The other day, after posting a "rant", I realized that I need a place to write down what is going on. So I'm going to start here. I'm not asking for advice, but all is welcome, without push back.
My mom is 91. She's had a good long life. Had a stroke in June 2013. Was in acute rehab for 2 weeks, then sub acute for 4 more weeks. She developed vascular dementia, i.e., she knows us all, knows the day, date, etc, but thinks that there is a union trying to take over the facility she's in, that there are floods all the time and that the Communists are about to take over (she watches a lot of Fox News.....). We tried her in a lovely AL facility, but she was paranoid and couldn't remember to push the button when she needed help; she fell and we moved her to memory care. She didn't do well there and we added a full time aide. She fell THERE (with two aides in the room!) and ended up with a broken hip. Anyway, post surgery for that (September 2013) we admitted her to a lovely NH. She's done really well there, gained weight, become very mobile with a walker. Great therapists (PT is a sadist, but I think they all are, she's pushed my mom to do stuff none of us would have expected!). Mom was in the hospital for pneumonia in Januray, recovered well and was back up and walking in a few weeks. Fell in June; discovered in hospital that her heart rate was quite low; we ended up doing a pacemaker. Back on her feet in a few weeks. Mom started feeling out of breath in NH a week or so after pacemaker placement. NH dxed pneumonia. Several rounds of antibiotics; chest xrays, etc. We made an appointment to see a pulmonologist, because mom has had pleural effusions in the past. Before appointment happened, she fell in NH, ER via ambulance; blood tests were all out of whack. Long story short, they tapped her chest and the little pocket of bacteria in the bottom of her lung blossomed and sent her into sepsis. She made it through that, is back in NH, after 5 days of being bedbound. No fractures, but she's still in pain. On tramadol. Talked to her this afternoon after second PT session. She said "I'm not in pain, but my legs don't work". Okay, NOT in pain is huge. At least they've got pain meds on a schedule and not PRN, because if you ask her if she's in pain, she says "no". But then she is if she moves.
My POA brother is in Europe for ten days; younger brother is supposed to get back from vacation this evening. Hey, I'm not a hands on caregiver by any stretch, but I'm trying to take care of my mom the best I can. Trying to figure out the next steps. She's got CHF, doesn't seem to be progressing anywhere! Dementia is not of the 'mean" kind, she's just confused about the facts most of the time (asked me the other day if youngest brother had 3 or 4 kids, she was concerned that she couldn't recall 4th kid). NH says not time for Hospice. Hospital says that we are not at palliative care point yet.
Frankly, if this were one of my dogs or cats, I would have put them out of their misery this week. There. I really needed to say that. I don't think that there is any redemption in physical suffering
I let mother sleep too, so visits have to occur at meal times as she sleeps most of the rest of the time and seems to need it. I think their bodies are winding down and just keeping going takes a lot of energy.
Hope your mum is better today,
Yes, relaxed day today. Going to make a big pot of lentil soup when dh finishes draining and cleaning the two fish tanks.
I didn't like night driving, and here the long-term-care facility was just down the street. At night I have trouble judging the speed of other cars.
I hope today is a "mental health day" for you - the anxiety that can increase from these unknown situations can wear you down, so take care of you too!
I've find as I age that colder weather wears me down more quickly than when I was young and liked to run around outside to prove how tough I was and how well I could handle cold weather. Now I cherish staying inside and perhaps taking an extra nap.
You mentioned a productive cough and congestion; perhaps she has a respiratory issue, such as bronchitis or pneumonia?
She may also be emotionally overcome by the birth of a great grandson; that's a very special event!
Make sure you get enough rest yourself; a 2 hour drive is tiring enough but is exhausting when there are emotional issues involved.
These kinds of times can really wear you down as well. The emotional concern and worry are enough to cause extra fatigue for you.
I stayed until 3 pm ( i live 2 hours away, and it's hard for me to drive after dark, which is why i went early). Still asleep. She's on o2, breathing sounds okay, not labored. Her color is good. Couldn't bear to wake her ( i was trained never to wake folks up. It's how we heal, sleeping is). I think she is fighting something off.
Barb, I agree, Writing things out is very therapeutic for me too, and the on line support is great.
Or my Dad calling me late at night saying he fell and an ambulance is coming. So I hop in the car and rush over only to see no ambulance in front of his building... I quickly walk to his room and he is sitting quietly in his recliner watching TV. I hunt down the nurse, and yes, Dad had fallen and she checked him over, he was fine. And no, the EMT's were not called.
Let us know how she's doing
ff - use a non drowsy antihistamine like loratadine. I use it year around.
Bet the congestion and cough is weather related. Those pretty colorful leaves sitting on the ground produce mold spore that gets me stuffed up and coughing, too. I am now half awake this time of year from the antihistamines.
Brother called last night, ,mom seems very tired, congested and has a productive cought. I'm going up tomorrow.
amy - you a great job with your mum and no need for regrets. Guilt is part of grieving and it has helped me to realize that. The caretaking does take a lot out of us emotionally and we need to care for and be kind to ourselves. There is no easy way through all of this.
(((((hugs)))))) to both of you.
Well, the good news is that i got a call last night from brother and sil; they visited mom yesterday and all was well until 3.30pm when mom started to weep...that she has something that she's transmitted to the baby due to be born next month. Bro and sil reassured her, prayed with her and " moved on"--my sil's words. Okay, this is huge! I think she sees that all the record gathering, trip to dermatologist, biopsy rigamarole had no effect on mom's thinking because mom's thinking isnt wired into logic circuits anymore. We"llmove on to new challlenges, im sure, but i feel like this is a watershed moment.
Amy, please don't beat yourself up! I think we are all good at looking back and seeing precisely what we SHOULD have done in the past in all of out relationships. It's a peculiarly human trait. I think we can pass our insight on to others as a way of increasing the knowledge base about how to get through this awful diseease with our loved ones. Be kind to yourself!
Then I wish I had been more patient over the last few years and feel guilty. I tell myself (and hope) that with her dementia she didn't notice my annoyance with her and if she did, she forgot it within five minutes. I regret I wasn't more tolerant and less resentful. I hope she forgive mes up there in heaven with my dad.
Hang in there everyone.
I found a few articles and will pm you the links so, hopefully, they don't get deleted. From the reading I did it seems that sundowning is likely neurological in origin, more brain damage, basically, which causes agitation which usually presents later in the day. Whether or not it is always linked to light levels is questionable.
I found early in the disease mother would call me in the mornings very fussed about something, whatever was the flavour of the month, so to speak. Usually it was not something that was "fixable" - like sometimes the aides were 10 minutes late with her breakfast. .I did not think it was worth calling the ALF to see if they could do anything about it as 10 mins here or there, to me, is normal. I attributed it to depression which is worse in the mornings. As the disease progressed and in the period before she was hospitalized she would call 3 x each evening. It may have been sundowning, I really didn't care, but the calls were clearly crazy and at times quite hurtful. I eventually stopped answering them and screened the voice mail for anything that could have been real that I should attend to - like aides missing a shower appointment. Of course, I did not have any other family members to deal with at that time. I think it is quite justifiable to attribute her agitations/concerns, expressed particularly in the evenings, as related to her disease, and deal with them accordingly. You know her well, and also have her doctor's opinion supporting you. It also sounds like attention getting behaviour ( hard to separate the dementia from disorders) which is unfortunately, played into by sil. Thank goodness she has you, who has a more balanced view of things, or she might be moved around more and suffer pain and damage.
Even on the weekends when I was with her something started bothering her around that time of day
Dad will call me fretting about something, usually the cost of things. He's now obsessed with the cost of where he is living and he wants to either move or cut back. We will chat about it and next thing I know it is an instant replay. It is so hard for me to wrap my head around because this just started a month or so ago.
I need to rattle some cages at where he is living as I asked them politely last month to stop mailing him a duplicate bill.... yep, Dad got this month's bill.... now I need to go visit Dad and sneak out that bill... out of sight, out of mind.
The aphasia makes this so d@mn difficult!
So, after Monday's "procedure" at the dermatologist's office (a followup to mom thinking she had something like leprosy, which of course led to doc finding something he thought needed to be biopsied on her forehead) the biopsy is negative (actinic keratosis, yay!), I get an email from my SIL late last night.
My brother went to visit at 4:30 yesterday and mom was agitated about something about her wheelchair, but couldn't tell him what (she has aphasia). She asked if SIL was coming later and she was happy to hear that she was.
SIL found mom in a hospital gown (horrors, mom only likes to wear her own nightgowns. I am decidedly unsympathetic on this point) and SIL asked all the staff why mom was in a gown. No one knew. Mom couldn't tell R about the gown, or the wheelchair, but R thought that perhaps the roomate was taking mom's clothes (where did THAT come from?).
Having been there once this week, (two hours minimum trip, each way) I fought with myself, but I decided to go pay a visit. Talked to mom's nurse. Mom never got out of bed yesterday. RN had no idea about why gown. But she got up bright and early today, so no one was concerned.
Asked mom about wheelchair. She looked at me like I was crazy and shrugged expressively. There is NO problem with the wheelchair.
Took mom to the lobby to show her pictures, etc, and in case she wanted to say something not in roomate's earshot. Nothing.
Back to room. Lunch has been delivered. There are adaptive utensils. (??)
I say to mom "you don't use these, do you?" She shakes her head no and I get her some regular cuterly. Aide comes in and says "OT has ordered these for your mom". I ask if I can talk to them and indeed they are in their office. So I run down. OT has noticed that mom spills half her food, so they've gotten her adaptive eating utensils and a scoop bowl. Very nice. thank the OTs.
Go back to mom's room. SIL is there for a visit. Turns out she's seen the adaptive silverware before. Somehow, mom being in a johnny coat is MUCH more important than the fact that mom's motor skills are clearly declining.
It seems to me that the fact that my mother is only upset about stuff late in the afternoon (4:30 or so) and after indicates that this is sun-downing, even though the sun doesn't go down until 8 PM here these days? Not sure about that.