I'm at the end of my rope with Alzheimer's.

Last week MIL caught a cold, which has, of course, settled into her chest. She does not understand to spit out the phlegm. She does not know how to blow her nose. We sat in her room for hours on Saturday while she slept. Occasionally she'd just say "something" (nonsense, jibberish) and my husband and SIL would leap to attention, "What? What did she say? What does she want?.... Mom? What did you say mom? What do you need Mom?" And the thing is, I really don't believe she was saying anything TO anyone in the room. She's completely lost inside her own head. Then the room was, of course, overheated and I'm prone to hot flashes, so I just had to get out of there and stand outside in the rain to cool off. I think my blood pressure was off the charts. How the hell much longer is this supposed to go on? How many "this is it" moments are my husband and SIL supposed to suffer through? Sure, SIL aggravates the snot out of me often, but this IS her mother and her heart is breaking. My husband, of course, internalizes everything and just becomes quietly angry. ENOUGH! I just want God to take her. Now. Husband and SIL are mourning their "living" mother. It's too draining and too sad to deal with any longer. If I'm selfish, that's fine, but I'm so weary of always being on red alert. One thing, thank God my husband came home from his Sunday morning visit and said that the sister and he agreed that this illness will NOT lead to hospitalization. It will be dealt with in place, with hospice and the assisted living staff.

My dad had a bad cold recently and I was afraid that it would settle in his chest. He got over it pretty well, though. The same questions were going through my mind, though, what to do if it did get worse, as in your MIL's case.

I pray for the peace of your family during this time. It isn't easy to face end of life decisions and face what other relatives think about the decisions made. In the end, it just winds up being a judgement call on what your LO would want if she could make her own choices and what she has voiced regarding end of life decisions in the past, when she was capable of voicing her opinions. It's hard, I know. I had to make those same sorts of decisions about my mother, and allowed her to pass peacefully last February.

Try going for a walk, Nina, in search of momentary peace. Shut out everything else. A few moments of peace can last for a long time. --Jim

Times like these can also be a good time to make positive memories with your family. It sounds hard, but you can find goodness in this.

Nina,

Mourning the living is what truly makes this disease so horrible - IMO. It sounds like you are doing a fine job supporting your husband and SIL through this current challenge. Don't hesitate to take some time for yourself. Gather your strength and peace and then fight the fight again. It's not easy but in the end we all seem to find strength we never knew we had to fight each of these battles.

Peace and strength to you,

Bz

This IS the place to vent! And this is why Alz is called "the funeral that never ends"!

Good for you to leave the room when you need to, and for supporting your husband and his sister!

{{{{HUGS}}}} for you & yours!

Take go*d care, Shaye

Shaye, I've never heard it called "the funeral that never ends", but I sure do know why it is called that. UGH!!! The suffering of everyone involved.

Nina, you sound like a wonderful wife, SIL and DIL. Sometimes people like you are the forgotten ones. It's nice to hear the voice of the in law, the friend, etc... and know that without the support of you, it would be so much harder for the rest of us. You also make us realize that you are suffering right along with us. I hope this paragraph came out right, how this is a "thank you" to you.

My neighbors, the most wonderful neighbors in the world I might add, the ones that loan me their car to go see my mother - she's an only child and he comes from a family of 14 children. Her mother had dementia. He was there for her all the time and the most supportive husband EVER! He went to visit his MIL almost daily. When she died, he was so inconsolable, and she handled it much better. She needed to help him through it.

Thanks everyone for your very kind words. But I'm feeling kind of guilty because I'm really so fed up with the past four years being about MIL & Alzheimer's. I'm looking ahead to the holidays and thinking that my own parents are elderly and I don't know how many more holiday seasons I'm going to have them both with us. I really, really, really want to go away for Thanksgiving, bringing MY parents and sons with us. Just 2 nights... but... here comes the guilt -- what to do with SIL and MIL? So fine, SIL can come with us... but... then it's OMG no one will be with MIL for the holiday. I really don't mean to be cruel, but MIL does not eat (and isn't a big part of Thanksgiving the DINNER?) and she has no idea about any day being a holiday so she is not going to know that she didn't see her family on Thursday, but instead we can see her on Friday. I just want a happy family day that does not revolve around Alzheimer's and hospice.

Up until this past summer, MIL was aware and understood "it's Christmas" or "it's someone's birthday" -- and she'd enjoy the celebration even if she forgot about it an hour later, it was nice to see her happy and participating in the moment -- but now she no longer has that capacity.

So, after the in-laws accepted the reality of Alzheimer's we readjusted to a "new" way of spending holidays for the past 4 years. But now Alz has progressed beyond and I don't know how to handle holidays.

Oh, Nina,
I hear the sadness in your post. As caregivers we often feel guilty, when our inner voice is saying to do something 'against' our 'duty' mind.

If we do not take care of ourselves (and others in our life) we cannot truly be good caregivers because this way of living distroys our spirits. And think of this has 'taking care' of all the others in your family...6 living people thrumps 1 person, who has lost most everything already. So it's not just you. And you have been very supportive, IF your husband chooses to stay...go without him.

YOU have been there for 4 years, adjusting as the Alz progressed, kuddos to you!

My suggestion go away and enjoy Thanksgiving, giving Thanks (& food)with your family, and SIL if she chooses to join you!

You are right, one day is not going to make a difference for MIL, while it can be making Happy memories for the rest of you, including YOUR parents, you don''t know how long you will have with them either...every day is a blessing to each of us.

Thanksgiving is MY favorite holiday, I adjusted for several years also! My experience with the last holiday season both my parents were alive (2007) were not 'happy' in the least. The facility gave a big Thanksgiving feast for family members and Alz residents at the facility. Grand food, my parents had NO idea of what was going on...besides the meal was not at a regular time for 'eating'. Mom just kept getting up and wandering off. Dad wouldn't eat because he was wondering where she was. Mom even said "What are you doing here?" it was not in a kind way; like I was responsible for dinner being late. My memories are not 'happy' for any of us...Bless my DH!!!! It gets 'worse'. On Thanksgiving Day (a few days later) I invited them to my house for Thanksgiving Dinner....no clue, it was too far out of their routine...in fact, this is the last time I had them at my house...it upset my mother, she thought it was 'her' house and ALL her things, she started picking things up and wanted us to leave....it was very, very, very ugly! It upset all of us terribly! (The next day neither of them had any memory of it..but I carry them with me.)

So please follow your heart...if MIL is 'sleeping' most of the time, she won't know you are not there.

One note: if everyone has been there, when you all leave she might choose to expire...I've heard of stories where everyone sat there for days...and just as they all left, the patient expired, like they were awaiting to be alone. My real father did that he had cancer, we had rotations of people to sit with him. When my mom got up to use the rest room, he went!

So again, my suggestion, from experience...go have a great time with your famliy...you can 'adjust' to anything that happens when you return! It's one day, you will never get again!

Take go*d care, Shaye

Excellent advice Shaye. Mom's not at that point yet, but I will keep that response in my printouts of important information for me to read and take to heart in the days to come. Thanks!!

I agree you should go enjoy the holiday with your parents. I also think it's too much to expect all 3 of you to arrive every time there is a "crisis" as there will be many.

Regarding holidays, most of these places have a celebration a few days or weeks ahead of the event. Be there if you can, but if not, it doesn't realy matter as your LO doesn't know the difference. It's silly to pretend holidays and birthdays mean anything to our LOs. It's also sad to try to get them to enjoy something they no longer understand.

Don't guilt yourself into spending holidays with someone who no longer knows what's going on. I would hate to think of the guilt and regret you might suffer if you do not go see YOUR parents and their health declines to the same point. Go as often as you can while they can enjoy your time and attention.

Everyone has offered you such great advice -- and the rest of us too.

We want those happy memories -- so don't feel guilty about leaving for a few days -- you will be creating happy memories for your parents and your children and you still have those memories of when your MIL was well.

Also, for me, it takes a lot of stress off me when I can take a nice hot bath with a few candles lit and just be alone -- sometimes a glass of wine or a cup of herbal tea and it's also a great time to cry.

Please take care of yourself.

I've been grieving/mourning for over 3 yrs but my mom passed away this past April 2009.

Sigh. I, too, continue to grieve and mourn my mom, and how this evil disease is affecting her. And we may be doing this for many years to come. So sad.