Can someone please talk to me?

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Hi I come by here often to read alot of the posts here. They are very interesting and I find myself going through alot of these issues. I am 50 years old and I have a domestic partner who is 68 years and has severe alzheimer's disease. Her onset came from her having congestive heart failure and her being extremely stubborn, I could not convince her to go to the hospital when the ambulance arrived. She fought like crazy till she ended up passing out and not being able to breathe. At this point EMS HAD to take her because as I said she had passed out. We are a gay couple of 22 years. It got to the point that by the time we arrived at the hospital she had already lost alot of oxygen to her brain and has been declining ever since. She was intubated in the hospital because she could not breathe on her own. I was devastated to see her with all these machines and tubes in her. I am by her side NO MATTER WHAT. We are legal domestic partners in NY since 2002. She is now in a nursing home because she had become so violent in the home and I was the only one taking care of her. She does have family but they do not visit her but once or twice within the year she has been there. I am there everyday and feel guilty when I want to take a day off. I am not in good health myself. I have lymphedema and rhumatoid arthritis in both legs. I am in constant pain and am now working with pain management doctors to help me het on a regimen that will keep me comfortable. I LOVE her very much and will do anything in my power to make sure she is comfortable and not wanting for anything. I would love to talk to someone who can relate to my problems. She would NEVER want to live this way and I know this in my heart. I just dont know what to do. I cry everyday after visiting her because she is now confined to a wheelchair, wears diapers, can't speak well at all, blind in one eye, can't open her fingers up due to arthritis, can't walk and the list goes on. I'm gonna stop writing now because I am getting very emotional, sorry, will continue another time.

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jeanneqibbs What a wonderful doctor and such a lovely thing to write to you so comforting i dont know many doctors who would do this, so nice to know that.
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Glendora, it sounds like you are having fun at the NH. I am glad that you have made friends there. Older people can be cool to be around. Now that I'm getting older, I appreciate that more.

I understand what you mean about Vivian knocking food away. I have seen this in some of the videos, though I've not been through it myself. I know that it is not personal, but just a response of a mind that can't figure out why something is being poked at them. I like that you found the words "Taste this" that lets Vivian know why you are poking food her way.

I do love the way you have turned the NH into an enjoyable place for yourself. We see it as such a dread place usually. You have lightened the lives of many around Vivian. We need a million more people like you, for sure. I don't know how much me-time you need now, because you seem to have turned the NH into your me-time. That was a good idea. Friends don't always have to live next door. Sometimes they live in NHs.

I have a feeling you are doing just what you need to be doing. I hope your own pain and swelling are manageable. If they get too bad, I think I can speak for all the old folks at the NH who would say, "Stay home and take care of yourself today. We'll see you tomorrow."
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I agree with everyone you are an angel and as SA says which is what I do, think about your partner and how she would want you to be happy and not live like this with no time for yourself also how would you want her live if roles were reversed?
I know when the time comes to leave my mum in a NH that my old mum would never want me to give up my life to look after her all the time nobody can do this without a break its just not possible and not healthy.
You should give yourself a big pat on the back for doing right by her and caring for others aswell!
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Dear Glendora, All I can say is ditto on everything all the the other caregivers have already stated. Your Vivian is so blessed to have you in her life, and I pray you will be equally blessed for your efforts and good deeds. It is very gratifying to all of us when a poster follows up as you have done and gives us an update of their situation or a final outcome. As to your question about phone calls, for which I have noticed no answer so far, I would just like to say that to my knowledge nobody exchanges phone calls. I have not checked my own profile in awhile, but I believe there are details that you can choose to make public or private. I do not recall if the profile allows telephone #s. Basically, the purpose of this forum is to share our common trials and tribulations freely online, with the assurance of identity protection. Even without knowing somebody's real name or phone #, I think there is a general feeling of camaraderie and affection that seems to develop amongst us all. I hope this helps!
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Glendora37, I'll echo what the others have said. What you are doing is awesome. Don't be afraid to take some time for yourself, too.

As to what it means the Vivian is fighting with you now, you will have to trust that it is not the real Vivian doing these things, but the part of her the disease has overtaken. If she were herself and could communicate clearly, she would tell you what she wanted and not fight with you.

My husband's kind doctor recently sent me the results of his autopsy/brain study. I think what the doctor said about my husband Coy applies to your situation too:
"I know your challenges with Coy were enormous, but as we are aware, these challenges reflected the neurologic disease and not Coy the person. Please take comfort in knowing that you did all that you possibly could have done in fighting this illness."

I wish you comfort and peace.
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Hello everyone who responded and newcomers. First off I would love to THANK YOU all for reading and responding to my story. You all have given me great advice and I will try my best to follow it. I LOVE this woman so much. We just had our 23rd anniversary on September 19th and since she has been in the NH, I still celebrate it by having a party or just continuing to bring her flowers as I have always done on our anniversary in the past. I miss her dearly and love when I make her laugh which is my goal when I go there to visit her. Alot of the staff there always tell me how they admire mine and Vivian's relationship. Ok, let me answer some of your questions.

@pstiegman, yes I have handled all the legal stuff pertaining to her health and yes, I am POA & Health Care Proxy. We did all this when she was still able to make decisions and had just started to get sick and I am so glad we did this.

@blannie, thanks for all your advice. Yes, I am POA and Health Care Proxy. I will definitely TRY and take time for myself, I promise. HUGS to you too, my dear.

@StandingAlone, thanks so much for your advice also. I will TRY and take more time for myself. I do take off on Wednesday and Sunday to relax or go to church on Sunday or both but the other days I am there from 11 am to 4 pm. I try to be there to feed Vivian lunch and dinner before I go home. I know in my heart that Vivian would not want me in a bad state of mind but I also know for a fact that Vivian would never want to be alone so that's where I'm torn at. I feed her and when she goes to sleep that's when I leave for the day. Thanks again for all your feed back.

@macada, thanks for the compliment. I do what my heart leads me to do and I really do feel that helping people is my purpose here on earth. I really feel this way, thanks again.

@beckncall53, thanks for the compliments. I just do what I feel is right for the residents and Vivian and what will make them happy. I promise you I will TRY my hardest to take care and take more time for ME. Thanks so much for all your kind words. All of the responses that I have gotten today makes me feel so good inside and lets me know that I am truly doing the right things and I THANK YOU ALL!! God Bless You also.

@LadeeC, o.k. you all are making me blush like crazy by calling me Mother Glendora...lol...although this name sounds great I just do what my heart tells me. I will definitely talk to Vivian as she is sleeping and ask her questions and hopefully I will get some answers.
All the things I do for the NH is for one to keep me busy because I feel alone at times, most of the time and it is something that makes them happy and me seeing them happy. I already have accepted the fact that I may never get my Vivian back and at times find it hard to deal with but yes, I have accepted it. I could NEVER replace what I had with Vivian, It was and still is a very UNIQUE relationship. The time I spend there is what I want to do for myself because as I said earlier it makes me very HAPPY to see the residents and Vivian smile.I do alot of playing around with them. There are residents that have been there for many years and won't eat but just drink nutritional supplements and sometimes just eat very small portions of their food but as soon as I bring in a meal those same residents that won't eat actually eat and request my food. That is amazing to me and the supervisors. I do want to go different places even out of state but I feel guilty even for thinking about it. Here is an example: I went away to Atlantic City for a couple of days and when I returned Vivian was so MAD at me. She would not talk to me nor let me feed her and told me to GET OUT OF HER HOUSE. I felt so hurt so now when I do go back there I tell the CNA's to please let me talk to her so she can hear my voice and maybe won't be so angry when I return. I do try and go to AC once a month but I always struggle on the first day gone. After the first day, I'm ok and I go ahead and have some fun for the next day then come back on the third day. I am NEVER gone more than 3 days. I have had invites to go away but don't go if it is too far away just in case something were to happen, God forbid. Again, I thank you all for all your advice. You have all made my day, THANK YOU!!

One question, does anyone call each other? I would love to talk to any one of you via phone if that is at all possible. Have a blessed night all.....((((HUGS))))
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I'm just going to add my voice to the others .. can't think of a thing to add. Mother Glendora is right and I hope you heard SA about what she'd have wanted for you, in her right mind. What's left is NOT her, I'm sure you know that. And taking the time for yourself is a critical part of being able to be there for her, otherwise.

Ok, well .. maybe I do have something to add, now that I think about it. Your original question asked, "what can I do?" Since she doesn't seem to verbalize well, at a conscious level, I'd be inclined to ask her sub-conscious, while she's asleep, "What do you want, Love? How can I help? Can you find a way to tell me?" Her heart and soul is in there, somewhere, even if it can't easily reach the surface. I'm a firm believer that we all choose when we die, one way or the other. If she'd truly hate this kind of survival, I'd find a way to let her know it's ok .. that you'll carry on without her. I'm not suggesting that you try to convince her, but rather to let her know that any decision she makes is fine with you.

Ok. One more thing. All those things you do for the other residents .. is it your way of keeping busy? Of trying not to think of what you've lost? Of replacing the life you once had with her? While what you're doing is laudable, even saintly .. would the time you spend doing so be better spent on YOU? Getting a massage, going to the local LGBT center and getting involved (my fave thing to do when I'm single and feeling left out of the world), taking in a movie with a friend?

Blessings on you and yours,
LadeeC
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Glendora......you are an absolutely beautiful n remarkable woman......inside n out....I cannot say enough.....it has all been said by others.....especially by my dear friend...StandingAlone........She said everything that I wanted to say.....She's is right on about you...

Your sacrifice for others is to be admired ......Your commitment to your partner, Vivian, comes from your love for her, your loyalty ,your commitment ....n it is beautiful n very much admired....You are an example of true selflessness....n when the day comes that your beautiful Vivian meets her maker....you will have no regrets......You have done everything for her , n others....without hesitation ...
Very few people could do what you are doing for those in that NH.....I'm honored to have read your post....What more can I say.....You are a very special woman....Please.....take care of YOU.....You deserve so much.....n if Vivian could express it to you , she would tell you the same thing.....

God Bless you, shine His face upon you....n give you peace.....Much respect...Beck
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Instead of Mother Teresa we now have a Mother Glendora. YOU are amazing!
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Glendora, you're awesome, pure and simple. Your girl is lucky as hell to have you around.

You're doing every single thing possible for you to do, and then some. There is absolutely nothing wrong with wanting some time off, to reflect, to think and breath...and yes, to get away from an extremely painful situation... You're human. Nobody around here is super human. And we get it.

If your partner were well, would she want you in a bad state of mind, literally killing yourself doing for her and finding no rest or peace in your own life? Would a loving partner want that for you? Or would she tell you herself to go...just GO...and LIVE already...

There's no room for guilt here. None of us should feel guilty for requiring time to recharge our batteries. It's not a failure. It's not a wrong. It's not a weakness. It's a human need for self preservation. Time away makes us more able to cope, to be better care takers, not less. In your situation, I wouldn't be there every day. I would make a point of taking a day or two for myself. It would be necessary for my well being all around, and I would hope that any loving partner would want me to have that.

People all around you are lucky to have such an angel. Take comfort in that truth.
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