Taking care of friend with stage 5 Alzheimer's. At my wit's end and want out to live my own life. Any advice?

gladimhere,
I went to see my friend's doctor, and she recommended to wait 6 months, or more, before going to visit.

My friend's daughters did not place that restriction. This doctor is very competent, and knowledgeable of what is going on.

Liesl, six months? Your friend has been placed, and daughters have stepped in. That is all very good. I imagine the daughters told you six months. Same thing happened with my Mom as your friend, threatening suicide (she always was a drama queen), and the facility asked us to stay away for a couple of weeks, hoping Mom would become more comfortable and accepting of staff that are there to help her. If you want to see your friend, I suggest you call the facility, they will not give you any information if you do not have a HIPPA release, or the medical POA. The call I am suggesting is to let staff know that you want to do anything that you can to help, if that is what you want to do. If they want you to stay away for six months, they may tell you that. But, quite frankly, I have never heard of such a thing. They cannot determine how your friend will be even in two weeks, it is take it as they come.

Just let them know what you want and are willing to do. Call and remind them each week, if that is what you feel comfortable with.

Hi folks.
This subject became a little bit too painful for me, and opted to stay silent until I could figure things out. Went to see the doctor, and was recommended to wait 6 months, or more, before going to visit my friend. It seems like an eternity, but, if that is what it takes, so be it.

I call the place where she is at, and find out how she is doing. Feedback is sometimes well, other times, not so well. Guess time will tell how this will unfold.

Thanks to each and every one of you for your suggestions. There is no way I could have made it through this without your help.

Glad it worked out. Sorry u can't see friend but maybe u should allow her time to adjust anyway. You want to enjoy ur visit not have her crying or begging to go home. Don't u just love it though, u took on their responsibility and they don't appreciate it. This happened to us. Drove friend and Mom to doctor visits. Then we found ourselves taking the daughter. It got overwhelming when my week off was spent driving everyone to doctor visits. When my daughter became pregnant, I told them four months before I started watching the baby that they would have to find someone else to drive. The mother was no problem but daughter got to where she was taking advantage. She has since passed away. Last time I saw her husband he wasn't very friendly.

Lies--
Hang in there. It's possible the daughters will relent and allow you to visit as they find caring for their mom to be a lot of work...and will (hopefully) realize that you are important to her well being. Congratulations on following through and self preserving...prayers coming your way for the daughter's attitudes to change so you can be a part of your friend's life. (These women sound pretty petty and unpleasant--IMHO...and this probably went just the way you thought it would.) Take care of yourself now and hope for the best.

That's a good question, gladimhere, and I have the same concern. I hit the facebook button, and it looked like it was going to post the entire thread to my facebook timeline. I would never choose to do that, because I don't want people in my life knowing I post to this site, and my name is easily recognizable. On the other hand, I don't care if my posts are posted on anybody else's FB timeline, as long as we don't share any FB friends.

What is the purpose of the new Facebook Twitter, Pintarest and LinkedIn buttons? I don't want my posts on those forums for the world to see!

Thank you for your sad but almost poetic update. It is so unfortunate that your friend is unhappy and that the daughters have denied access, but the placement decision was rightly that of the daughters and they bear the responsibility.

And so it went...
The baton was passed, and the daughters took over.
In a week, my friend was placed in a Memory Care Unit. She went off the deep end, is totally depressed, and talks about taking her life.
I cannot go see her, since I am not allowed.

As for me, I am living in my house...

What a great friend. I agree with everyone. You need to get the daughters together and tell them for personnal reasons u can no longer care for their Mom. Explain their mother needs mor help now than ur capable of giving. That she cannot be left alone so they need to have a plan by the endof August. If they do not do this, u will call someone who can. I don't think any child should be made to care for parents. But they should be made to find a safe place for them.

Update us when you can, Lies14! We're behind you all the way.
Carol

Thank you Carol Bradley Bursack! Your replying to this issue made my day. I am honored.

The power to effect change occurs in an environment which fosters agreement of purpose. That is the environment found in this forum. I am very appreciative to all of you for taking your time to discern and provide me the best course of action.

The next few weeks will play out the outcome of this situation. Please send your positive thoughts my way. I will need them.

You should not be in this role. Your friend needs more care. If you don't get a response in two weeks, after informing them by registered mail, then call protective services. Once you do that, their lives and yours will change rapidly.
In preparation, be sure to retain an eldercare attorney and remove all your items from her house.
Document the amount of time you are spending each day as well as the local rate for your labor.
Time to get really serious about your own life after caregiving.
Good luck
Ann

Hi Lies14,
gladimhere, Maggiemarshall and the rest have it down as do many others. You have done much more than even a good friend should have to do, particularly since there is family. I'd let them know that you are giving them one month to set up care for their mother. You can suggest that they contact the local agency on aging. If they don't, tell them you are calling adult protective services and then do it. Once you have done that, say goodbye.

You deserve a life of your own. Please do not accept any guilt from these people. You've helped your friend at your own emotional and financial expense all of these years. Now, it's time for them to step up to the plate. If they don't, the authorities will have to handle it.

Start planning your own life. Help with the transition in any way that you can but only for one month. Then, you are gone.

You are remarkable! Please keep us posted about how you survive this.
Carol

Liesl--
Good for you! heading forward!! Be strong and hopeful that is won't be as bas as you're thinking. You will very likely still be in your friend's life and you wil have your own. Take care--so glad to hear you are making strides forward!!

crickett33,

Thank you for your suggestions and giving me awareness of what may come this way. The unknown will always be there, however, I have friends that will stand up for me if necessary.

I am projecting to inform the oldest daughter next week, and see what develops.
I rather settle things without belligerence, but, I have no clue how all this will play out. Will be glad when all this is over.

Hello, liesl4 ~ i agree with MaggieMarshall, int hat contacting the Area Agency on Aging and/or the country's Senior Service's Dept would be less combative and more effective, especially since you're, not a relative, have no legal status, and despite your efforts over the years in trying to get her own children involved, they're just not interested. [You're closer, you're doing it ... they've got their own priorities, etc...] Ahh, but the comeuppance is that should anything untoward happen with your dear friend, you'd be on the wrong end of the 'blame stick.' If something were missing, if she passed and left everything to you: one never knows how things twist around when the family realizes how dire the health of their parent truly is. PLEASE just get a journal and meanwhile, document the date/time/person you spoke with and the topic: time to start documenting things, sadly. You, dear heart have been an amazing friend. Don't let the nonchalance and absence of her daughters take that away from you. Your hands are tied, and it is well over due the time to loosen them. We should all be so fortunate to be so well cared-for by a friend. Your devotion is making me weep ~ but please, contact the Area Agency on Aging to find the location nearest you [there is also a listing of services at www.seniorlist.com/ ] You may need to provide the entities with the names/phone numbers/addresses of the daughters. The AAA also has help available through Legal Aid, and they can advise you if you need to send a certified letter to each of the daughters advising them that you've contacted them. DO WHAT YOU NEED, please, to protect yourself, too. It's not unusual to suddenly find yourself being the one being served with retraining orders, etc. When you turn over your friend's care ~ be sure to have a witness acknowledge the fact that they witnessed you turning over the key., if applicable. How sad, but i am so very proud of you for ~ well, putting yourself in harms' way ~ to care for your friend. But it's her own relatives, daughters, etc., that have failed her. Definitely, not you. i'd be so very proud to have such a 'forever friend' like you. That is so very rare, but its time to reclaim your life, please. Cherish the better memories. Yes, they are there. They are the fabric of your devotion ~ and will hold your integrity and character in good stead. It's time for LIFE to bring joy to your heart. May God Bless ~ cricket33

savinggranny, freqflyer,
Thanks for your views on this matter.

There is no POA, AFAIK. My friend and her sister wanted me to get one, and I declined. BTW, my friend's sister was always of the opinion that I should move to my house. She passed away just a few months ago. Very unfortunate, because she wanted to help me.

The bills and all documented matters are all taken care by me, but she signs any checks or documents. Her signature has gone from very good penmanship to some sort of shaky almost illegible scribble.

The daughters live about 45 minutes away, maybe 30 to 40 miles north and south of where my friend lives.

As far as my health, I think I mentioned having flat-lined twice in the last five years, or so. My ticker does not work right, and I am 100% dependent on a pacer. The doctor has recommended more than once for me to change environment.

On a move out date, it will be the week of 10 August. The 'exit' letter making it official will be presented on 24 July.
I will have to slowly move back to my home little by little, as you mention.

The daughters will know what to do. Plus, the oldest has friends with the know how. I cannot move and also take care of helping the daughters. Don't have all that energy. Right now it feels as if I had been put through a wringer.

Liesl, my gosh with the current chest pains, etc. you might want to reconsider that October move out date and start slowly moving back to your home little by little....

If you have already notified the daughters of October 31st, send them a new notice that because of a newly diagnosed heart condition you doctor is highly recommending that you can no longer work as a caregiver.... and that you will need to move out as soon as possible, no later than August 15th.... you can do it, even if it means hiring a mover to help you for a couple of hours.

Better to get the ball rolling now to see how the daughters will respond. If they say they don't know what to do, give them names of companies that do Caregiving, names of assisted living [if your friend can still qualify] and/or nursing homes. If the daughters are like deer in headlights, you can do the logistics for them via computer, finding them names to call at the local council of aging.

Then after the fact, you can visit your friend as a "friend" instead of as a "caregiver".

Lies, does anyone have POA for her? How does she pay her bills? If I missed that in an earlier post I apologize.

How far away do the daughters live?

MidKid58, vicky64, Biglith, GardenArtist,
Thank you all for your discernment of the situation!!

To answer some of your questions, she can be alone for a period of time (2 hours +/-). As to whether she can be alone for an entire day without someone checking to see if she took her medications, had something to eat, etc., IMO, no. She forgets. However, maybe if the daughters keep track of what she does, even if only by phone, she may be able to stay home by herself. That remains to be seen.

As far as my relationship with the daughters, it is not hostile, not warm and friendly, but, we can communicate. One of them I have not seen for years, the other one I see about once or twice a month. Whether she wants to hear it or not, I talk to her about her mother. Finally, this year she has come around once or twice a month and takes her out to lunch.

My chance of going thru withdrawal or my getting depressed, is not likely. I give myself 3 days to get over things. By the third day I am fine.
Now, it appears the older I get the possibility of experiencing anxiety increases.

Have made up my mind that I will prepare a short notification addressed to the daughters, and with a date when I will cease to be her caregiver.
Whatever happens after that, I'll take each issue one at a time.

"...envisioning your situation now as similar to being caught in a violent storm on the ocean, being tossed about, challenged, fearful, but displaying a strength that will help you survive this crisis and emerge stronger for it."
GardenArtist, that is normally what has happened with any very difficult issue that I have faced in the past. Hopefully, it will happen in this situation also.

What I ponder is the question of when and what to tell my friend. To hit her with this cold turkey without discussing the issue, is not my normal style. I cannot positively process the thought of doing that to her.

Biglith, if you really feel the way you've described, it might be wise to pre-empt any further intensification of your negative feelings and find a placement for your mother. Perhaps the "free at last" sentiment was written in the heat of emotion, but if that's how you feel most of the time, that will eventually (if it hasn't already) reflect itself in your attitude and possibly treatment of your mother.

She deserves better and you deserve not to be burdened by such negative thoughts. Think it over... maybe the time for a change is now, not after your mother dies.

Lies, your statement is so true and reflective of friendships and how they evolve:

"Not wanting to live at my friends home does not necessarily mean that she is going to get wiped out of my life. We have been friends for some 30+ years. Gone through all sorts of ordeals, and came through it all. "

And this friendship will change as well, over time, and with your efforts. As I've been reading this thread, I've thought of the movie Julia with Jane Fonda, Vanessa Redgrave and Jason Robards, based in part of the life of playwright Lillian Hellman.

Apparently it's not clear if the Julia character was real, but the masterful depiction of their relationship and the reversal of the strong, resourceful woman is an insightful character study.

Your relationship with your friend has changed and probably will continue to do so because of her condition. Yours is beginning to change, in ways that are probably frightening but also traceable to stress. I think for you this is an early warning sign, which you're heeding wisely.

I can't help envisioning your situation now as similar to being caught in a violent storm on the ocean, being tossed about, challenged, fearful, but displaying a strength that will help you survive this crisis and emerge stronger for it. I suspect when that happens, you'll still need to be a safe haven for your friend, but the very difficult caring will likely be provided by those who are paid to do this for a living.

Liesl--
You have GOT to take care of yourself! Anxiety with chest pains and nausea--and your friend's daughters are nowhere to be found? Do you have any more support in this? When you went to the heart center--or anywhere else, for that matter, who stays with your friend? If you don't KNOW if she can't be left alone or what her capabilities are...that's scary. You've shouldered the burden for this friend and she now relies on you (and her kids let you). I think the sooner you step away from this situation and become independent of this the better off you'll be--or will you go through withdrawal and more anxiety worrying about your friend? It really is up to you what and how soon to do this. One of these times you will wind up hospitalized..and what would happen then? These daughters need a HUGE wake up call. Can you talk to them at all, or is it so hostile you don't feel you can? Maybe your friend's dr can make the call to the daughters and explain the situation. I think I'd die from shame if that happened to me--geriatric drs will and can make life changing decisions for their patients..just a thought. My mother's just nixed an elective surgery mother wanted to have. Thank heaven for him! She wouldn't listen to us kids, but when the DOCTOR said it...I'm really more worried for you now than for your friend. Please try to gather the courage to walk out of this (while remaining a loving caring friendship with your friend.) My heart goes out to you today...

I am a sixty seven year old male who is a full time caretaker for my mother who is an invalid and showing signs of dementia. It is so depressing that I am spending the so called golden years this way. I swear the best day of my life will be driving out of the cemetery and singing, "Free at last good God Almighty I am free at last"

My only comment would be concerning the money that she does or does not have to pay for Assisted Living or NH care. Your friend worked and earned her money. She should be using it for her care now. No matter how we believe about our afterlife, We do not take any of this worlds' goods with us!!! If the daughters were concerned about an inheritance, they would have, or they will, make sure they step up and take care of Mom themselves. Get out and let others sort it out. Moving back to your own home that is now remodeled and waiting for you should be an adventure. God Bless You for your compassion!

MidKid58, ferris1, NJCinderella, freqflyer, GardenArtist, SamIamW,
I am certainly appreciative of the openness and sincerity of all your expressions, as well as your straightforward replies.

Yes, I am concerned, petrified, apprehensive, confused, and many other adjectives that I can think of. Scared 'itless is also applicable.

This issue is probably THE most difficult that I remember experiencing. It's possible repercussions are taking their toll mentally and physically.
Yesterday I ended up at the heart center with chest pains that would not quit, and feeling nauseous. All anxiety related. No surprise. Some tests in the next few days. This morning, the same thing. Normally, I manage stress and conflict fairly well, and think positive most of the time, but, this experience is getting me off kilter.

Not wanting to live at my friends home does not necessarily mean that she is going to get wiped out of my life. We have been friends for some 30+ years. Gone through all sorts of ordeals, and came through it all. I intend to remain her friend. However, do not wish to be in charge of her. It is time for her daughters to step up to the plate.

As to the three questions, MidKid, my answer to all is (?) it remains to be seen as to whether she can or cannot. Since the very onset of her disease, I have been with her, and taking care of matters as her inability to do certain things progresses.

BTW, I'm in the US.

Liesl - You sound confused on this issue. When you first came to this discussion, you were asking on ways to resect yourself from this situation - now you are back-peddling.

You first need to make a finite decision regarding your stance before moving forward.

There's also the fact that the friend is reliant on the OP. I'm not sure if that would be considered in APS involvement, but it does make sense to me. The friend expects and has relied on the care for 10 years. There might be a "reasonable expectation" that it would continue unless the OP advises and takes action otherwise.

Good question though - and it does make good common sense that the siblings should be the ones held accountable, not the friend.

NJCinderella, the friend could be legally responsible because she had in good faith accepted to be a caregiver for her friend. If it was just for a couple of weeks, there wouldn't be an issue, but ten years had set the tone of responsibility. With notice to the daughters that she can no longer keep up with the caregiving demands, it is time for other measures.