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Amyb

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Posts: 7
Reply with quote  #1 
So my 84 yr old mom was pretty sharp (playing scrabble etc) until about 4 weeks ago when she fell/and had a uti. She went to her primary care doc who saw that she needed to be rushed to the ER . (Mom has severe arthritis and can hardly walk btw) anyways she went to the hospital and they gave her antibiotics for the uti but before she could be properly diagnosed as to what exact infection she had, in her craziness of the uti -mom checked herself out of the hospital. We were all shocked. So everyone (her caretakers, myself) tried to talk her into going back to the dr and she finally agreed to go on a Wednesday when she fell on the Tuesday before! She was once again rushed to the hospital where they thought she had a brain bleed. She was acting very confused still. She does have very bad heart disease congenital heart failure ? . So anyways they did MRI and catscans and determined that she does not have a brain bleed. She is now in a rehab - is done taking her antibiotics for the uti and head wound but goes in and out of confusion. Does this mean that she will forever be this way? I am trying to accept this but am having a hard time. Everytime I call the rehab they give me a different story as to how she is but I have not really been able to talk with her. I know I should go visit her.. I will go but it's been so stressful and I don't have a car and I just needed some time to accept this . People are starting to make comments to me because I haven't gone to see her (I did when she was in the hospital) as it was quite easy for me to get there. Now she is far away in terms of public transportation. I have also been fighting with my one sister who lives in la and hasn't come home at all. Is it so wrong that I take a couple of weekends to take care of my own stress and sanity before I can deal with mom? People make comments but they really don't understand the dynamics of our relationship anyways . I love my mom but we never did things together - just chatted by phone was normal . I don't know I feel so bad about my mom being so old and sick and now with the people pressuring me and the guilt I feel - well I feel worse! Can anyone relate?
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Splotchy
Reply with quote  #2 
Amyb,

I think many of us can relate.  It sounds like you are feeling very overwhelmed and confused right now. I think that is pretty understandable when your mom is in rehab and you don't have a car and other people are pressuring you to act.  When you have a lot of stress in your life, as you do right now, it can often be difficult to make decisions or act. Our brains get so overloaded by stress chemicals and fears that we cannot function well.

Whenever I am in this type of situation, I try to quiet my brain down (by prayer, journaling, music, exercise, or whatever works) and then rationally see what the most important priority is.  If it's taking care of your own health, then make a plan to do that first.  If it's taking care of your mom, then make a plan to do that first.  Put together a timeline of all the things that have to be done, and then do your best to do them.  Don't worry about what others think.  People will always have opinions.  If they are genuinely kind and supportive people, it's good to listen to them, because they may have your bests interests at heart, but if they are just busybodies, let them have their say and walk away.

As far as your mom's wellbeing, what does she need right now?  If she is confused, then maybe she does need someone to check on things in person.  If that cannot be you because of health issues or car issues, then perhaps you could enlist of the help of other people to go in your place.   Or maybe you could ask one of the people who tell you to visit her that you need a ride.  Or maybe you could tell them you would love some company to visit your mom because things are pretty stressful.   If not, is there another way to get there (Uber, call a friend, etc.)

As far as the guilt goes, I think that is often part of the deal with caregiving. I think the best way to manage it is to decide if it is legitimate.  Sometimes we feel guilty even when we haven't done anything wrong, and sometimes we feel guilty because we really have done something wrong or failed to do something we should have.  If you are confused about which guilt is operating here, you may want to talk to someone you trust and have them help you navigate the guilty feelings.

After that, my recommendation is to find the "next best right thing to do" is and just do it. Good luck and do take care.

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Olderdaughter

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Posts: 9
Reply with quote  #3 
Amyb,
I can relate to you.  My mom is not in that good of health either.  Guilt does play a role in all of this but you have to minimize it as much as you can.  I journal.  It works for me.  I also take lots of walks to help out with the stress and guilt.  I am the oldest daughter and my mom plays my sister and I against each other.  My only sister and I do not speak to each other.  My mom does nothing to help in that situation.  I do not have anyone to vent to that truly understands and that in itself is hard.  At least you have someone to talk to.  Do the best you can with the transportation part of it.  Call the facility and ask for written information from them since you are getting the run around via the phone.  If you are the main care giver then you should be able to get information from her records.  Hope that helps.  Wishing and praying the best for you. 
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Amyb

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Posts: 7
Reply with quote  #4 
Thank you both for responding. I'm really glad I found this message board because honestly older daughter - I really don't have anyone to talk to about this either - that can really relate! My sister and I are so different. I cry all the time and I have never seen her cry. She's kind of cold and gets mad at me when I talk about how sad I am that our mom is so sick. She and I although we grew up in the same house had very different relationships with our mom. I feel very alone. Also I'm so freaked out and worried nervous that I noticed even mom's caretaker that I used to be able to text with is kind of backing away from me. I am also thinking about journaling. I did for most of my life but then stopped for many years but I can see the value of taking it up again - if anything just so I can let out some of these emotions I feel onto paper and not to people that really don't care. I feel sad and lonely like a child even though I'm so not a child anymore . I guess we all have to go through this at one point or another. I just can't believe even though I'm older that I will one day probably sooner thN later not have a mom anymore. That's my mommy. So sad. It's probably also because I'm not married and don't have a boyfriend and honestly at this point in my life I don't even have that many friends real ones so I do feel very alone and sad 😭
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TaraG

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Posts: 20
Reply with quote  #5 
Amyb, it was so eerie reading your post because it sounds so much like my situation with my mom. Those who criticize you,for not visiting mom have no idea how difficult it is for you, logistically and emotionally. They won't know until it happens to them. And no not all of us have gushy "my mom is my best friend!" Type of relationships with our mothers. You do the best you can.
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TaraG

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Posts: 20
Reply with quote  #6 
Amy, i also see that like me, you are single (and childless?). I think that makes it much harder on us in terms of feeling alone. I have no one to talk to about my care taking struggles. Younger sister is too busy with her own life,,older sister told me she just doesn't want to hear about it -!! Needless to say, neither can help with actual caretaking either, not even to google medical info or call insurance companies etc. but they have plenty of criticism about what I do.

I also want to address where another poster suggested some of your guilt may be warranted, and I strongly disagree. Guilt is a useless, self-shaming emotion. You may feel regret about something you did or didn't do and you can then decide to take a different course in the future. But try not to beat yourself up with guilt about it. Having said that, I also struggle with guilt feelings and have to remind myself I'm doing the best I can. God knows mom made plenty of mistakes in taking care of me as I grew up so I might make one or two taking care of her now too... we're all doing the best we can
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Amyb

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Posts: 7
Reply with quote  #7 
Tara - yes I am unmarried and childless. I'm not even taking care of my mom but neither is my sister. Up until the last few weeks she was living in her own home with my dad (89 -hard of hearing - can't even talk to him by phone- and they both had people coming in and out but now I'm sure it will be a different situation. I live on my own . Luckilly my parents had some money - who even knows how much - but we (me) initiated hiring a social worker to help us (mom ) but really she is doing the things that my sister and I are not. The thing is I am the one who has organized and got the ball rolling on the social worker, we hired an elder attorney (all highly recommended by a family friend we totally trust!) I call my mom's caretakers, I call the hospital, I have called the rehab every day. I organize everything. I asked my sister who lives in Los Angeles to do one thing and she still has not done it. She says she's here for me 24/7 but she isn't . She keeps calling me names and argues with me about every little thing and I honestly think it's because she must feel extremely guilty. She hasn't done one thing. And you are right we are all doing the best we can. It's just hard when your one sister is so ungrateful and mean. I think I'm enabling her because I report all the info on mom to her so she doesn't even have to pick up the phone . Meanwhile I am so grateful that I am not mom's caretaker. I and my mom knows I am not emotionally or financially able to be her caretaker. I don't think
I could handle it. It's too sad and it is taking me a while to even accept the fact that my mom is confused and may never be the same person again . Ugh [frown]
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TaraG

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Posts: 20
Reply with quote  #8 
Amy, I'm in an identical situation with my sister(s). They are both out of state and say "we are here for you! Why do you think you have to do everything yourself?" which they say in a mean and accusatory way. Well, because *I'm* the one driving an hour to mom's every other weekend AND using up my vacation days to interview yet another new caretaker, take her to doctors, open the door for the plumber / furnace replacement / roofer etc ... while they (as you said) won't even pick up the phone to do one thing ... and then Yes, throw it back in my face that "we are here for you!" I mentioned that perhaps sis could at least lend moral support and she replied that she is not my therapist so no, she can't provide moral support ... She gets mad if she finds out some minor detail, like mom's statin rx was changed, because I didn't "communicate" that to the entire family, yet she won't pick up the phone to call me ... I feel very lonely and isolated and wish I could call sis just to chat, and then details about mom would come out in normal convo, but when I call her she doesn't answer or is too irritated and busy to talk, but again is mad when *I* don't provide detailed status reports. It has helped me to realize that most families have this same dynamic -- one kid gets to be the caretaker and the others function as critics. Yes, psychology, they feel helpless blah blah blah.But honestly.

Another component of this is the more I help mom the more attached to her I feel (despite being so at odds with her for most of my life), the harder it will be fore ME (esp being childless and single) when I lose her, and I'm the one having to sadly witness her decline. My sisters don't get that she is not the same vivacious woman she used to be. Overall, it is a karmic honor to be able to care for mom as she begins to exit this life. But I never realized that half of 'elder caretaking' is dealing with siblings ... but everyone I've talked to about this has had the same experience with their family members, if that helps any...
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Betty

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Posts: 1
Reply with quote  #9 

I just joined this site and reading the posts in this thread has struck a chord with me.  I am also single, no children.  My mother has been diagnosed with early dementia.  She and I have had, at best, a strained relationship.  I have always been a disappointment to her as a daughter and she was a toxic presence in my life. So, I moved away and I didn't see or speak to her for several years.  Then about a year ago, I got a call that my mom was in the hospital because she had fallen.  I went to see her and was heartbroken at what I saw.  My mother is not the same person.  In some ways, she is better - childlike and happy.  In other ways, she is worse.  I got her out of the hospital, signed her up for managed care, set her up with a home health aide, etc.  None of this was easy - it took several days, a lot of frustration, endless red tape, etc.  And I resented doing all of it.  The year since has been hell.  I live over 200 miles away but everyone – the home health agency, my friends, co-workers, doctors – expects me to drop everything and take care of her.  The HHA and insurance company call me constantly to complain about my mother.  My friends and co-workers keep asking me how my mother is doing and when am I going to see her next.  (I know my friends/co-workers are just trying to be supportive, but whenever I say that I have no plans to visit my mother, I get judgmental looks and comments.  No, I am not imagining it.)  Adding to all this, my mother is being as difficult as possible.  She does not trust anyone.  She refuses to let the HHA into her home so I get angry calls.  One agency has already quit and I’m afraid the new agency will, too.  She won’t use a cane.  My mother refuses to wear a diaper so she pees all over the place, even in public.  He home is filthy but she won’t let anyone clean it.  (Seeing her living conditions was particularly distressful for me; when I was growing up, my mother kept the house spotlessly clean.)  All her clothes are dirty and smell bad but she won’t let anyone do laundry.  And just to add another level of frustration, my mother and I literally do not speak the same language.  She is an immigrant and never learned English, whereas I grew up here and English is the only language I speak.  I know enough to ask her if she’s eaten, if she slept well, if she feels ok, etc. but nothing more complicated than that and I hardly understand a word she says, partly because of the language and partly because she now slurs and/or is incoherent.  The language barrier is a HUGE obstacle.  I tried using Language Line but that “service” is a JOKE. 

My mother has no one else to care for her.  She has no friends or relatives or even acquaintances. TaraG – I identify completely with your sentiment that the more you help your mom, the more attached to her you feel despite having been at odds for most of your relationship.  I am so angry with my mother for putting me in this situation although, rationally, I know it’s not her fault.  And I KNOW when her time comes, I will be devastated to lose her.  Everything I do or don’t do makes me feel guilty.  Yes, I am in therapy but it doesn’t really help. 

I have considered putting my mother in assisted living but I know it will break her spirit and it’s not as easy as it sounds.  I would have to find a facility with at least some staff that speak her language and then I would have to pack up her apartment (she's become a hoarder and I have no idea where I would store anything), set her up in the nursing home, deal with the insurance, etc.  All of this requires money and time, neither of which I have to spare. And I literally do not have the words to explain any of this to my mother. 

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TaraG

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Posts: 20
Reply with quote  #10 
Hi Betty,
Wow - that's a lot. My father had dementia. We kept him home until he didn't know us anymore and then he moved to a nursing facility. He was actually happier there than at home b/c was surrounded by people and activity (btw if your mother gets to this point, I don't think you would 'store' her belongings but rather hire someone to come in and clear the place out).

I have similar hygiene/housecleaning issues with Mom, but not as bad as yours. Family insists I hire a twice-weekly cleaning service but Mom barely tolerates twice monthly and I can't force her. So I have learned to accept that Mom lives much of the time with dirty dishes all around her, etc etc. It's just the way it is now. I tell myself over and over, "This is not forever. It won't be like this forever." In fact it's my mantra when I feel like I'm going insane.

What language does your mother speak? I had a friend caring for her elderly mother who only spoke Tibetan - !
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Olderdaughter

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Posts: 9
Reply with quote  #11 
For the group.
I have a question for the group.  My mother lives alone now since her husband died earlier this year.  She does not drive.  She has several health issues that limit her to how much she can do for herself. Her mobility is limited. She does not bath daily.   She has a narcissistic and very manipulative type of personality.  My sister lives in the same town as her and we do not speak.  Her choice.  My sister has ostracized most of the family and so has my mom. My sister does not want a relationship with me and my mom likes it that way.  I live one town away.  Not even 25 miles.  I offer to help when I am going that way.  

Okay here is the situation, my sister is doing everything for my mom but when she can not do something for her than my mom ask me.  (Sloppy seconds)  I have asked my mom to divide things up.  (Like I take her to the doctor appointments and my sister takers her to the store.  That way I would not have to deal with how great my sister is all the time and get an account of all that she does for her.  I want boundaries that is how I have learned to deal with her.  This is another boundary that keeps getting broken.  My mom has my sister in high regard right now but who knows what next month may bring.  It may be my turn again.  I have seen this before.  My mom is all about who can do for her on her terms.  I am to the point I do not even want to talk to my mom.  She has a doctors appointment coming up and told me my sister could not do it.  She wants me to take her.  Any ideas?  
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TaraG

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Posts: 20
Reply with quote  #12 
Sounds like you and your mom both want things on your own terms, so who wins? Sibling issues make elder care difficult. I try to swallow my pride and be open-hearted and emotionally generous. i try to remember I am taking care of a frail and ailing person who understands she is losing her power and soon, her life.
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Amyb

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Posts: 7
Reply with quote  #13 
I think you just need to do what you will feel comfortable with. I mean after mom has gone , will you have regrets or will you feel that you have done all that you could given the hostile like circumstances. My sister lives in another state and never comes home to see my ailing parents while I deal with most of it. It makes me mad but I think to myself - it's her life and she has to live with her behavior. If she feels guilty after our parents are gone then it's on her and if she doesn't then so be it. It's her life.
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StrongMaple

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Posts: 17
Reply with quote  #14 
I agree we have to look after ourselves first or we are no good as care givers. My Dad was in hospital for 5 months recently and the stress almost put me in there myself. I had to take breaks or I couldn't go on. I worried if he was getting his pills on time and being transferred properly but I had to let it go until I could be well enough to return. It was both difficult being there and staying away on a break. Just take it one day at a time or one moment at a time. Listen to yourself and what your needs are and go from there. Try not to listen to the critics in the peanut gallery.
My main focus is to look after me and my Dad. What other family members choose to do or not do is not going to concern me as much as I can help it. I have to train myself to focus on me and my Dad. If it's not directly related to me or me doing what I can do for my Dad I stay out of it. I've been working on this a lot and I think it's helping. When I see the drama coming I just check in with myself and choose to refocus on what I'm doing and what's in my control to help my Dad.
Like they say you do you.
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Olderdaughter

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Posts: 9
Reply with quote  #15 
I went ahead and took mom to her doctors appointment.  I am noticing a pattern.  I have noticed that if I drop by (after calling to ask if she wants company)  and offer to do something for her she finds something to belittle me about.  If however, I go to her when she wants something from me (take her somewhere) we have a better time together and she is not as critical of me.  (What I wear, etc)  She always tells me how great my sister is and what wonderful things she and her husband have been doing for her.  I just listen and bite my tongue.   I only live in the next town.   My mother is very controlling and wants everything her way.  I do not like all the mind games.  I would like to have some clear cut boundaries with her but with a narcissistic person, I am not sure if that is possible.   I feel that it would be better to go no contact with her.  Has anyone done that on here?   I might be on the wrong forum.   
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