As a caregiver, what time of day seems to be most challenging

LadyTexan

There had been a delay in the post hospital discharge home health care. I hope the issue is resolved soon. I wonder if its because the discharge was from a psych hospital and not say, a post surgery discharge from a medical hospital. 

The things I currently need help with are not DH's mental state, they are general physical things. For example, his balance is much worse now. He has apraxia. I am struggling with getting him to sit on the toilet because he is uncertain of where his body is in relation to the toilet seat. I think Occupational Therapy is what we really need now.

I want to get the most bang for my buck when I bring in the paid caregivers. So I am wanting to have them take on what is sucking the most energy out of me.

Mornings seem to be the most difficult time of day for me because so much happens in such a compressed amount of time. For example:

1. getting DH safely to the toilet and washing hands.
2. getting DH dressed,
3. getting coffee for DH,
4. administering the morning meds,
5. preparing and serving breakfast,
6. cleaning up the breakfast mess,
7. DH then retreats to the man cave for TV or music.

Preparing for bed is next in line for the most challenging time of day at our house. For example:

1. administering night time meds,
2. toileting,
3. undressing DH, 
4. brushing DH's teeth, 
5. tucking DH into bed.
6. shutting down the house for the night and getting the animals settled.

We have not had problems with sun downing (yet). THANK GOODNESS!

It seems having a caregiver here mid morning (after breakfast) is not the best use of our limited resources because DH is napping.

1. Q1 - what is the most challenging time of day at your home?
2. Q2 - what time of day do you bring in the caregiver?
3. Q3 - how many days and hours per week are you using the caregiver?
4. Q4 - for context, is your loved one moderate or severe dementia OR what stage do you estimate on the FAST Scale, e.g., my DH is 6c most of the time.

I understand I am asking a lot of sensitive personal questions. I understand if you are not comfortable sharing and choose not to. Thank you for considering my questions and participating if you'd like.

Kindly and with gratitude,

LT

loveskitties

For the toilet issue, there is an easy attachment which has hand rails and a raised seat which might help with the issue of not knowing relationship of body to seat.  Also might give some assurances and make it easier for you both.

M1

LT, we're not where you are stage-wise, so I can't really help with your questions, but:  from my work, I know that lots and lots of home health agencies are really short-staffed right now, so that lots of needs are falling through the cracks.  I wonder if that might not be the issue (or at least part of it).  I don't know if it would help to ask about staffing, but it might.  The other issue is that many caregivers don't want short shifts:  they are looking for at least four-hour shifts.  Shorter ones are harder to staff because it means the caregiver has to travel more from job to job.  It might help to think creatively about what hands-on needs he has, and if there is one four-hour stretch during the day that could be the most helpful.

David J

LT- 

Evening is our hardest time, afternoons are second hardest. DW is early stage 6 and gets very agitated at night. She ramping up when I want to ramp down. Afternoons can be tough because that’s when I try to get stuff done around the house or do errands. 

Our caregiver comes two afternoons per week for two hours each time. She will stay longer if needed. I use the time to go see friends, work in the yard, do errands, etc.

DW sleeps late, until mid morning. She is very compliant when she gets up so I have an easy time with morning routines. She usually toilets herself, but needs me to help with everything else. She is my constant shadow, making it hard for me to do anything, even chores, without her in the way. When she is agitated, she is constantly interrupting whatever I am trying to do.

It sounds like our respective spouses have different behaviors and needs, so my info may not be helpful. 

Dave

harshedbuzz

LadyTexan wrote:

I want to get the most bang for my buck when I bring in the paid caregivers. So I am wanting to have them take on what is sucking the most energy out of me.

I think a big part of this is related to whether you plan to be there when the HHA is. If the bigger help to you would be to have someone take over the morning routine of getting DH ready for the day- assuming he will accept help from someone if you are available- than that makes sense. If a break out of the house would be restorative, then it might make sense to be able to leave at a time when the activities in which you are interested are available.

Most agencies have a minimum shift of 3-4 hours; but many have a 2 hour minimum in early morning/bedtime which means if you've budgeted for 4 hours, you might be able to get wakeups and bedtimes both covered. Ask about this. 

1. Q1 - what is the most challenging time of day at your home?
   
   This was very changeable and mood-dependent until his sleep became very disorganized and he was keeping caregivers up nights. 
   
   
2. Q2 - what time of day do you bring in the caregiver?
   
   In order to get the preferred caregiver, the time around lunch was usual. This allowed mom to get a break out of the house and broken up her day. 
4. Q3 - how many days and hours per week are you using the caregiver?
   
   The agency had a weekly 15 hour/4 hour minimum shift so typically 4 times a week for 16 hours total. This worked for about 6 months. Once he started to interfere with regular sleep and began murder-suicide ideation, we chose a secure MCF instead. 
   
   
5. Q4 - for context, is your loved one moderate or severe dementia OR what stage do you estimate on the FAST Scale, e.g., my DH is 6c most of the time.
   
   I would say dad was 6b-6e although his MMSE was higher than most at that point and he was still very verbal. The incontinence piece was clouded by radiation damage from prostate cancer treatment and it came and went. 

HB

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Doityourselfer

Sundowning is a nightmare to say the least.  It's been part of my husband's routine since 2016.

The most challenging part of the day in my home is between 12:30 pm to  3:00pm .  This is the time my husband usually becomes highly agitated.  He has dinner now between 3:00 and 3:45pm.  After he eats I brush his teeth, change his disposable briefs and he's in bed by 4:00.  Sometimes he falls asleep quickly, sometimes it takes a while.   I look forward to the hours he's in bed asleep.  I can go for a walk or just sit on the deck and unwind.

Second most challenging part of the day is when he wakes up and that ranges from midnight (every once in a while) to 5:30 am.  Sometimes he's highly agitated and sometimes he's quiet.  Very unpredictable. Sometimes he takes a shower cooperatively and sometimes he doesn't.

He's in the severe stage of Alzheimer's.  He sits during the day until agitation begins.  Then he's on his feet cursing, spitting, and trying to knock over things.  Yesterday he fell in the kitchen onto his butt and got up swearing up a storm at me.  His gait is slow and becoming more unsteady as time goes on.

Good luck with your hired caregiver.

Cynbar

The problem with most home health care agencies is that the times we want and the times we can get are often two different things. Whether you are talking about private pay or certified (paid by your insurance under a post-acute episode), early mornings are in high demand. Agencies could hire many more workers just to cover the "morning shift," but then they have little to do for the rest of the day, and most want more hours than just early morning. Similarly, late night (close to bedtime) is very difficult to find people to cover, for obvious reasons. The most favored times usually go to clients with seniority, so to speak. But don't despair if your agency can't give you the times you prefer. Take what they can do, find a way for it to at least give you a break. Once you are on their list, you stand a good chance of moving up to better times as clients drop off. Of course, you may luck out and get your preferred slots right away, but don't be surprised or too frustrated if that doesn't happen.I wouldn't be an agency scheduler for anything, it's a thankless job.

For what it's worth, I don't think it has anything to do with his discharge from a psych hospital. Agencies are short staffed everywhere, we all know about some of the factors discouraging workers from going back. It leads to a delay in services for everybody.

3collies

This is such a timely thread for me. I am at the point where  I am seeking in home help but have found agencies are so short staffed that it is not happening. I am physically and emotional drained at this point. I have a history of lupus  and  arthritis so try to be good about self care. With COVID lessening, family is starting to visit for short stays. They are not here long enough for all of us to be comfortable with me leaving overnight which is something I feel I need. That will come in time, I hope. I don't feel my husband needs residential care but I need a break. Hospice in local facilities have one month minimum at this point. 

Looking forward to a time staffing improves and help becomes more available I share the scheduling issues of others.  Recently my husband has time shifted to staying up all night, going to bed between 5-9 AM. He paces, going from chair to refrigerator to stationary bicycle at times every 10 minutes (I have Ring camera to monitor.) He will often have music going via Alexa (which I have just put a do not disturb cycle on).  I am able to get a few hours of sleep through the night but it is clearly interrupted. His sleep pattern is inconsistent except that it is not at night. Keeping him up during the day has not increased sleep at night. I am tempted to not fight it and use time when he sleeps during the day to get out. But, does this just perpetuate the pattern? Any suggestions for decreasing the nightime issues? Planning on caregiver once available at night is an option if  things progress to more than the simple pacing.

I am finding it difficult to  decide when and  how much care is needed. 

Back ground info:

My husband is 72 and had a career in academics. He quit going in to work 3/20 due to the pandemic. Prior to this he was going in daily but productivity very questionable. Diagnosed with MCI 3-4 yrs ago. AD less than a year ago. Psychotic behavior a year ago seems controlled with meds. Dementia has progressed rapidly. He is able to shower and dress himself  but resists showering or changing clothes and gets adamant about it if I try to encourage him.  I need to get creative to get him to go out.  I would like to get him in day care to be around other people and get more stimulation but he would be resistant. He sits and reads the same book over and over for the past year then at other times has frequent repetitive behaviors. He gets angry pretty easily but nothing physical and I know when to back out. I would like to get him out and do things and feel guilty that he just sits while I go out. The repetitive behaviors and constant talking to himself drive me crazy by the end of the day even though I understand it is part of the disease process. 

Those that have been down this road already, have you found it better to use the caregiver hours to get out and take care of yourself during the day when the problem behaviors are better or in the evening when the outside activities are less but problem behaviors are worse?

The lack of companionship is hard but putting all the struggles AD presents on top of is at times seems overwhelming. I joined this group  awhile back but am now feeling the need to give and receive support.

Appreciate it!

LadyTexan

Thanks everyone. I did not realize there was a staffing problem. Thank you for enlightening me. I also did not realize that the options were not endless when it came to preferred hours and days. I am such a newbie at this. The companies I have looked into have a 2 hour minimum. One offers a per hour price break after 4 hours.

I have learned that Home Health Companies can turn down a customer. That has happened twice so far. Two companies stated that they cannot offer services that would benefit my husband. One company did not elaborate. The other company stated they aren't geared up for Alzheimer's patients. What a missed opportunity for them. A third company that sounded especially promising, that I have a family connection to, did not take our insurance. ARGH! 

Cynbar

Yes, home health companies can and do refuse patients, facilities do this too. And, they are within their rights to discharge patients if they or their families are too difficult.An in home company just tells you they are done, a facility gives you a 30 day notice or sends the patient to the hospital and refuses to take him back. It's really no different from a plumber or electrician, who are not forced to accept anyone's business. It really is a jungle out there. In fact, it's the frustrations with navigating home health care that pushes some patients into placement. But, if you can find the right agency and right people, it can also work out quite well.

anneleigh

1) when is the most challenging time of day at your home?    hmmmm, when he wakes up till about 7:30 in the evening.

Mornings I tip toe into the room not knowing if there is urine on the floor or near toilet area.  I usually get DH to the toilet and it is a challenging time just getting him to sit on the toilet seat.  I change him with new depends/guard and shorts.  Usually have the sink ready with water running with warm washcloth to semi bathe.  Try to get DH something to eat and relax in the family room.  All day long he wanders around the house looking for something to move.  The next challenging timeframe is getting him to take a nap after lunch.

2) what time of day caregiver comes?

I have one gal who comes 2 times a week to take him for a short walk and to exercise his feet and body..2 hrs a day in the morning.  Mondays, Thursdays or Friday

On Tuesdays, Share the care (FL) has allowed companion care for 4 hrs a week,  Basic companionship, no actual physical duties.  9am-1pm

Wednesdays, I have a different agency come from 8am-12pm, and this gal gives DH a shower, shave, washes the sheets from bed and helps clean up the bathroom.  I so appreciate this gal as it is my break from giving DH a shower.

3) How many days using caregivers? around 4 days, either 4 hours or 2 each day.

4) Fast Scale?  @6c/d

I am having assessment on Wednesday morning to see if DH qualifies for Hospice. Caregivers have noticed the considerable decline.   Appreciate any prayers tomorrow  morning as I will be nervous.  It feels like it has been a long 4 1/2 years.

Blessings~ Anne