Parents caring for the parent support thread (Part 2)

@sevmom I have received a lot of help over the years on this site with my regrets about her being so alone at times. Thank you! I know I cannot do it.

With her dementia, she calls every night asking to live with me and I tell her yes. Then she forgets and asks the next night. Three times I have brought photos of apartments to show her and tell her we could move there, and she then says no-when it becomes real. Change is hard for those with dementia and she likes her cozy room.

I will continue with my fiblets and ruses. She goes to sleep happy when I tell her yes, and that helps.

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The physical stuff can be hard. My dad stayed fit until the very end and even then it was constant care at home. Food, help dressing, going places (walkers in and out of car). None of it was hard but just constant. You are always on call. The brain evaporates.

Our ā€œbargainā€ (so to speak) was to keep him at home (and we all wanted that to happen) but if at some point we couldnā€™t do itā€“mostly for physical reasonsā€“we canā€™t lift him if he were bed ridden or be able to take care of pain or if he fell etc.ā€“then weā€™d look for another alternative. At the very end he was at home but I did have to call on some ā€œman muscleā€ from neighbors to help a few times.

No matter whatā€“donā€™t spend time second guessing all the million decisions you have to make on a daily basis. You do the best you can with the available information at the time you have it.

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100%

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Such great words of wisdom on this thread! I wish I had started reading before things became a problem.

@compmom I wonder if your momā€™s place had something like a larger apartment that you could move into with her, and she could still receive all the care? May not be something that works for you, though, perhaps better to just keep telling her what she wants to hear. My mom could move into my dadā€™s place, either in a separate or larger apartment with him (but that could be a bad idea to move him out of memory care).

The hospice nurse passed my catheter concerns on to the doctor, who dug up my dadā€™s medical records from the hospital. Apparently the catheter is essential, because of his enlarged prostate and blockage that we didnā€™t know about. Iā€™m very glad they researched it, because I feel a lot better about the need.

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I am glad you got an answer!

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@busdriver11 My dad had a prostate issue that necessitated use of a catheter for several months. He had a portable bag device that strapped to his leg. He remained completely mobile. I believe they changed out the catheter every few weeks.

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Care facilities following standard of care donā€™t just ā€˜forgetā€™ about catheters. You can talk to whoever writes orders/makes changes to see what they think about your dadā€™s catheter and his medical progress since placement - or the charge nurse for that unit. What happens elsewhere - you just need to concern yourself with what is going on with your dad in his facility.

For skilled care and rehab (in our state) the Medical Director (who makes rounds every week, and also there are NPs to also have medical decision making 24/7 - in facility or on call) are the decision makers (gaining input from nurse manager over that unit) to decide if a resident should go off the urinary catheter, or if it is time to change out the catheter. Do not assume a person with a urinary catheter is going to have consistent UTIs. If a personā€™s behavior has a dramatic change they check for a UTI first.

@momofboiler1 your momā€™s situation is different than this one. My mom never had a catheter - she died of dementia but her decline at the end was very dramatic. My sisterā€™s mother in law was in nursing home bed for 12 years with dementia (during that time not knowing any family members - she had 8 children) and I can bet she had a urinary catheter that was well managed.

There should be enough tubing on the urinary catheter for him to move around in bed; when transferring to wheel chair or to walker, the bag should be emptied and then moved before your father. Perhaps over the past weeks at home with a diaper and his sore bottom he is just instinctively protective of that area or with the dementia and not knowing the person is a caretaker or a wife/daughter is reacting in a withdrawn manner. Get feedback from staff on how he is when you are not there - you may recognize some regular caregivers on the different shifts. I have seen men with dementia who just cannot process what is going on even when you tell them what you are checking and what you are doing. One man calmly asked me ā€œare you raping me?ā€ when I was checking his private area.

Anyone in a diaper in skilled care or rehab (or in the hospital) should be checked every two hours - so the diaper changes for wet/soiled diaper should be happening during the night as well ā€“ not 3X/day. The urinary bag should be emptied at a minimum each 8 hour shift; if ambulatory or getting in and out of wheel chair more often.

You may believe he is going to do a lot better, and maybe he will.

When I was charge nurse on a rehab unit a few years ago (3-11 pm shift), we had a 92+ YO man that had come from the hospital after a series of cardiac issues. He was in a wheel chair during the day in between PT sessions, and in the evening prior to going to bed (he was continent of bowel/bladder so transfers to toilet or use of urinary bottle). His son came by and was encouraging the man to do more walking; I could see how sick the man was. I know the family is stressed with transitions on their loved one ā€“ and they are just expecting gradual changes and gradual improvement is hoped for. That very night, he had a stroke, was transferred to the hospital through ER, and died. Again, a facility following standard of care makes rounds - in rehab each shift vital signs are checked. This manā€™s room was close to the nursesā€™ station (planned for sicker residents).

My mother in law did great her first week in skilled care and then dramatic decline to death the second week. As soon as she declined, DH went right back up there ā€“ 850 miles drive each way (so he had been with her for long stretches and helped feed her the last food and drink she would take); I told BILs with this decline to plan to get there ASAP. The BIL 5 hours away sat with her for her last two days. BIL - 800 miles away didnā€™t drop things immediately, stayed overnight on the drive, and arrived a few hours after she died. BIL and SIL from the distance location were ā€˜shockedā€™. Heck she was 92, had been on major meds for years being well managed for cardiac issues, diabetes, etc. - her nearby pharmacist son and medical providers had her being well cared for/well managed. My RN DD and I (also a RN) had been there months earlier as she was recovering with severely swollen legs and leg sores (which did heal as she got better) - that is all from her failing heart and the diabetes with the sores taking longer to heal. At the end, her chest filled up with fluid due to cardiac failure.

@compmom good for you to outline exactly what needs to be done and having your mom getting best care, and scheduling your time to be there. Glad you were informed by your mother of the appointment time and got that day taken care of! Also the list of tips was great. I know you are worried, frustrated and exhausted. Doing YOUR BEST. Sending hugs.

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Good information. Iā€™m glad I talked to hospice, as they are now in charge of my dadā€™s medical care, and investigation into his records show that he does need a catheter.

The ā€œforgotten catheterā€ issue is not that the staff just forgets about it, itā€™s that the hospital puts it in and then others forget why itā€™s there in the first place, often leaving the catheter in when there is no medical reason for it to stay.

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A lot of medical facilities have been very stressed with the staff out with Omicron Covid and the medical needs of the communities. I find it most reassuring when a family member can be a patient advocate (which often has been difficult due to Covid restrictions on bedside visiting).

Glad you have Hospice receptive and on top of it.

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Standards of care require a lot of checks but hospital routine is in no way conducive to health. Changing diapers, checking vitals constantly, PT, nursing changing IV, dietary asking for meal plan, housekeeping , giving baths, turning, the blood work person, the doctor rounds, change of shift introductions. a noisy roommate, guests leads to a bigger problem within a very few short days-sleep deprivation which can lead to hallucinations, personality changes etc. Being constantly awakened to turn or get vitals is literally maddening. The body requires rest to heal. It is no joke.

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When I had our first baby, the hospital paging speaker was right outside my door - so a MD that does nothing on our floor had a hospital wide page at a ridiculous time during the night ā€“ since I was working for a physician office I knew the MDs and their specialties. I had the soft overhead light not working, so during the night the large overhead light kept getting switched on; the work order to put in the new light bulbs came a few hours before I was dismissed (and I actually knew the maintenance person). Although I filled out meal cards, I got a standard meal w/o anything I requested for my whole stay. I delivered at 10:15 pm w/o having had any food for 24 hours - I was super hungry and yet they had only a few crackers and juice/milk. I was able to walk the next morning (I had an epidural) and walked down to the nurseā€™s station with my IV pole and begged for food.

I wrote up a very detailed feedback sheet.

25 months later I had baby #2 - but a planned induction, so delivered the baby at noon. An hour later in my room I asked for lunch tray; 30 min later I asked for lunch tray; 30 min later I called the kitchen and someone personally brought up a lunch tray with fried chicken - just as a 2nd tray with fried chicken meal showed up. I ate them both. Then the meals after that I received what I ordered. Such a difference from baby #1. The lights in the room worked and no speaker outside my room. Ate and slept better.

Yes I remember exactly what happened and that was in 1994 and 1996.

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Like @SOSConcern said, your role is helpful. I wish my mother had had someone to complain to about my foibles as we shared a house, just that complain about your college roommate kind of thing, and also the worries of life. I know my mother was afraid to become a burden and thereby be put into a home

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@compmom how long after having iron infusion does your mom feel better and/or see numbers improve. Iā€™m dealing with low numbers and anemia with my husband and they are trying iron infusion. Had first one today. Hoping will feel better quickly while we try to find source of dizziness/fainting (and if related to unsteadiness). He has other underlying problems. Slightly discouraged in reading that would take a couple Of weeks to get numbers up after transfusion. He is falling frequently. Stitches in head twice in month.

Oh I am so sorry you-and he- are dealing with this.

Venofer infusions are given 5 times in two weeks, and it takes 10 days to have an effect. So the effect of the first one would be felt before the last one, but the effect of the series would be 10 days after the last, I guess. My mother has been up more for the last week and her last infusion was today, so he may feel better a week after starting, but continue to improve.

My mother also had iron infusions two weeks apart for 2-3 hours each visit. last October. This time it was 30 minutes each time. I had to get her Zofran for nausea for the 3rd, 4th and 5th.

How low was his hemoglobin? If 7 or less, a blood transfusion is quicker. My mother had two transfusions and infusions in the hospital a year ago.

Your husbandā€™s situation sounds complicated. I have learned there are many causes for anemia: kidneys, heart valve, bleeding, liverā€¦

My mother has been close to fainting and very unsteady, short of breath, tired. I hope that the infusions take care of your husbandā€™s symptoms while he figures out what is going on. Keep me posted and I will let you know if my mother substantially improves more quickly than google predicts.

@scmom12 That sounds very frightening. My dad had an unrecognized GI bleed causing low iron.

Incredibly important thread. I read all these stories and takes for the soul. Thank you for bringing up such important topics.

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I just spoke with a friend whose elderly parents are divorced. I think it is hard enough caring for parents and in-laws, she also has to take care of her step-parents.

Why?

My 96 year old MIL feel this morning in her apartment and broke her humerus bone. She is very independent, so this will be a bit of a set back for her. Surgery will be hopefully tomorrow as she is in a good bit of pain.

She lives in a high end facility, with what should have been 24 help as needed. She pushed her ā€œIā€™ve fallin and canā€™t get up buttonā€ but the attendant was busy, and didnā€™t respond for 2 hours :scream: Once her arrived, EMS was called. No one can be at the hospital with her, but my BIL was at the apartment once he was called.

My father was widowed at age 59 and remarried a year later. He and my stepmother were definitely life partners and she was part of the package of caretaking since both of her sons lived far away and were unwilling/unable to help.

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