longer talks, she said, “Oh, he can write notes to me on a board then.” No one had told her that he had lost his cognitive abilities to communicate a while ago.

It is frustrating because my mom is paying them to “care” for my dad, but there is no record of the “care” he is receiving while there. It is also frustrating because he can’t talk or remember. Tonight my mom asked if he had eaten dinner and he said no, but the caregiver said that he had eaten well. I obviously believe her over him, but some kind of record keeping would be nice in this instance. So no one really knows how often his “diaper” gets changed or he gets bathed or he drinks water, which is seemingly important for someone who has been hospitalized twice in the last few months for UTIs), etc.

My mom is fighting her own battle against cancer. Her CAT scan tomorrow will see if the new chemo is working to stave off the latest tumors. We are now into well over a year of chemo, with three or four different kinds. She just wants my dad to be cared for and comfortable. She knows he is difficult to work with, but she chose to put him in a board and care because supposedly they would be more able to care for him than the caregivers we had at home. Now the caregivers are having to go to the board and care to “help” them care for him. We are thinking of bringing him home again, but I don’t know how one person could care for him. I have looked into facilities, but we’re all a bit gun shy after the skilled nursing facility and board and care experiences we’ve had. I just don’t know what to do.

So, I sit here, wondering what I can do in these four days to:

(1) make my mom a little less worried/lonely/frustrated,
(2) figure out what the best thing to do with my dad is. We’ve given 30 days notice to the board and care because they just don’t seem to be able to provide the level of care he needs, but we have no idea where to go from here, and
(3) what I can do to be less stressed out than I have been.

I realized today driving here that I am exhausted, anxious and somewhat depressed about my parents’ situation. I can sometimes put it out of my mind for a little while, but every time I talk to my mom it all comes crashing down on me. The fact that she will probably only be with us for another year or so. The prognosis, even with chemo was six months to a year. We’ve heard this before and she has lived on but, this times it just seems more final. The fact that if that happens, my sister and I will have to figure out a place for my dad that we trust and can visit enough to make us feel comfortable. My other sister and brother are basically uninterested in helping out/visiting/caregiving).

I have really been working on being more positive and happy, but I often fail. It isn’t really the time commitment of care since I’m far away and only get down here every so often and my daughter is relatively well right now. It is more the emotional strain of all this happening and not being comfortable with planning anything because I have no idea what might happen.

It is the same way I felt for the two years after my daughter’s heart transplant. We were in and out of the hospital, she was sick a lot (still is really). I just never felt like I could plan more than a day in advance for anything. I feel like I’m back in that position again. I’ve become a commitment-phobe because of this. Sometimes I think it is just an excuse, but other days I feel like it’s real.

So, there you have it. My night. Hopefully the scan goes smoothly tomorrow although, the stuff she has to drink makes my mom have diarrhea and feel horrible all day, so that will suck. And my dad at least appears to be cared for tomorrow when we go to visit him.

Question:  Is it appropriate to take a care binder to the board and care and ask them to record his care in there? My mom said she didn’t think they would do it, but I don’t think it takes that much time to write the time and initial when he is provided with care. It just seems like basic record keeping for health care reasons.

Related

6 thoughts on “Frustrating Night

  1. Avatar of DeniseDenise

    Hi Sue–I am soooo glad you are blogging. :)

    My suggestion would be to go to the board and care owner and share your concerns. You have questions about your father’s care and are having a difficult time getting answers. How does the staff document care? How can you find out how your father is doing each day? Ask to see your father’s chart. I would also share the story of the caregiver who wasn’t aware of your father’s inability to communicate.

    If you’re unhappy with the owner’s response and his/her ability to make this situation better, then we’ll go to the next step.

    What state do you live in? We’ll find out the contact to call with concerns about board and care homes in your state.

    I think you are wise to keep your schedule and day open. Your priority is your family (your parents, your daughter) and you want to keep your day open to be available to them. In essence, they are your priority and top your To Do list. Everything fits around them. That’s a good way to manage a chaotic situation. It’s okay that you’re doing this. :)

    I hope all goes okay today. Let us know when you can.

    Reply
  2. Avatar of RichardRichard

    Sue, I fully 100% agree with Denise. Your mom is paying for your fathers care, she has every right to see his file, the logs showing when he received Meds, bathed, feed, etc. I would think if you took in your own log (basic information of course) asking for initials and times, similar to this:

    LOG NAME
    PATIENCE NAME: DATE: 00/00/0000

    AM Meds (Provide List):
    Time: Meds Given: Int:

    Breakfast:
    Time: How Did He Do?: Int.:

    Mid-Day Meds (Provide List):
    Time: Meds Given: Int:

    Snack:
    Time: How Did He Do?: Int:

    Food/Med Schedule Continues …..

    Times “Briefs” Were Changed (Provide Time/Int.):

    ______ ______ ______ ______ ______ ______

    Additional Finding, Activity, Unusual Behavior, Aggressiveness, etc.
    (Please Provide Date, Time, Event and Initials)

    1)
    2)
    3)
    4)
    5)

    END

    Along with any other information you may be looking for. If department stores, restaurants, well any public bathroom has to have a cleaning log per state, maybe federal requirements, if its not already a requirement, why is it not a requirement that board and care facilities, assisted living facilities, etc be mandated that a log be kept “and readily accessible to family members” on a simple request? I hope everything goes well for you and your parents. Good Luck on the search for a new facility if for sure you head down that path. If you ever need a “WAIT Buddy” feel free to send me a text or email. Namaste’

    Reply
  3. Avatar of SueSue Post author

    Thank you Denise and Richard. It is funny because I immediately thought about the bathroom logs myself when they could not answer the most basic of questions. :) Great minds…

    Denise – we did talk to the owner (or at least my mom and sister did). I think the problem was that they were empty when we were looking for a place, so they took my dad despite being unprepared to care for such an advanced level of dementia. They are now filled up again and I think the level of care is now not something they want to provide. So, that is why we gave 30 days notice. But, figuring out an alternative is not easy as my mom is somewhat indecisive (chemo drugs plus a nervous personality have made her almost incapable of making decisions and feeling confident in them) and my sister is about at her wit’s end with dealing with things (since I live so far away, she usually is the one to deal with all of the day-to-day decision-making).

    I think I will do up a log. I did one for my mom when he came home from the hospital after the first UTI for the home health care providers to use – I can just revise that slightly and take it over. It will make my mom feel better to have something to look at when she arrives each time I think.

    We are in California Denise. We are working with a senior care liaison from their hospital and she has given us some other options. But, again, my mom is indecisive at best, so it is tough. I would like them to move up to my area as I live in a University town with a Center for Aging and there are much better care options for my dad and I think my mom would like to spend time with my daughter. But, there are no hospitals up there in their “system” which means long trips for chemo, doctor’s appointments, etc. I am sure there must be some way of dealing with it as there must be other families in this system of hospitals who end up having to relocate their family members for short times. I guess I could/should check on that…

    Anyways – thanks for the responses. This webpage has been a great place of comfort for me over the last year, but I was more a lurker than a blogger. I would like to start writing more regularly as I think it would relieve some stress and I feel like there is so much understanding and support and resources here, I should be utilizing them! So, thanks all!

    Reply
  4. Avatar of DeniseDenise

    Hi–While you’re in town, would you be feel comfortable talking with the owner about your concerns? That you want the staff to complete a log? Your concerns are very valid. As you look for other options, I think it’s great to be sure your father receives the best care possible right now.

    As a licensed board and care home, the facility does have to follow regulations. This PDF spells out what your father should be receiving as a resident: http://www.disabilityrightsca.org/pubs/502501.pdf

    We’re thinking of you. :)

    Reply
  5. Avatar of ejourneysejourneys

    Hi, Sue — I don’t know if this applies to your dad’s facility, but hospitals keep patient flowsheets. They’re not provided when you ask for hospital records, but must be requested and paid for separately. They are handwritten notes kept by the nurses on duty.

    This site provides free templates:
    http://www.gobookee.net/patient-care-flow-sheets/

    I agree with Denise — sometimes living one day at a time (and one minute at a time) is the best one can do under the circumstances.

    Reply
  6. Avatar of JaneJane

    Hi Sue:

    Welcome to the group. I’m sorry about all your stress dealing with your parents. I only read Denise’s reply and I agree. They should be keeping some kind of log and I would be very concerned.

    As a caregiver to my daughter I can totally relate to what you are saying about your daughter. I feel that it is just too hard to plan out too far but I still try to so Nicole will feel that she has a somewhat normal life/future. I am always ruled by the life of her batteries on her portable oxygen concentrator. I am also ruled by when they will tell us that it is time for her to have a transplant.

    I struggle just like you with being positive. I have a very hard time with this. I don’t do what I need to do for my daughter or myself like I should and then I beat myself up.

    Feel free to join the Caring for Children group here on the site. I would love to have some input within the group.

    How old is your daughter?

    Hugs:o)
    Jane ~ mom to Nicole 18 years old
    VSD- ventricular septal defect
    PFO – patent foramen ovale
    ES – Eisenmengers Syndrome
    PAH – Pulmonary arterial hypertension
    BHJS – benign hypermobility joint syndrome
    ”You’re braver than you believe, and stronger than you seem, and smarter than you think.”

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>