Author Topic: You're invited to my pity party  (Read 3904 times)


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You're invited to my pity party
« on: October 19, 2011, 09:11:51 AM »
Sorry to be a downer. I'm hanging my own pity party decorations and feeling sorry for myself. "pfffffst!" That was the sound of my pity party horn. ;)

Just having a bad day. My mom (86, blind, lots of physical issues) has lived with us for a year and I'm her 24-hour caretaker. She's been in the hospital for a week with a staff infection in her parotid saliva gland and non-functioning submandibular glands. Her face swelled HUGE and the three glands were rock hard. Doctor said dehydration made them sluggish and they calcified and got infection. She was on an IV antibiotic all week and the swelling is down/softer. But he doesn't think they will ever function properly again. According to him, it's not SjS. Just old age.

How weird...I'm the one with SjS but she ends up with no saliva glands. The poor thing is miserable. But thank goodness that I'm familiar with the problems of dry mouth and know about Biotene, lemon drops, water and the other little things that make it bearable for her.

She is now in a short term rehab center to get stronger, but I had to tell her this morning that she will probably need to go into a nearby assisted living or health care facility instead of moving back in with us. The amount of care she needs is overwhelming and I just can't do it myself anymore.

She is devastated and keeps trying to manipulate a "deal" with me. She is sweet and kind, so I feel like a monster but, at the same time, can't help being angry at her attempts at manipulation. My husband (who complains constantly about her being here) is racked with guilt and thinks I should reconsider. My aunts are furious with me.

I know that it is possible to bring her home and care for her longer. I could continue to deal with the physical work, sleepless nights, isolation, angry husband. I'm so depressed that I schlep around in my nightgown all day. Why get dressed? I have no friends and have gained 50 pounds (Thank you, Zoloft). Our home looks like a hospital. Her life has swallowed up my own. But I feel so selfish for wanting it back.

Gee...and now I feel a flare coming on. Big surprise, right?

Diagnosed June 2010.
Rheumy at University of Michigan Med Center. Age 52
Severely dry mouth & throat with difficulty swallowing, fibro, allodynia of the scalp.
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I am my own worst enemy...


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Re: You're invited to my pity party
« Reply #1 on: October 19, 2011, 09:42:29 AM »
Hi Deb,

Firstly, hand me one of those pit party horns...pfffffst!  With all you are dealing with, no wonder you feel so down.

I know how it feels to have to place a parent in an extended care facility.  Guilt, anger, fear, sadness, name it, I felt it.  Bottom line Deb, you need to do what is best for your mom, but you already know that.  ;) 

Once I moved my dad, I felt such relief.  I slept well for the first time in over a year.  I knew he had professional 24 hour care, with lots of opportunity for socializing and recreation if he was up to it.  I was no longer a caregiver.  I was his best friend.  And I saw him every day, giving me so many wonderful memories.

It's unfortunate that those around you, who by the way are not caregivers to your mom, are laying on a guilt trip.  Hang in there, Deb.   ;)

Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

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Re: You're invited to my pity party
« Reply #2 on: October 19, 2011, 11:19:59 AM »
Just having a bad day. My mom (86, blind, lots of physical issues) has lived with us for a year and I'm her 24-hour caretaker.

(((Dee))) - Being a 24-hr. caregiver for your 86 yr. old mom is a huge undertaking.

Taking care of an elderly parent is a whole different ballgame than taking care of a newborn baby who needs 24-hr. care.  Especially, when there are physical issues involved.

I know when my mom was having health issues from her Multiple Myeloma - it got to the point that Dad just couldn't take care of her physical needs.  If she would fall, he couldn't get her up by himself.  I know one time when I was there (I live out-of-state) and was taking her to her many doctor appointments, her legs would just give out and we'd have to find a chair real fast, or she would just sit down on the ground.  It requires a great deal of physical strength to take care of someone with physical issues. 

The decision was made by her doctor that she needed more care than Dad was able to provide.  Is it heartbreaking to put a loved one in a nursing home or assisted living place - yes.  Is it the right thing to do if you are just not able to care for them . . yes.  There, she would have nurses who are trained in medical issues to look after her.  She would be with other "mature" adults her age.

My Dad went there daily and had the evening meal with her in the dining hall.  Every day she asked to go home.  But, Dad knew she was where she needed to be and that he wasn't able to provide the care this facility could.

Would one of your Aunts be willing to have your mom move in with them for them to care for her?  I doubt it.  Unless they've walked in your shoes and experience the day-to-day struggles being a caregiver is . . . they have no idea what it's like.  Plus, throw your Sjogren's into the mix . . . . where you yourself have your own up and down days physically.  You have a lot on your plate right now.

Hopefully, Irish will be along and give her take on this.  She worked in a nursing home.

I'm sorry you're having such a rough day today, Dee.  You're caught in the middle and I know that's a rough place to be.  OK, pass one of those horn blowers to me, I want to make some noise too . . . . pffffffffst! 


Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D   (find our chat times here!)


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Re: You're invited to my pity party
« Reply #3 on: October 19, 2011, 11:42:15 AM »

I feel for you. I do. I took care of my Mom who was 56 and had stage iv lung cancer through her death at home. I have 4 kids, I had to shuffle them around and barely remember a lot of it. My hubby didn't say much as it was clear we had a very short time together.

I got sick just after I was done dealing with the funeral, emptying the house, dealing with the fallout with my niece of whom she had custody. Very ill and here I am. I have 3 other siblings who were all too ill themselves (mental illness), busy or couldn't afford to take time off or thought they had more time when I told them again and again we didn't. I am 35 years old and now I have to deal with this forever.

You DO have to take care of yourself. Could you take care of your Mom? Probably not to the degree that the nursing staff could. It is exhausting to provide 24 hour care and to be ill on top of it makes it worse. I am drier when I am excited or tense or upset.  In my case I was dealing with time only, it was a 4 month timeframe and that was all the time we had together so I sacrificed all I could. She could be ill and uncomfortable for a long time. Your health deserves attention and rest. You deserve to be a daughter, not just a nurse.

Perhaps she could come stay for a night or two from time to time. If you thought she and you could handle it, like respite. Because unfortuntely it is so hard to see that you need a break when you are ill, afraid and clinging to what is normal.

Please don't feel too guilty, and take some time to rest and know you have to put you first once in a while.

« Last Edit: October 19, 2011, 11:43:51 AM by 4Kids »
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Re: You're invited to my pity party
« Reply #4 on: October 19, 2011, 12:00:10 PM »

Deb, you have every right, responsibility and all honor in putting yourself and your family first.

There is no way to make everyone happy here.   EVER

It is important to remember that.  You CANNOT make everyone happy.  YOU MUST DECIDE.  Either way you may feel guilt.  But doing the best for the most people is not a bad idea.

If it is possible to arrange for care for her, outside your home, or possibly inside, do it.

I know this is costly.

I  have a LTC policy that will provide money for professional care for me at home or in a care facility, once I qualify by needing help with at least two activities of Daily life.  I'll bet your mother needs help with dressing, toileting, bathing, or transferring at this point.   That's when my policy would kick in for up to 6 years.

It only pays $4,000 a month, but that would go a long way to helping out when added to my Social Security and other sources of income.

I don't want to be in a care facility either.  But that's not the point.  The point is quality of life for those in my family that might have to offer care.

It is just a fact of life, Deb.

Please take care of your self and your loved ones.

Keep us posted



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Re: You're invited to my pity party
« Reply #5 on: October 19, 2011, 04:40:35 PM »
Thank you for the invitation. My daughter just spent six weeks with the other grandmother in her house, when I called to talk about my Sjögren's diagnosis. While I'm trying to tell her how sick I have gotten, all she is hearing is that I want to come live with her, her husband, and their three kids. I don't. She doesn't hear it that I am not saying that.

I have lived in a city for 50 years -- three different cities -- and I am now exploring the available options for low income elderly that are provided in either of two cities. She doesn't want me in the city that is an hour and a half away from her by car. I don't imagine requiring her to drive that drive in order to give me care, or visit -- well, maybe, I said, an overnight stay for a sleepover -- not for care. Another option for me is a three-year-wait way, but a 25 minute drive from where she lives. I don't see that as a live option, because there is no Top Hospital/Sjögren's Center available -- there's exactly one dept of rheumatology in the city that's an hour and a half away.

I expect to be independent, but I want to be near my grandchildren, too.

I'm closer to feeling pity for my daughter's confusion and her dilemma,  because of your post. Thank you.

There are government mandated programs for the elderly, that provide care in their/my own home(s), that provide assistants for activities of daily living like laundry, shopping, bathing, personal care, IN A HOME OF HER OWN WITH HER OWN STUFF! There are programs -- "Waiver programs"-- that are intended to keep people out of nursing homes except for short after-hospital care.

The place to start is in the "Corporation for Aging" of your city, or county, or state. Or if that doesn't work, start with the state Department of Aging.

What I'm trying to say is, with as much compassion as I can muster, is that there is a third way, that is not nursing home. It involves a level of care, that you can supervise. Your mother will complain about the care. Take her seriously, but also respect the dignity of the helper. You can go home, get away. For your mother and the helper, they are stuck together, sort of.

I'm new here. I am sorry to barge in on a pity party, but the dilemma struck a chord.

All the best with your mother,


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Re: You're invited to my pity party
« Reply #6 on: October 19, 2011, 08:44:19 PM »
First and foremost----take care of yourself-----and don't feel guilty about it.


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Re: You're invited to my pity party
« Reply #7 on: October 20, 2011, 10:09:11 PM »

Pass me a horn and a hat. Pffffst!

It sounds as if it's time that you make that tough decision to move your Mom into a new situation.  I know this must be difficult on you, and her.  But for her health and well-being, and for yours, too, it seems it would be best.

We can feel so much guilt just wanting some of our lives back, and really we shouldn't feel that way.  And your aunts; well, I'm sure they don't/can't understand all that you have gone through being a 24-hour caregiver.  It is exhausting and overwhelming.

Your mother may be upset for a time when she moves, but I can bet she will enjoy the attention she'll receive. Many assisted living homes are very nice. She can have others around she can interact with if she chooses. And the nursing staff can take care of her daily needs.  You could still be a part of her daily life.

My parents were so upset when they needed to move from their independent home at a retirement community into the main building/assisted living.  My Mom actually said they might as well put her in jail, and Dad insisted he was going to buy a house of his own again.
Mother expected me to tell the social worker that they were NOT going to move.  I couldn't do that and she was really ticked off for a time.  It took them about 3 months to adjust and then they liked it there better than out on their own.  They had activities to join in, all their meds and laundry and meals were taken care of; they decided the "pampering" was pretty good.

As you must know, this would be best for your Mom in several ways. You have certainly done your part, and now you can be more part of a support team for her than doing it all yourself.
Take care, dear.


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Re: You're invited to my pity party
« Reply #8 on: October 21, 2011, 12:08:04 AM »
Deb, if you are in the area I think you are, there are very decent facilities to care for the elderly there.  My cousin still lives in TC, but as a single woman, the care etc of her parents fell to her although she had a career in county govt.  My aunt and uncle lives to be 90 and 95 and passed away 5 weeks apart.  My uncle a week short of his 96th birthday.  I miss going up to visit them.  Lucy

Liz D.

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Re: You're invited to my pity party
« Reply #9 on: October 21, 2011, 08:17:28 AM »

I feel your pain!!  My father had to go to a nursing home after my mother cared for him at home for many years. (He had Parkinsons.)   My mother was sick herself and close to a nervous breakdown.  I was constantly helping her, but I was limited since I didn't live there with them.  It got to the point where it was the doctor who refused to let him go home from one of his hospital stays because he saw the fragile state of my Mom.  He said just give the nursing home a try for 2 weeks so you can get some rest.

Well, in those two weeks, my mother realized that she could never take him home.  It was the most heartwrenching decision we made together.  I can remember crying for days and was ashamed to tell my friends that my Dad was in a nursing home.  (Until someone is truly a caregiver, they DO NOT understand!)

In retrospect, it was definitely the right decision.  My father was a very easy going man and NEVER complained -- that certainly was helpful.  My mother was now a much more relaxed person without giving him the constant care.  She went every single day to visit and have dinner with him.  We still did a lot of his caregiving while in the nursing home during our visits.  I always washed and maintained his feet and I would shave him so the nursing staff wouldn't have to.  The staff knew we were a family who cared and because of that, I am sure he got a bit of extra attention.

Then seven years later, I had to be the one to make the decision to put my aunt in a nursing home.  Another gut wrenching decision as she was begging me not to and said she could live alone.  But she had Alzheimers and had already started a fire in her senior citizen housing and was causing a ruckus with the neighbors because of the hallucinations she was seeing.  Again, another guilt fest and crying for days on end!!  But she managed to get used to the nursing home and adjusted really well.  She realized they fed her every meal and that was enough for her to be happy.  Again, they took good care of her because my sister and I were there twice a week helping with her care.

I don't mean to go on and on about my stories, but I wanted to share them with you because I know that awful feeling in your heart right now.  It is a feeling you never really get over, but it is still the proper decision to make and you will sense a feeling of relief once things get "settled".  One thing I learned from my experience is that the common perception that people are 'dumped' in a nursing home is MISCONCEPTION.  I met MANY families in my years at nursing homes that were all in the same boat as I was and truly cared and were there regularly to help and visit.  But it is that going home at night and knowing someone is looking after them that keeps us sane.

I wish you all the best with your decisions and that you will find comfort.  Remember to think of your own health problems and your husband's feelings, too.   Your husband should be the first person you think of after yourself. 

Liz D.
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Re: You're invited to my pity party
« Reply #10 on: October 21, 2011, 09:39:37 AM »
We had to put my daughter's grandmother (my late former husband's mother) in the nursing home and there was much weeping and wailing and gnashing of teeth. She was whining and moaning about how awful we were being to her, taking her home and her life away from her, etc., etc.

Now she absolutely loves it there! When we call to let her know we're stopping by she'll say, "Oh, we play Bingo from 11 to noon, and then we eat lunch. So don't come until at least 1:30." Heaven forbid we should interrupt one of the parties there!

While the transition and drama was going on I turned to my then-25-year-old daughter and said, "If the time should ever come, I want you to know that I won't fuss like this. I want you to put me in a nursing home. I never want to be a burden." She looked at me like I was crazy and said, "Of course!"

Jeez, she could've put up a LITTLE fight.
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Re: You're invited to my pity party
« Reply #11 on: October 21, 2011, 09:42:55 AM »

While the transition and drama was going on I turned to my then-25-year-old daughter and said, "If the time should ever come, I want you to know that I won't fuss like this. I want you to put me in a nursing home. I never want to be a burden." She looked at me like I was crazy and said, "Of course!"

Jeez, she could've put up a LITTLE fight.



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Re: You're invited to my pity party
« Reply #12 on: October 22, 2011, 05:15:16 AM »
My mother will soon be 100, so I know  about all of the 'guilt' issues with the care of an elderly person. It was never my mother who tried to place guilt on me, it was the rest of my family. They cannot accept an invisible illness :0). Since in the past I was always the one who stepped up, they still expect it.

Please remember this: you matter just as much as your mother does. If you are even close to the condition that I am in, you cannot take care of her and it is not your responsibility to do so. It is very hard to say: 'I cannot do it anymore, and I am not going to do it anymore.' There are so many ways that you can continue to show your love and honor to your mother. I feel really bad for you because I know how hard this situation is. Sometimes, in this life, we have to just take care of ourselves.

One other point I wanted to mention is that sometimes, those who are elderly and sick find that they are actually happier in a home of some kind where all expectations are lifted from their shoulders as well, and they often have a chance for a renewal of some social life.

Take care of you. You are not alone. There are so many of us in the same situation.


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Re: You're invited to my pity party
« Reply #13 on: October 22, 2011, 01:14:12 PM »

Liz D. and others make so many good points.  It is difficult to watch a parent decline in health. and many times I think as daughters we feel especially guilty if we cannnot do what other family members expect us to.

When somone goes to assisted living, we can still be a part of their daily lives. As mentioned, the nursing staff appreciates anything we can do, and we have a great sense that we are still being active in our loved ones care. 
When my mother became very ill, I was there to feed her lunch, rub her back, and sit with her.  But, I never could have handled taking care of her 24/7.  She needed much more physical/medical care than I could have given.  And I still felt a tinge of guilt every day when I went home, which I shouldn't have.  We need a bit of time for our own lives. 

I hope all our stories can give you some comfort.  You are not alone in your feelings.  Many of us have gone through something similar or are dealing with it now.


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Re: You're invited to my pity party
« Reply #14 on: October 22, 2011, 08:18:20 PM »
dee, I feel your pain over this decision. I only had one parent in the nursing home and only for several weeks but it is hard.

The bottom line is you have done your best and done it while being in poor health and enduring a long distance move. I know that moving in itself is very upsetting ---whether you want to move or not. Any time we have to make changes in our life our stress level goes waaaay up. Not only that, it takes a year to find everything and to get all the addresses, etc changed over. It is just a nitpicking nightmare!!!

I want to share some experiences that I had while working as a charge nurse in long term care and in assisted living. To being with---the people who want to come to the nursing home or assisted living are few and far between. Everyone thinks it will be the end of their life. I can't begin to tell you how much staff had to work with the guilt ridden, sobbing, upset relatives over the whole shooting match. As it turns out much of the time the patients end up loving it. They like talking with the young staff and getting more attention than they did at home.

Remember that at home there is usually only one or two people who can  pay attention or tend to their needs. At the nursing home there is a change of staff every 8 hours and that helps big time. At home no one can do the 24 hour/7 day a week thing.

There are also activities and church that they can go to. It is also very interesting to watch how people will align themselves with other residents. Usually the new people are of great interest to the others and soon the women will be sharing past histories of their past lives witih each other.

Dee, you have been so tired and at the end of your rope many a time. It is time for you to take time for you and your hubby. You need to get rested up and get your house settled in the way you want it to be. Once you get your life in order you will find it much easier to cope with all the family that is bugging you. Also, you will have a great time going to visit your mom plus you will get out and meet some new people.

Just getting out and meeting people will make life much easier for you and more fun. There is a season for everything and for all of us. You have done your work well this past year and now is the time for a new season for you.

If your aunts continue to drag you down then maybe they should offer to care for your mom. It is really easy to criticize someone for not doing what you think they should do. However, your aunts have no clur what you are enduring with your health issues and have no right to expect more of you than they do of themselves.

I hope that I don't sound to hard core---you know me by now as I usually don't sugar coat things. Please be kind to yourself. Just know that the nursing home staff will take care of your mom and if need be during times when she is more ill you will be able to stay off and on and share in her care.

Because you aren't the full time caregiver you will have a more open mind about issues and be more able to cope. If you take your mom back it may be that you will end up sharing a room with her in the nursing home. Your first duty is to your husband and your family. Hard to believe, but life does throw us all these curves and rough decisions. Once the decision is made and you get some rest things will look brighter.

Also, remember that all parents beg and plead and do the guilt trip with the kids when the nursing home is mentioned. It is part of life these days. Your mom knows deep down that she needs to go to the nursing home but she will just keep on trying "one more time" to see if she can wear you down. Please take care of yourself now. Irish ;D