Had a good 4 days in Vegas (no, didn't win!!!).  I had the facility do the laundry while I was gone because my brother is undependable.  This week there seems to be more things happening with mom.  The right arm and hand are starting to contract and the massage therapist also told me she's holding her head turned to the left most of the time.  I do know she can turn her head because if there's something happening on the other side, she does turn that way. 
Hospice called yesterday about extending her breathing treatments (there's a cold going around) and replacing her Effexor with Celexa (makes no sense to me, usually things are done the other way around, but I don't think she's getting any benefit from the antidepressant anyway) because she seems to have a scared sort of look on her face.  I called back to make sure they are tapering her Effexor off VERY SLOWLY because from personal experience that drug is very hard to come off, I felt horrible when I was withdrawing from it.
I also decided I'd take a ride up there just to make sure she was okay.  I had lunch with her and I did get her to laugh a couple of times.

I casually asked some people at the NH if they'd seen my brother lately and nobody has seen him for a couple of weeks. 

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Almost August, this year is flying by.  The care planning conference was pretty short since there really wasn't anything new going on with mom.  A couple of weeks after this, though, she fell out of bed and hit her head on the nightstand.  Luckily, she didn't break a bone or her skull.  Unfortunately, this happened when she was having her breakfast in bed (she really isn't a morning person so they were allowing her to stay in bed and serving her breakfast there.  She was sitting awkwardly and must have leaned over and went right to the floor.  No more breakfast in bed. 
Now she gets up with everyone else and of late she's been weepy when the aides are doing her ADLs for her.  We suspect it's her arthritis hurting her and her morning Tylenol has been changed to a Vicodin.  This seems to have helped and as far as I know, no weepy mornings anymore.

The administrator has asked us 3 times now if we'd like to move upstairs (we are on the 1st floor, upstairs is all the bedridden people).  There is no reason other than they'd like all the hospice patients on one floor, so I told them no for a couple of reasons.  Mom is still very interested in watching other people and she still eavesdrops and gives herself away when something funny is said and she laughs, she also enjoys being in the living room after dinner and watching TV with everyone.  There is another reason and it's mine - there is 1 elevator and since I come around mealtimes with her laundry, the elevator is busy with meals being brought, dishes being taken back and residents taken back upstairs after dinner.  I am not keen on carrying all the crap I bring up 2 flights of stairs.  I also don't believe them when they tell me they'll still bring mom downstairs during the day because I know who's up there and the only time I see them is at mealtime.

So the administrator tried the "we'd like to have all the ambulatory people on the 1st floor" and I told her I guessed the other 15 people in wheelchairs would be moving also?  No answer to that.  I think I'm just the most agreeable person and she figured I'd say okay.  Not this time.

Family relations are very strained - I hardly hear from my brother, I don't think he's visiting weekly but I'm not asking because it'll make me mad.  Then I received a response from my aunt (mom's older sister) to one of my update emails telling me she was sorry she hadn't replied to a couple of them because it's just depressing for her.  I sat on that for a few days and then emailed her back to let her know I wouldn't be depressing her anymore with my updates and not to respond, which she has not. 
I'm going to meet my boyfriend in Las Vegas in a couple of weeks for 3 days (he is in the Navy stationed in San Diego), so I'm looking forward to that.  This is a rescheduling of a trip I had planned in February - we sat on the ground de-icing in Detroit for 3 hours in a horrible snowstorm and then the plane broke, sending us back to the gate.  I was debating on what I should do and heard the pilot say to the mechanic "I'm not flying this plane like that" and I promptly got up and got off the plane.  Shouldn't be any snow now!

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I think this video gives a pretty good idea of where mom is.  We have a care planning meeting this week, I'll report on that Wednesday.

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I am hating this disease lately (more than usual).  Long story short, in January mom became even more unsteady on her feet, was having trouble getting "started" with walking, and fell a few times.  Two weeks ago she began to use a wheelchair and was receiving physical therapy to see if we could regain some stability with walking or whether this was neurological.  They also made sure she wasn't ill or having a UTI and was clear in that respect.

After a week of PT, it became clear this is not a blip on the radar and we believe this is a progression of the disease.  The nursing supervisor asked me if we would be interested in a hospice consult and I did agree to that, since it will be more support for her and I do like the hospice staff that comes to the nursing home, very caring people.

Mom was accepted into hospice - nothing really will change with her care (she won't have to change rooms or anything), she will have an additional aide looking in on her and she is followed closely by the hospice nurse for anything she might need.  The hospice social worker and chaplain visit with her (she doesn't care too much for the chaplain but maybe she will warm up to him) and the social worker will take her outside when the weather gets better on days I'm not there.

She doesn't seem to be aware that there's been a change in the people looking in on her.  I have noticed over the past couple of months she is more tired and although she used to be one of the "late-night" ladies as far as bedtime goes, when I got there tonight a little after 7 p.m. she was already in bed for the night.  We had a nice visit anyway, I asked her if she wanted me to sit next to the bed or cuddle with her and she patted the bed next to her.  I sang some songs to her, she held my hand and she fell asleep.  She doesn't talk much, just yes or no, and generally only if she wants something. 
Tomorrow I'm taking the dog with me to see her, which she will enjoy.  I'm still working on myself, I just feel like I exude sadness lately. 

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I haven't decorated, I only have to give 1 present, mom doesn't really understand holidays as far as I can tell, but at least she's pretty healthy and pleasant.

The home had a holiday party last week and she seemed to enjoy it.  My brother and my nephew came for dinner also.  We all had great food, the home had music, all the families came and there was lots to look at.  Santa also visited with presents (that we had purchased for our loved ones prior).  My aunt sent my mother 2 of the read aloud books for people with dementia by Lydia Burdick.  We sit together, I read and point out all the little details in the illustrations.  Really great books, I believe they're available on Amazon and the Alzheimer's Store.  The one she likes best is called "Happy New Year To You!" and it goes through all the months in the year.  Here is a picture I took just before the party started.  The big dog she is holding was a gift from my brother.

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I can't believe 2 months has gone by so fast.  Things are stable as far as mom is concerned, nothing big happening - but more occurrences of bowel incontinence.  I am now able to change her when necessary without gagging!  She still says "mumma" a lot and if I am hugging her she will cry and say "mumma" but she is easily redirected from crying.  Lots of time when I visit I'll read her a book, but she loves to cuddle too. 
The home is putting in a new floor on the porch and next week they are repaving the parking lot, so it's nice to see they do put money back into the facility. 
The holidays - I'm not sure how we are going to handle them, seeing as I'm not having anything to do with my sister-in-law.  Last year they had mom and me over there for Thanksgiving and Christmas (but as usual I was the only person tending to her while they talked on the phone and played video games), so I can easily see my brother saying they aren't going to have her over there.  I can spend some time with her at the home, and probably will take her out for a long ride if they don't do anything with her.

Hope everybody is doing okay and that things are as close to quiet as possible!  It won't be another 2 months before I come back with another post!

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Without going into a long story about it, since my mother and father divorced years ago, we 3 children have had little to no contact with him.  Periodically, one of us would Google his name just to keep tabs on where he was.

Last weekend, the Google search turned up an obituary.  Evidently, he died at the beginning of June.  We were not notified at all, despite the fact we live less than 50 miles from where he was and my 2 brothers have lived in their respective homes for over 20 years.  Okey dokey, the stepmother strikes again.

Because we have no medical history on him, we were interested in his cause of death, so I went and got a copy of the death certificate from the funeral home.

- Metastatic pancreatic cancer
-Parkinson's disease
-Diabetes

In the space for "Time of onset to death" the word "month" was written.  I was most dismayed to read he had Parkinson's, as that can have a component of dementia also.  It did answer the question as to why I might have diabetes (we were not aware of any family history of it before).  So all in all, a very important document for us. 

Here is a kicker - my mother never talks about him and we assumed she had forgotten that part of her life.  The other day, I was telling a funny story from when I was a kid involving my father and she responded with "I wonder if he's still alive."  I just answered that I had no idea.  There is no need to tell her this information, as she only gets upset when discussing family.

As far as how mom's doing, she seems to be losing more language and sleeping more.  It's not unusual for me to go into the living room at the NH and find her asleep in a chair, which is something new.  When she speaks, she sometimes stammers or slurs words.  Heath-wise she's stable and she is still walking.  She also continues her physical therapy (sitting down and standing up, walking).

I also have some GOOD NEWS - HER DIAPERS WILL BE COVERED BY MEDICAID!!!!  She has been added to the incontinence program and regular deliveries will occur.  I'm glad, because she is going through 6-7 diapers a day.

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Okey dokey - last week mom, after being at the home for a year, slipped out one of the doors and ended up in a stairwell.  The home has a basement and 3 stories on top of that.  She normally is on the first floor.  The story I got was that they couldn't find her and knew I wasn't there, so they fanned out and one of the first places they looked were the stairwells.  Who knows how long she was there.  Thank God she didn't try to go down the stairs.

I asked her what happened and she seemed to remember going into the stairwell pretty clearly.  She said she just stayed there until someone came to get her.  I did ask if she was trying to go out on the porch or if she wanted to run away and she answered "run away."  She was pretty agitated the whole day according to the aides (I arrived in the afternoon). 
What I don't understand is that the door she went out has a keypad on it and I know mom is not able to use the keypad.  What I believe happened is that they never have residents even trying that door and had disabled the keypad.  It is now on again because I've seen the staff punching codes to get out that door.

Another thing is that we have now moved from pull-ups to full diapers - mom was literally going through 6 pull-ups a day and 4 pairs of pants.  Of course, when I went to Sam's Club to get the diapers, they don't carry her size in the store (XL), so I had to order them.  They should be here tomorrow and I bought some small packs to tide her over.  I thought she would be really upset about them, but she seems unfazed and even said "my new undies hold more".  It's also easier on the aides because she is not wetting through her clothes and they can be changed without having to take her pants off, unlike the pull-ups.

Next week we have her quarterly care planning meeting (30 mins where the family, head nurse, activities director, dietary director, physical therapy and social worker all meet to go over any needs mom has or issues we have with her care).  I'll probably update then!

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The most wonderful man came today to play some music for the residents on the front porch, so I thought I'd share this video (the quality isn't too good because I took it with my phone) and everyone seemed to be enjoying the music and the day!  My mother is in a purple shirt on the left side of the screen, kind of hard to see, she's about 4 or 5 people from the front.

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I know I said I'd take and post some pics from mom's birthday party, but it turned into a quiet family conflict with my brother instead (mom was not aware), so I wasn't in the mood.

That was resolved eventually, though.  She did have a good birthday and seemed pretty happy. 
The physical continues to deteriorate - she had a pleural effusion on a chest x-ray that almost looked like pneumonia, so she was on an antibiotic for that.  Her leg is stable.  She is now totally incontinent of urine and is having a very hard time "starting" to walk after she gets up from a chair.  She usually has to be cued to lift her foot by touching her leg and a lot of the time it takes us a few minutes for her to get started.

I'm going to have to check on something though - on Saturday I wasn't sure whether she was down to her last few disposable briefs or not and I didn't have time to get to Sam's Club, so I brought in a pack of 14 from the drug store.  Her aide was all happy because they had just run out and mom had one of the blue diapers with tapes on and the aide said that those are too small for her.

I'm puzzled because my mom is not the only large person there and Medicaid pays for the blue diapers (they won't pay for the briefs, which my  mother prefers), so right there I'm saving Medicaid money by providing hers.  But they don't have ANY extra large?  I guess they'll have to get some then.  I hate when they put the too-small ones on her because she feels like they're falling off (and they are - they're taped way below where they need to be) and she walks around holding her pants and the diaper up.  I'm going by there first thing tomorrow to drop off 2 cases of briefs and clarify the diaper situation.

Emotionally, my mom is all over the place - she is talking a lot about how she never had a mother (her mother died when she was 7) or she will talk about her mom being in "God's place" and she wants to see her.  This was the situation Saturday evening.  She was lying in bed and I will usually hug her from behind and talk and she likes that a lot.  On nights like that, I tend to burst into tears when I get into the car after the visit.  It's all just so sad and truly if I had to get dementia in order for her to be okay, I would do it in a second. 

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