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Dozer

Registered:
Posts: 8
Reply with quote  #1 
Hello, I am new to this group. I completely broke down last night when my friend came to visit from WA.  Here is my story.  21 years ago, my dad started getting dementia.  He totaled his car and was no longer able to drive. For 16 years, my sister and I would go over to my mom and dad's house to take them out twice a week (twice for me, twice for my sister).  I was laid off from my full time job  5 years ago. I always say it was a blessing in disguise because at this point my mom needed more help with my dad as she was in her 80's.  So I started going over every day to help her with my dad.  My dad died 5 years ago at the age of 96.  My mom was 92 when he died and they were in their own home the whole time.  My mother continued to be able to be in her own home up until 2 years ago when she fell and broke her hip.  Since then, she has moved in with my husband and I.  My mother is the sweetest person in the world and has always sacrificed for her 6 daughters, and all she ever does is want to satisfy everyone else.

She is no longer able to walk on her own since she broke her hip.  So pretty much stays in her room because she feels like it's an apartment, instead of coming out with my husband and I in the family room.  She now is 96 years old, sharp as a tack, but has anxiety and depression which she is on medication for.  She even won't come out when the whole family is over as too many people are overwhelming to her.  Her anxiety causes her also to feel sick to her stomach all the time.  She always feels "ickish".

I get so frustrated and then feel so guilty for how I feel. These are some of the things that frustrate me the most.  She can't make a simple decision for anything.  When she does make a decision, it again is to satisfy everyone else (my sister's).  They come over a few times a week to give me a break.  If she doesn't feel good, she will force herself (not telling any of us how she really feels) to go out with myself and my sister because she doesn't think that my sisters will want to sit at my house. Then she will complain to me about how she can't keep doing this.  If I go out and they stay with her, she always tells me to hurry home.  My sisters always seem to get the happy mom, while I get all the negativity and complaining. Her taste buds seem to change from day to day.  One day she wants something so I get it at the store, she'll have it one day and love it and want more.  Then the next time she has it, it's too sweet and wants me to throw the whole box away, or whatever it may be. I constantly have to argue with her when it comes to giving her a shower. I constantly have to argue with her about drinking her water....it makes her feel full.  She only drinks one 16.9 ounce bottle a day.  That's all I can get her to drink. Personally since she's been here, I have no life anymore.  I can't just get up and go out with my husband unless someone is here to stay with her.  Which my sisters tend to come during the day, except one sister who comes every other Saturday day.  I feel guilty asking my sisters for more help.  None of them ever would have had her come live with them.  I have always said that I would never put my parents in a home.  Spent many days visiting Aunts and such to see how horrible they are.  So I feel like she is my responsibility.  Just like a person chooses to have a child, I feel that I chose to have her live with me, so therefore, my responsibility.  I wouldn't have it any other way and my husband is 100% supportive of her living with us.  But I just feel so drained, stressed, and like I just have no life.  I know one day when she is gone, I will be devastated, but right now I feel irritated and sometimes resentful, and I don't want to feel that way.  She can see the unhappiness in my face sometimes.  And I don't ever want her to feel like she's a burden.

I would appreciate and feedback or advice!  Thank you.
0
Splotchy
Reply with quote  #2 
Care-giving is a challenging job, even under the "best" of circumstances.  When someone else is your constant responsibility, it is natural to feel burdened. Please give yourself permission to have negative feelings.  They have nothing to do with how much you love your mom. There are many unpleasant and annoying aspects of this calling, so it would be next to impossible to not have negative feelings. 

Having said that, I think it is important to remember that a person on the tail end of life is on a naturally regressive journey.  This stage unfortunately often involves a steady stream of intense losses.  These may include the loss of physical strength, emotional regulation, appetite, and tolerance for daily life. These losses can be challenging to face, and often we (and our loved ones) try to pretend they are not there.  The losses may not be linear either...we may see good days and not so good days.

Perhaps your mom feels the need to put up a good front to others and become a "rallying mom" when visitors are there.  While she may intellectually know she needs to eat or drink or smile politely for visitors, her natural "aging mom" state is to not do those things. Perhaps the indecision you are seeing involves a conflict between two real but distinct parts of her (the rallying mom vs the aging mom)

I once read a writer describe this stage of life like birth.  When a baby is about to be born, it must let go of one environment and get ready to enter the next. I think it is no different for our elders.

Still, it can be hard to watch. It also can be confusing when they still sometimes have the strength to do what they used to do  Most of the time it is only a performance, but it gives us hope that there still is a lot of life left in them. When they are in a safe place, they may revert to their natural aging state of letting go. 

Using this lens, you mom may want you to come home often so she can put her "performance mom" away and just relax.

No matter what, it is still hard on you. I don't have any answers, but I did want to let you know that I understand. Please do whatever you can to take care of yourself.
 
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Splotchy
Reply with quote  #3 
P.S. If your mom's needs ever do exceed your abilities, please do not feel guilty for seeking outside help. It saved my life many times.

I have had many to care for many elders in my life.  Some we cared for at their home, some in assisted living, and now my mom is in a nursing home.  There is no "one-size-fits-all" solution.  We kept my dad and an aunt completely at home, and it worked because we had lots of outside help.  We hired CNAs and eventually had hospice.  My mother-in-law had Alzheimer's, and we were able to care for her at an assisted living facility once she became a wanderer.  My father-in-law stayed home until he broke his hips.   My mom, who has a drug addiction and a personality disorder, is in a nursing home because she needs outside care to keep her and others safe. I have seen facilities that are good and some that are not-so-good. (My mom has been in several different places...she's been asked to leave a few!) 

To reiterate, you are not an unloving child if you seek outside help when your mom's needs exceed your ability to care for her.  Sometimes the best care is from us and sometimes it is from professionals. I cannot do surgery on my mom, so if she needs surgery, I happily hand that task over to a professional.  





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Unregistered
Reply with quote  #4 
Dozer, I haven't had to care for my mom long term/ live in before but I have had to do it for a few days after an out patient surgery or something like that.  And let me tell YOU... AHHHH~ I was a mess! 1st let me start by telling you my mom will be 69 this Friday.  So she is NOT old (only in her mind)- I of course had to bath her which entailed washing her bottom for her & she decided instead of letting it go.. It's just one of those things that I know she appreciated and I had to do so lets just NOT talk about it and agree that it is what it is??? She told ANYONE that would listen, the cashier @ the grocery store is one that comes to mind.  UGHHHH, My mom also is consumed w/ anxiety, severe depression and I even think there may be a dose of personality disorder mixed in there too (just for a little fun) LOL.  She is still able to live alone however it is mentioned regularly about how I'd just throw her in a "home"... wouldn't I?  She always must have validation when she asks things like that.  She rarely gets out of her night clothes and house coat.  Generally sleeps about 16 hours a day & if I had to take an educated guess she probably smokes about 3 paks of cigarettes a day.  She has severe COPD and is on the bicuspid of diabetes.  That could be determined by how she does or does not change her diet.  Which she hasn't done.  She has NO friends to really speak of if she leaves her house it is to go to the doc, pic up prescriptions ect. but she tries to lump it into the same day.  Not trying to one up you.. Just really wanted you to know that I completely and totally sympathize with your frustration, guilt, exhaustion.  When I first joined these support chats I wasn't sure if it would really help.. But it does! So keep dumping on us cuz we will certainly need to unload at some point to.  Sending good vibes your way.  
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Dozer

Registered:
Posts: 8
Reply with quote  #5 
Quote:
Originally Posted by Splotchy
Care-giving is a challenging job, even under the "best" of circumstances.  When someone else is your constant responsibility, it is natural to feel burdened. Please give yourself permission to have negative feelings.  They have nothing to do with how much you love your mom. There are many unpleasant and annoying aspects of this calling, so it would be next to impossible to not have negative feelings. 

Having said that, I think it is important to remember that a person on the tail end of life is on a naturally regressive journey.  This stage unfortunately often involves a steady stream of intense losses.  These may include the loss of physical strength, emotional regulation, appetite, and tolerance for daily life. These losses can be challenging to face, and often we (and our loved ones) try to pretend they are not there.  The losses may not be linear either...we may see good days and not so good days.

Perhaps your mom feels the need to put up a good front to others and become a "rallying mom" when visitors are there.  While she may intellectually know she needs to eat or drink or smile politely for visitors, her natural "aging mom" state is to not do those things. Perhaps the indecision you are seeing involves a conflict between two real but distinct parts of her (the rallying mom vs the aging mom)

I once read a writer describe this stage of life like birth.  When a baby is about to be born, it must let go of one environment and get ready to enter the next. I think it is no different for our elders.

Still, it can be hard to watch. It also can be confusing when they still sometimes have the strength to do what they used to do  Most of the time it is only a performance, but it gives us hope that there still is a lot of life left in them. When they are in a safe place, they may revert to their natural aging state of letting go. 

Using this lens, you mom may want you to come home often so she can put her "performance mom" away and just relax.

No matter what, it is still hard on you. I don't have any answers, but I did want to let you know that I understand. Please do whatever you can to take care of yourself.
 


Thank you Splotchy for your reply.  I will read this daily to remind myself that it is ok to have negative feelings.  I just hate that I do tho, but will try to allow myself to feel them and know that it is ok.  Any suggestions or advice on how to let things go, like when I constantly have to remind her to drink her water, or argue with her to let me give her a shower?  As it is she will only let me give one to her once a week.  Or her eating.....she loves sweets and will not finish her dinner because she is to full, but then will immediately ask me for a cookie.  At 96 I guess she can have what she wants, she's earned that right, lol, but on the other hand, I guess I'm just trying to keep her healthy.  Any suggestions...should I just let it go and let her call all the shots?
0
Dozer

Registered:
Posts: 8
Reply with quote  #6 
Quote:
Originally Posted by Splotchy
P.S. If your mom's needs ever do exceed your abilities, please do not feel guilty for seeking outside help. It saved my life many times.

I have had many to care for many elders in my life.  Some we cared for at their home, some in assisted living, and now my mom is in a nursing home.  There is no "one-size-fits-all" solution.  We kept my dad and an aunt completely at home, and it worked because we had lots of outside help.  We hired CNAs and eventually had hospice.  My mother-in-law had Alzheimer's, and we were able to care for her at an assisted living facility once she became a wanderer.  My father-in-law stayed home until he broke his hips.   My mom, who has a drug addiction and a personality disorder, is in a nursing home because she needs outside care to keep her and others safe. I have seen facilities that are good and some that are not-so-good. (My mom has been in several different places...she's been asked to leave a few!) 

To reiterate, you are not an unloving child if you seek outside help when your mom's needs exceed your ability to care for her.  Sometimes the best care is from us and sometimes it is from professionals. I cannot do surgery on my mom, so if she needs surgery, I happily hand that task over to a professional.  





I agree.  I would definitely seek outside help to come in to our home to help.  Fortunately it is nowhere near that point yet.  I just pray that when it comes her time to go, I pray to God that he takes her peacefully and quietly in her sleep.  Of course I know that we would all like that!
0
Dozer

Registered:
Posts: 8
Reply with quote  #7 
Quote:
Originally Posted by Unregistered
Dozer, I haven't had to care for my mom long term/ live in before but I have had to do it for a few days after an out patient surgery or something like that.  And let me tell YOU... AHHHH~ I was a mess! 1st let me start by telling you my mom will be 69 this Friday.  So she is NOT old (only in her mind)- I of course had to bath her which entailed washing her bottom for her & she decided instead of letting it go.. It's just one of those things that I know she appreciated and I had to do so lets just NOT talk about it and agree that it is what it is??? She told ANYONE that would listen, the cashier @ the grocery store is one that comes to mind.  UGHHHH, My mom also is consumed w/ anxiety, severe depression and I even think there may be a dose of personality disorder mixed in there too (just for a little fun) LOL.  She is still able to live alone however it is mentioned regularly about how I'd just throw her in a "home"... wouldn't I?  She always must have validation when she asks things like that.  She rarely gets out of her night clothes and house coat.  Generally sleeps about 16 hours a day & if I had to take an educated guess she probably smokes about 3 paks of cigarettes a day.  She has severe COPD and is on the bicuspid of diabetes.  That could be determined by how she does or does not change her diet.  Which she hasn't done.  She has NO friends to really speak of if she leaves her house it is to go to the doc, pic up prescriptions ect. but she tries to lump it into the same day.  Not trying to one up you.. Just really wanted you to know that I completely and totally sympathize with your frustration, guilt, exhaustion.  When I first joined these support chats I wasn't sure if it would really help.. But it does! So keep dumping on us cuz we will certainly need to unload at some point to.  Sending good vibes your way.  
  Thank you for your reply.  I am sorry to hear about the issues that your mom has as well.  I have never joined a support group before and like you, not really sure that it will help.  But just getting the replies so far that I have has made me feel a little better.  I just need to learn how to not let my mood from dealing with this stress daily, affect my mood with everyone else.  Like I said, my husband has been 100% supportive with all this, but I hate having to dump on him all the time.  So I will take your advice and keep dumping on you guys! LOL.
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Splotchy
Reply with quote  #8 
Dozer,

I wouldn't let her call all the shots, but I do lean toward letting her eat what appeals to her, as long as her food choices don't produce a serious, immediate health issue (choking) or they don't create more work for you (constipation or dehydration, etc.).   As for drinking, my father-in-law was very reluctant to drink, because it was a hassle to get himself to the bathroom and he was afraid of having an accident.  He also hated adult diapers.  Does she have similar concerns?  Maybe a commode in her room might help.

As for showering, this is a big issue for many elders.  Is she afraid of falls?  Does she get cold easily? Is it a modesty thing?  Has she always been like this? 

Ultimately, I think we need to pick our battles, just like we do with our kids.  Sometimes we need to hold a firm line and other times, we can let go of things.

Just my 2 cents... 
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Dozer

Registered:
Posts: 8
Reply with quote  #9 
For the most part, she eats pretty good.  I give her breakfast lunch and dinner and try to  make sure that she gets everything she needs.  It's just irritating sometimes when she won't eat all of her dinner, because "she is full and feels icky in her stomach", but then asks me to bring her a cookie or something else sweet.  Which is fine, I want her to have those things that she wants also, but I thought she just said she was full and felt icky.  It's so frustrating. 

The drinking again says it makes her feel icky in her stomach and full.  As I mentioned I am able to get her to drink 1 16.9 ounce bottle of water a day as long as it has lemon and sugar in it.  but most of the time I have to remind her to drink it.  She doesn't have to wear diapers yet as she still has control, but she hates having to get up out of her chair to have me walk her to the bathroom.  I do have a commode that we have in the bathroom and then I move it to her room at night, but I figure walking to the bathroom during the day is the only exercise she gets, so I keep having her do that until nighttime.

Her showers are only once a week.  I wish that she would let me do it more often, but that's all she wants as it wears her out.  Then having to put her hair up in curlers, the thought of it wears her out as well.  She's not so much afraid of falling as she can't walk without my help as her balance is off.  She trusts that im not going to let her fall, so she's pretty good there, and I also have a shower chair for her in the shower.

It's hard to pick the battles as it seems everything I try to do to keep her healthy is everything she wants to battle me about.  She is 96, completely is as sharp as a tack.  Loves her makeup and creams and such and always like to look nice.  She had 6 daughters, I am the youngest at 53, and I myself never had any children.  It feels good to vent, so thank you for that.  And again from your first reply, I am reminding myself everyday that it is ok to have these feelings.  I just need to stop getting mad at her for these things and arguing with her.  How do I stop doing that?
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Splotchy
Reply with quote  #10 
To me, feeling mad isn't the problem.  Anger is often a completely appropriate feeling, especially when someone else is doing something frustrating, harmful, or challenging.  It's how we manage the feeling that is the key.  If you feel mad and then argue with your mom, it's possible that you are not actually managing your anger, and instead are trying to manage her. I have done this myself many times, hoping that I could convince another person to do what I wanted, so that my anger would go away.  As you have seen, that doesn't always work, and it often leaves us feeling even more angry  because it appears that the other person does not care about our feelings.

When others refuse to cooperate with my expectations, I have a choice.  I can keep asking them to follow my plan, which they may or may not do, or I can accept that I do not have any control, and then decide what my next step will be. Any emotion I have then becomes mine to manage.  If I expect someone else to do something to improve my emotional state, I am effectively giving away my power to feel better to someone else.

I have found that the most productive thing to do when I am angry is to allow myself to feel the feelings and then figure out what action I can take to productively manage the feelings  (walk away, journal, sing, pray, etc.) I also take action to avoid the problem in the future.  So if my mom were refusing to shower, for example, I might tell her that I was going to hire an aide and then do it.  
She still gets to choose her actions, and I get to choose mine.  As a parent of now-adult children, I learned a long time ago that people have free will, so all we can really do is decide how we will respond when they act, especially when they do something that disappoints us, angers us, frustrates us, or irritates us.  

It takes some practice, but adopting this mindset has created some healthy space for people in my life to make their own choices, and then for me to feel safe with mine.   


0
Mike Gamble

Super Moderators
Registered:
Posts: 55
Reply with quote  #11 
Great advice, Splotchy!
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Dozer

Registered:
Posts: 8
Reply with quote  #12 
Quote:
Originally Posted by Splotchy
To me, feeling mad isn't the problem.  Anger is often a completely appropriate feeling, especially when someone else is doing something frustrating, harmful, or challenging.  It's how we manage the feeling that is the key.  If you feel mad and then argue with your mom, it's possible that you are not actually managing your anger, and instead are trying to manage her. I have done this myself many times, hoping that I could convince another person to do what I wanted, so that my anger would go away.  As you have seen, that doesn't always work, and it often leaves us feeling even more angry  because it appears that the other person does not care about our feelings.

When others refuse to cooperate with my expectations, I have a choice.  I can keep asking them to follow my plan, which they may or may not do, or I can accept that I do not have any control, and then decide what my next step will be. Any emotion I have then becomes mine to manage.  If I expect someone else to do something to improve my emotional state, I am effectively giving away my power to feel better to someone else.

I have found that the most productive thing to do when I am angry is to allow myself to feel the feelings and then figure out what action I can take to productively manage the feelings  (walk away, journal, sing, pray, etc.) I also take action to avoid the problem in the future.  So if my mom were refusing to shower, for example, I might tell her that I was going to hire an aide and then do it.  
She still gets to choose her actions, and I get to choose mine.  As a parent of now-adult children, I learned a long time ago that people have free will, so all we can really do is decide how we will respond when they act, especially when they do something that disappoints us, angers us, frustrates us, or irritates us.  

It takes some practice, but adopting this mindset has created some healthy space for people in my life to make their own choices, and then for me to feel safe with mine.   


I completely agree with that, I get angry because I'm doing everything I can to keep her healthy and out of the hospital and she just doesn't want to do it.  Mostly the drinking water. And when she doesn't do it, I get mad.  Definitely it will take a lot of practice.  I just always seem to forget about trying to manage my feelings when i'm in the middle of it going on. [frown]

I did finally manage to get her to agree to let me make a dr. appt. for her.  We are going tomorrow.  Lately over the last week, she has been talking a lot in her sleep at night, calling me to take her to the bathroom more at night even though she's been drinking less water.  The last 2 nights, she has called me four times to take her.  Usually I get her up once around 3:30 and she goes, and then maybe she might call me one more time before we wake up.  So the last couple of days I've been tired with little sleep as unfortunately once I wake up, I have a hard time going back to sleep.  Over the last few weeks, she has started to "see things"....people, imagining she's polishing furniture and called me for a rag, different things.  So we'll see what the dr. says tomorrow.  I have a list of things to discuss with him.  I realize she's 96, and he always likes to say "due to maturity", but there has got to be a reason and something that can hopefully be done to help it.  If it's a Urinary tract infection or something that needs antibiotics, that is an issue too as a lot of antibiotics make her sick to her stomach.  She already feels that way all the time, but the antibiotics will actually make her throw up.  I just feel sometimes like I can't win.

Anyway, thanks again for letting me vent.
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Splotchy
Reply with quote  #13 
I think anyone in your shoes would feel angry.  You are sacrificing your time and energy to keep her safe, and she doesn't always cooperate.  It definitely is frustrating. When you throw interrupted sleep into the mix, it's a recipe for frayed nerves.

You have a lot on your plate.  And the additional stress of these new behaviors certainly doesn't help matters.  I certainly hope the doctor can provide some insight and relief.

Your mom is very lucky to have you in her corner. I hope things improve soon!
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Dozer

Registered:
Posts: 8
Reply with quote  #14 
So our visit to the Dr. yesterday showed that she has a UTI, which is what I was suspecting as I know UTI's can cause hallucinations. She just didn't have any of the regular symptoms you get with a UTI, until she was calling me 4 times a night to go. Her Congestive Heart Failure also showed that it was a little worse, so he's upped her oxygen from 2 to 3.  On the plus side, after just 1 antibiotic last night, she actually only called me once to go to the bathroom. [smile]

So my plan is to get her over this infection and then start the new medication he added for her CHF.  She has bad reactions to antibiotics, so I had to get anti nausea pills to go along with it.  He added Lisinipril (sp?) along with the furosemide, but 2 of my sisters had the horrible coughing that you can get from that, so i'm leary about starting her on it, when antibiotics already make her sick to her stomach.  So i'll wait for the 10 days for her to finish the antibiotics.

Thank you Splotchy for your kind words above.  My mom is very thankful and is always telling me so.  It's just sometimes even though they tell you, you still just feel like it's a thankless job.  But I know it's not.
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peachtree

Registered:
Posts: 9
Reply with quote  #15 
Sorry if I missed this anywhere, but do you have your mom use some type of Pad (I use Poise).  I also put a portable commode in her room, which I empty on the morning.  I don't want her falling at night, but I want to avoid UTs.  
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