Hi, I 've worked as a caregiver for 12 years. I've seen everything from LTC, Ahemizer's, Home Health, Hospite. I've recently had to move in with my mother. I'm a single mother, with a 16 years old daughter. My daughter has ADHD. My mother is in the early stages of Ahemizer's. I think my mom is in the second stage. My mother has always been my rock. My dad passed away 10 years ago. I have a brother; but he seems to think taking care of mom is my job. So he never comes to see her. He never helps me with her. So I'm on my own. The mother daughter roles has turned. I have a 80 year old mother; that acts like a 5 year old. It's very hard! I worry about her. I have to work, and make sure my daughter gets to school. I'm afaid  to leave her alone. She forgets to turn the stove off. She loses everything! I'm tired and scared. I worry about my mother, daughter.  I don't know what to do.

  I have another sibling dilemma.  I hate to be a complainer, but I'm at my wits end and feel like working on impulse which is never a good thing.  So any advice you can give me would be appreciated.

My mother has continued to leave hate messages on my phone.  Daily, several times a day.  I ignore them and don't respond to them because it hurts so bad (even though I know dementia is what it is) and it would end up in an argument.  As a result, I haven't been to mom's in a couple of months.  The only thing she talks to me about is sneaking into her apartment and taking things or coming in at night and crawling around on her bedroom floor anyway.  It always ends up in her hanging up on me or my leaving her apartment angry. She lives in assisted living and so I know she is being cared for  is safe, 

Today I get another message from her saying that she and my sister have decided that my sister would take care of her for at least a year.  My sister lives in Illinois, a 6 hour drive from here.  I deleted the message without listening to the rest of it because it cut like a knife.   Why can't my sister, who knows so well mom's dementia tell me?  We just talked last week on the phone about mom's birthday and her coming down to stay w/me.  She knows what I'm going through yet she placates mom by agreeng w/whatever it is she says and makes me out to be the bad daughter.

Well, the knee jerk reaction is to rip off an e-mail to my sister and ask her why she didn't have the decency to call me herself.  I know it will only cause more problems, so I probably won't do it.  I need to cool down and deal with the hurt and anger I'm feeling first. 

I really don't want to go to my mother's birthday w/her next month even though my sister "extended the invitation"  to me after my mother asked her to.   How wrong is that feeling (getting an invitation)?  I just want to avoid them both.  Do I have to acknowledge the message?  What do I do about my feelings w/my sister right now?

Taking a deep breath...

Judy

Dear brydmommy and others,

If you could advise me on this I would forever in your debt. 

I moved back home 10 years ago when my then 73 year old wonderful Mother was diagnosed with the cancer myeloma of the spine. Both of my brothers had moved away and although I loved my life, I'd promised her 13 years earlier that when she needed me, I'd move back.  I did.

Mom made it through the radiation  but her back was damaged by the cancer...we went through everything with the doctors to help make her pain bearable. Needless to say I took care of shopping, laundry, dr visits. all while I worked full time. I didn't begrudge my decision, my mother was also my best friend. fast forward to two years ago when she could no longer stay in her own home.(she always had maintained that she would do this when her health required it.  We visited the independent communites carefully and I moved her into a beautiful one around 40 miles from my home. Distance, yes but the very best.  

lots of time spend being the cheerleader, always being with her for holidays and special occasions, taking care of every need she could no longer take care of herself. many many holiday and vacation hours ( I always banked that time for Dr. appt, emergencies, etc.. never had a vacation) I used for helping my mother.. no real problem there.

Like so many my brothers who is my mind owed so much to Mom... the best mother, mother in law, grandmother, throughtful, great gifts given.. etc etc.. Still I had to shoulder all of mom's needs.. In my opinion there weren't (in her words) too busy with their lives.. they were self centered _______well place your choice of word in there next.

Last Xas mom fell ( after many falls due to medications) and broke her hip. They couldn't operate but had weekly xrays and appointments to check the progress-it healed. She never regained her ability to walk and had been in a chair since that time. We also had to hire on help to assist with her daily routine (very expensive) but I'd made a promise to myself years ago that mom would never be placed in a nursing home environment. Like everywhere else they are wretched and expensive.

This past april, my job of 8 years was eliminated and with Mom's deteriorating health, I decided to use my severence and profit sharing to enable me to take care of mom as a full time job. I had staff paid to check in and help out during the day but it wasn't enough since she started falling ALOT. Rather than add more expensive staff (and the screening process is brutal) I started staying with her at night to help her up several times safely to the toilet, get her going in the morning, the staff would bathe her and I'd run off to do medication runs, shopping etc until I had a break to run back home (45 minute drive one way) to briefly care for my five animals and dash back to mom's for the night.

This continued until she was hospitalized on Aug 1 (turns out she'd developed pneumonia) and passed on Aug 3rd. She had conveyed for years that she really didn't want to live any longer and asked that I move her back to her home so she could stop eating to finalize her life.  I had this in the works right before momma died. 

Mom had said for years "quit your job and I'll pay you to take care of me." I'd never taken money and we never furthered the conversation.

Now my brothers want to settle her estate and I simply told them that I need to be reimbursed for only the time taken to care for mom since this past April. They reluctantly agreed I should but how in the heavens do I place a dollar value on what I did for mom??? I'm the executor of her estate (what a horrible education that continue to be not to mentioning time consuming) have been run  into the ground with trust details, plus executing at her request a fabulous party in her memory.... huge undertaking. It's only been 7-8 weeks since momma passed but my brothers are houding me for a figure for my reimbursement which I'm sure they'll want to cut down from whatever I propose. I explained that all those years of lost vacation and sick pay are not the issue nor to be included.

Bunch of money grubbing losers... mom left a generous estate to be split three ways...

Any ideas or directions would be greatly appreciated..

exhaustedly,

Mindi

Your right! It is very rewarding to be a caregiver, but long hours and lots of stress too!

What's interesting in this though, is that either our brother's or sister's whomever it is, wanted their mom's help when they needed it...right? Well, my belief is that our parents deserve in return from us, all of the help and support they gave us when we needed it!

As a medical professional, I do not need patients to reward me for what I may do for them...that comes from my heartfelt concern for their well being...I get my reward just knowing that I have done something to help them get better or have kept them out of harm's way!

  I have 4 sisters who live withing 15 miles and still get no help.  I've even asked each of them to give me 1 day out of the month to do what I need to do and got no response.  Visits are very random.  The only time I get help is when I am down and out with some sort of illness.  I don't understand this but I do know those of us who are the sole caregivers and feel we are doing this on our own will be greatly rewarded in the long run.  We can live with the fact we did our jobs and did them well!  It is the ones who choose to be in denial or just simply refuse to help out that will have to face they had no hand in the health or well being.  I admire every one out ther who has taken on this task.  It is not an easy job but a very rewarding one.  KEEP UP THE GOOD WORK!!!!!

 Ouch, that would hurt.

Dementia or no dementia, it sounds like the 3 of you are going 'round and 'round. Everyone has a role. You get to be longsuffering caregiver who had to report to her own sister (who could be more involved, visiting more often, taking on some sort of responsibility.) Your sister gets to be the "objective" medical professional/ daughter who gets to 'rescue' mom from 'oversensitive' sister. Mom gets to be cranky, though taken care of, to her primary caregiver, refusing to be thankful or pleasant, and she gets rescued by the other daughter! Her dementia contributes to her agitation, paranioa and hostility, but you and your sister don't have to be manipulated by it. What was she like when she didn't have dementia?

i'm not sure if you'd want to, but, i'd suggest that the two of you, sis to sis, sit down before an objective person such as a therapist, and do some processing/ discussing about your relationship to each other, and to your mom.

i have one sister also. When my dad had a massive stroke, my only sib and i sorted things out over time. she managed the nursing home fees, his taxes, all the financial stuff, which was a monthly task of tedious proportions.  My job was to help calm my step mom, and do battle with the staff, which means in my case using all i know as a medical social worker to find out what they SHOULD be doing and then finding some diplomatic way to get them to do it. Since he died, we sorted his stuff and divided it quite peacably. And i think one component of why it worked so well was because i had a therapist i ran things by. anyway, it helped me do the right thing when i felt resentment, and helped me to support my sister. Another reason is that our mom was difficult to say the least, died while we were young adults, and we have an understanding that we'd be there for each other since we pretty much raised each other. Now my sister has cancer and i'm doing all i can for her from a distance. i'm so glad we weren't distant during the times when mom and then dad were dying.

you have quite a burden on you. perhaps when you go to the reunion, you can talk to your sister, take a long walk with her, see if you can reach some kind of understanding on your own. i hope she values the quality of your relationship enough to spend some time on it.

and if mom and sis are non-cooperative, perhaps some individual support for yourself would be worthwhile. you can't control other people, but you can refuse to be abused, and be the person you most want to be. Easier said than done.

good luck with this and keep sharing. i learn so much from everyone's stories as i write my own.

jane

Hi Judy,

You're sister sounds so much like my brother did, when my mom was alive and had Alzheimer's. He never helped me either, or saw my mom until once two weeks before she died. He always told me that "you are so good with handling her." It was hurting to me also, that he didn't want to have anything to do with his own mother, who put him through medical school, bought his car for him, and paid all his expenses! But, you know as much as it hurt me, I learned to just not let it bother me. Sometimes, that can be really stressful, and as I see it, you have your mom to consider!

As far as your mom's behavior, yes Dementia will cause this, but I am not sure what she does understand and what she doesn't, as Dementia can have stages, and each stage can bring her closer to forgetting more!

It sounds to me like your sister may have some guilt about not helping out with your mom right now, and so by offering to drive up to get her, and take her to the reunion, may be her way of "helping you!" Even though, it may not be the best way!! It also sounds alot like she may not really be able to deal with your mom's Dementia either! I know that my brother, even though he is a doctor, still couldn't deal with his mother's illness!!

I think that your mother's actions towards you and what nasty remarks she makes, may stem possibly from her past, or maybe she is angry with someone from the past. I would do just as you are, take it with a "grain of salt!" Try not to let it bother you that your sister said that she would take your mom to the reunion, or you  could let her know that you were hurt by how she went about it!

I agree that your mom shouldn't fly alone, and I think that she thinks she can...remember when you thought that you could do anything by yourself without help? That is kind of what she is experiencing right now...and just maybe she is afraid of why her memory is not as good as it used to be?

The way that I see it, you are doing what is best for her right now, and I think you are doing a great job considering that you are also handling alot of this alone! Try to step outside the "box" and look at the big picture...don't let the "little things" hurt you..save that for what's ahead!

Hope that everything works out, and that all of you can enjoy the family reunion, and just have peace for one day for all of you!!

Hang in there, and please let me know if you need to vent...I will be here for you!! brdmommy