Elder Care Diary

Up and down

Thursday, May 15

I’m happy to say that our parents have not had any major problems since my last entry. 

Genevieve, Ken’s mom, had been improving by leaps and bounds and really had us thinking that she might have a chance to come home.  She kept asking us about coming home and saying that she thought she was doing a lot better.  Of course, we would keep telling her that she had to keep working hard with her physical therapy and get a lot stronger before she could come home.

It seemed like she improved mentally to a certain level and then started to go backwards, not a lot, but just enough that we noticed she wasn’t quite as sharp. We had a really hard time determining whether she was walking on her own or not.  She’d, of course, tell us that she walks all over, but we never saw her walk and saw no walker for her to use. 

She usually will fixate on something that she’s upset about when we come in to visit her.  One time she was very upset about one of her nurses or aides.  We were never able to figure out who she was referring to, but she kept saying that she doesn’t think they like her.  She finally admitted that she wasn’t her normal self earlier and that probably was part of the problem.  She said she didn’t complain to that person anymore and that everything was ok now. 

Dealing with complaints

She also is a very private person and doesn’t like it when the male aides help her with her personal needs or problems.  She had been complaining to us so much about various things that we finally had to call social services to go over all her problems and concerns.  Initially, we had a very hard time getting to speak to someone who could give us some answers to her problems.  But, once we were able to speak to the proper person, they took care of all her issues.

One thing in particular that is kind of funny is that she always loved her breads and pastries.  And, for some reason or other, they had marked down on her diet preferences that she dislikes bread.  Genevieve finally asked us why we told them that she doesn’t like bread.  Of course, Ken and I never said anything about that.  Most likely, when she was way out of it, she probably kept refusing bread and they assumed she didn’t like it.  Now, she finally is getting her bread again and is really enjoying it.

We feel so bad for Ken’s mom

When we did speak to the woman from social services, she basically told us that Genevieve was not able to care for herself.  She is not able to walk by herself and she cannot use the bathroom facilities without the assistance of an aide.  This got to be a real problem for her.  Her legs started to retain a lot of fluid and the nurses were afraid that she might end up with cellulitis.

So, the doctor prescribed a diuretic to get rid of the excess fluid.  She didn’t understand why she was going to the bathroom so much and kept telling us that something had to be done to correct her problem.  She kept soiling herself and this really upset her big-time!  Well, of course, they did tell her about taking the medication to get rid of the swelling in her legs, but she didn’t remember it.

Anyhow, Ken finally asked the nurse about her using Depends to help her with the incontinence.  The nurse said it was a great idea, but it was extra for them to supply them.  We were just amazed that they didn’t use something similar to Depends so she wouldn’t soil herself.  We went out and purchased Depends and hopefully, that will be the end of that problem for her. 

On the very positive side, she has finally started to go to different activities.  In the beginning, she wouldn’t participate in anything.  So, we are happy that she is now participating in some social functions.  They do provide quite a few different activities at the nursing home for their residents.

It is going to be a long haul for Ken’s mom and for us

We have been visiting her every day since her initial stroke.  We only missed visiting her one time since February 7.  During the week, Ken and I take turns going to see her and on the weekends we go together.  It is difficult for us, but it does mean so very much to Ken’s mom.

My dad is doing real well.  He’s had no major problem since his back episode.  I’m really afraid to get too relaxed about his situation, because he’s very susceptible to a fall or a diabetic episode of some sort. 

I did just take him to see the dermatologist about a small growth behind his ear.  The dermatologist removed the growth to have a biopsy done.  The dermatologist said it is definitely skin cancer, but needs to have it sent out for biopsy to see exactly what type of skin cancer it is.  So, we’ll know in a couple of weeks what he needs to have done next. 

My mom is basically the same.  Dad woke me up earlier this week to help with Mom in the middle of the night.  She had diarrhea and some throwing up and was quite sick with it.  Any time she gets any kind of an intestinal episode, it’s much worse for her than it is for the rest of us.

I think she was probably on the toilet for a good hour or so and from being so bent over she felt like she couldn’t breathe.  I think she thought she was having a heart attack.  But, luckily, after about 2 hours, the diarrhea and throwing up subsided and she was able to go back to sleep.

Other than that, her health has pretty much stayed the same.  I think she is getting weaker, but that probably goes with her condition.  I feel so bad for my mom.  She wants to be outside working in the gardens and walking around so badly, but she just can’t do it. 

Life is such a wonderful gift

It’s so hard watching our parents’ health deteriorate before our very eyes and not being able to do anything about it.  We know it’s a natural process, but seems so hard and depressing on them and us, as well.  I guess in our minds we will always feel that we haven’t aged, but realize it’s the physical deterioration of our bodies that prevents us from doing things that we always used to do.

I just signed up this week for Social Security, can’t believe it!  But, in talking with the woman during my interview, I told her that we have my parents living with us and she said to me how lucky I am, at my age, to still have my parents.  And, she is totally right!

Anyhow, I just want to let everyone know how important it is to live every moment of our lives to the fullest and enjoy everything and everyone around us while we can.  Life is great and such a wonderful gift, even when it’s tough going!

The challenge of only children marrying

Friday, May 23

I was driving home from work late yesterday afternoon and heard this interview on National Public Radio with Chinese adult children who had no siblings.  It was so interesting to me because I never heard any remarks from anyone who was remotely in the same situation as Ken and me.

They spoke with one woman who is married to a man who also is an only child.  She was so concerned about her situation later in life when her parents and her husband’s parents are in need of their care.  She mentioned that she and her husband are totally outnumbered by 4 to 2.  She said it will be a major burden to them when their parents need their care.  No siblings to come in and take turns to help them.

Ken and I have found that to be a major problem.  It’s really funny, because when you’re young, that’s the last thing in the world anyone thinks about.  I know we certainly didn’t think about it, not that it matters when two people fall in love.  You certainly are not going to not marry one another because you’re both only children.  That would be totally ridiculous.  But, it really is a major issue down the road when all your parents are frail and ill all at the same time.  What do you do?!!

Ken and I have had a rough time coping with our situation

We don’t have 4 parents to care for, but 3 are enough!  It hasn’t been too bad, so far.  They seem to be taking turns with their real serious issues.  But, there could come a time when we will not know which way to turn. 

I think the hardest time for me so far has been when my father broke his hip (femur).  I was really dealing with 2 people at the same time.  My mom was totally dependent on my dad and was suddenly left at home without him.  That was and still is her biggest fear.  When he hurt himself I was totally new at care giving.  I still remember that very first day and first week of caring for my mother and running back and forth to the hospital to see my dad with my mom.  I honestly didn’t know how Ken and I were going to do it.  But, it’s amazing how one can adapt to a new situation and the longer you deal with it, the easier it becomes.

Unfortunately, now, I very rarely have time to myself…Ken and I both are in the same boat.  As for myself, when I do have a little time to myself, I feel guilty doing nothing.  I don’t know if this is normal or not but I can’t seem to sit still.  My other problem is when I do finally decide to do nothing, by nothing I mean read or watch a little TV, I fall asleep.  Is that exciting or what?!!

Anyhow, life is good and we both have come to realize how precious and special it is.  And, by taking care of our parents, we know that we are giving back to them for all the years they took such special care of us.

Now for an update with our parents

Genevieve, Ken’s mom, has been pretty much status quo.  Her biggest issue is an incontinence problem, which has been brought on by a diuretic they are giving her for fluid retention in her legs.  They are very concerned about her possibly getting cellulitis, which is not a good thing!   She’s been on the medication for at least 3 weeks now and her legs seem to be getting a little bit better.  Hopefully, they will be able to stop the diuretic in another week or so.

She still, everyone once in a while, comes out with some off the wall remarks.  She did ask Ken last week, where he lives.  He described our home to her and told her about her apartment upstairs.  It seemed like she did not remember it.

The need for a patient advocate

We also found out how every patient in a nursing home needs an advocate, family member or someone looking out for their well being.  Genevieve lost her hearing aid last week and we had to really keep reminding them to keep looking for it.  Ken also had to speak to someone a couple of times about helping his mother put her hearing aid in her ear in the morning.  This is something that she can no longer do, but really needs so she can hear what everyone is saying to her.  Anyhow, there were a couple of things we asked the social services person we would like to have done for his mom and discovered they were not totally doing for her.  So, between discovering things that were or were not being done through his mom, we were able to go back and get them corrected.  We realize there are a lot of different aides and nurses that work in these facilities and that sometimes it takes a while for any sort of routine to set in.

A quiet Memorial Day weekend

Monday, May 27

We got through Memorial Day weekend without any major catastrophes.  It’s still hard to spend holidays without the rest of our family.  All of our holidays used to be filled with all kinds of excitement and chaos, which believe it or not, I totally miss.  I don’t like total calm and quiet anymore.  Anyhow, on Memorial Day we took my mom and dad with us to visit Ken’s mom.  We spent our visit outside in the garden area at the nursing home, which was very nice.  Genevieve was so happy to see my mom & dad.  We were so afraid she’d beg us to bring her home, but she didn’t say anything.  She does often mention about giving her a chance to try it at home. 

I have to admit that she is very strong.  I took her to the ladies room for the first time a couple of days ago and was totally amazed how she was able to pull herself up out of the wheelchair by hanging on to a grab bar.  I could tell that she is totally unsteady and not able to move around by herself.  The way she is progressing, she just might be able to come home again.  Right now, we just take each day at a time and address whatever problem presents itself for the day.

My mom and dad were also very happy to see Genevieve.  They didn’t know what to expect, but they were so happy to see her looking like her normal self.  We know they could not have handled visiting her, not even as recent as a couple of weeks ago.  But, we will now take them over to visit with her more often.  Genevieve definitely needs to see them.

My mom is definitely getting weaker

A lot of my mother’s problems are that she is losing her will to keep fighting.  I know she hurts a lot and gets totally frustrated trying to move around.  She has no interest in eating or doing anything socially.  I am hoping beyond hope, that when the new community center opens up in our township that she and my father will be willing to participate in some of the senior activities.  They both need something to take their minds off all of their problems. 

My father still has to deal with a skin cancer issue behind his ear.  We were told that it’s not the bad kind of skin cancer and can be cut out.  We will find out in a couple of days what the doctor intends to do.