Having a Baby? Sarai revisited :0)

An email to my brother, Greg:
Thanks for checking in with me...life has been pretty tough these days and I'm realizing how much I need to have regular breaks. Thankfully, Bekah is home for the next four months and she'll be a great help to me in so many ways. I don't have her clean up Mom's messes or handle the bathroom at all but it's really good to be able to walk the dogs, go for a bike ride or run to the grocery store. I've gotten pretty depressed the past month or so with Mom's decline and my isolation so I really need to build myself up and not get to this place again. The respite care has been harder to arrange than I thought but I now have a really nice woman from Nepal who comes for 6 hours on Thursdays. She's been for the last 3 weeks and that has been a huge relief. She seems to handle Mom really well - even her psychotic episodes.

 Mom is less and less connected with reality. I took Dad to church this morning and afterwards we went in to check on Mom (she was still in bed.) She told me she was really exhausted from taking a shower (yeah, right) and then she asked Dad if he was overwhelmed with the thought of a new baby at their age. She often has a baby in bed with her....ah well. Dad handles it really well but it's taking it's toll on him too. At least we haven't had the really crazy episodes where she tries to rip her clothes or grinds her teeth or even tries to bite me! Sad to see her so not like herself...I don't want to be like this for my kids. When I'm well rested and taking care of myself, it's all good but I've let myself get run down. I have plans to pull myself together this summer. Gotta plan a vacation sometime soon!

Bekah comes home!

Bekah is on her way home from college and will be here for the next 4 months!  I can't begin to say how much I look forward to her being here and to having another caregiver in the home.  My plan is to work out a schedule so that I can get back into regular exercise and outings away from the home.  I still feel really fragile and need to be proactive in my own care.  I have also been thinking this would be a good time to get Dad out more and I will try to do that.  At the same time, I realize I may be projecting my needs onto him.  I asked him this morning what he'd like to do and he said "just exist."  He's said that to me before and I thought he was depressed but today he said he's content to just be here with Mom.  And read his books.  She's content to spend most of her day either in bed or napping in her chair.  And I'll be much more content when I have some structure in my life.

Expectations are...

resentments waiting to happen.  With that little piece of wisdom in mind I try not to have expectations that involve Mom doing something she doesn't want to!  So Easter and yesterday, I asked Mark to come and stay with her so Dad and I could make it to church.  That worked beautifully and we had two wonderful worship services together.  Then in the evening, Mark stayed with both of them while Hallack and I went to a gathering of the new church plant we're a part of.  What a gift he is to me in this "parenting our parents" adventure.

While at the gathering, I had a nice chat with a couple who had spent their weekend having a garage sale.  They said that they did really well and were busy the whole time (which has not been my experience with garage sales!)  As they reflected on why, they noted that "people are really hurting," and that this was a way for them to socialize, shop, share their stories and pick up a trinket or two.  This morning I was reading in the paper about a woman who's putting together a big garden in her yard so that she can give back to the community.  She was helped by Home Depot and some Catholic youth in the process and said that it "countered the stinginess of the era." 

Both of these stories reminded me of what I think is the golden opportunity for followers of Christ during this age of need.  I believe that the cutbacks in government aid give us another chance to do what Jesus commanded us to do:  "to love others as ourselves."  The problem is that many established churches are so busy running the club, maintaining the facilities and paying the salaries of the professionals that there is little left to give to hurting people.  In fact, churches themselves are feeling the pinch as people feel that they have less to give and so the push is on to get "more givers in the pews."   As someone who's been one of those professionals and married to another, I realize that this can be a frightening time.  At the same time, I can't help but get excited at the possibility of shedding the old way of doing things and embracing something new.  What if we focused on the needs around us and trusted that God will take care of our needs?  This might mean Pastors who are tentmakers and either sharing our facilities with others or abandoning them altogether.  I prefer making proactive choices now rather than waiting until congregation after congregation dies a slow death.  Do we have the faith to do so or will we continue to put more and more effort into propping up church as we've always known it?  I no longer have the energy or desire to keep the club going.  I do have a lot of passion for seeing God's people meet the needs of their hungry neighbors in all ways:  physically, emotionally and spiritually.  Not so that they'll join my club but just because that's what Jesus asks us to do.  Exciting times are ahead and I, for one, refuse to give in to fear but choose to have hope in what God is doing in our midst.  Fear Not!

The Third Step in Medications

Several months ago, Mom's neurologist and I talked about three steps in medication to address her mental challenges.  The first step was to increase Aricept which is a drug used for Alzheimer's patients and that worked for a while.  She really did connect with reality on more of a regular basis.  The next step was to change her anti-depressant and that had relatively little impact so last week we enacted phase three - seroquel.  This is an anti-psychotic drug that can have powerful side effects which is why the pharmacist called it the "last ditch drug."  We're to that stage although she's on a very low dose.  On Monday we have an appointment to meet with Dr. Kirschner and I hope to have a better understanding of what I can expect with this drug (along with how to use it.)

This is so necessary as I've watched Mom deteriorate and lose touch with reality.  She often starts with a saying such as "I know that you know that I know that God knows that I know..." and I think, "uh oh, here we go again."  From there she may try to tear her clothes, break her glasses, spit out her food or throw whatever is in her hands.  She's even tried to bite me and the behaviors remind me so much of the times that I worked with the severely developmentally disabled at Fircrest.  I've been so glad that I had that experience since it's helped me to deal with Mom.This is all very confusing for Dad and he usually tells her that he loves her and will sit and hold her hand.  One time he was kissing her and she started clearing her throat and spit at him.  Watching her mind unravel is hard on him so I'm grateful that he seems to be able to disappear into a book and shut out reality for awhile.

Gail came last weekend and it was such a gift to me to be able to take off for one night (I went to Renton to hang out with my friends Juli and Ed).  I went to church with Juli in the morning and then came home and took Ben to North Creek.  That night we had our new church development team at our house so I had a full day of worshipping and reflecting on God's goodness.  In order to give us quiet with our group, Gail took Mom and Dad to Marysville where she met up with Adie.  Right before it was time to leave, Mom started with "I know that..." so we gave her some seroquel and got her settled in the car.  Gail asked us to pray for her and you better believe that we did!  I don't think I would've attempted to take her like that but Gail is amazing in that way.  She handles Mom so well and I never have a moment's concern when she's caring for them.  They ended up having a very nice dinner and were glad that they'd gone.

This week has been fairly stable but we've stayed really close to home.  I did take my day off and trusted that their caregiver (Sita) from Visiting Angels would be able to handle them.  She did and it was such a relief to come home and have everything calm.  I started with Visiting Angels the week before and came home to Mom having an episode.  I wasn't completely confident when I left this week but I decided I had to go.  I've been fighting depression and when I visited the dentist this week discovered my gums were bleeding - a sign of stress and a compromised immune system.  That was a big wake up call so I'm determined to take better care of myself.  It will do no one any good if I get cancer or have a nervous breakdown!  I'm also trying to figure out how to get a vacation in - we'll probably have to string together a variety of caregivers so that we can be gone for at least a week.  It has now been more than 7 months and the most I've been able to get away has been two nights.  This is where I start to get panicky and wonder how much longer I can do this?  Then I remember that this is a calling and I lean into God.  He always provides just what I need at the right moment (like Gail last weekend.)  With the longer days, Bekah coming home for the summer and the possibility of a week vacation, I think I'm going to be fine.  Now we'll just see what Dr. Kirschner has to say.     

A Better Way of Dying...

....is the title of the latest book that jumped out at me while taking Dad to the library. I'm reading it and thinking, "man, I wish we'd had this ten years ago." A recent book, it talks about how to have more say over the kind of care you receive as you age. What the medical establishment is set up to do is curative care...almost always, even with someone at the end of a long battle with a nasty disease like cancer. The two women who published this book in 2010 are sisters; one a lawyer and the other an ER doctor. They talk about how there are "exit events" in our lives that used to take us but no longer do because of all our medical advances. While this is really good news for those of us who are healthy and enjoying life; for the terminally ill they can drag out our lives much longer than we want them to. For instance, pneumonia used to be called "'the old man's friend' because it offered the very elderly a relatively quick and painless death."(pg 53) The same is true with urinary tract infections, but today we send the elderly to the ER for treatment (sound familiar?) What I've discovered is that doctors do this because that's how they get funding for the hospital. That is a whole 'nother topic...

Okay, so what does all this have to do with our situation? Besides being enlightening and a help for me in my preparations for death...very little. While mom will say that she wants to die (usually to get out of doing something she doesn't want to) she really doesn't. She isn't ready to and my job is to help her have the most quality of life possible and help her to be ready for death. She has quite a bit of fear and I think she needs a pastoral presence in her life which cannot be me. I am already wearing several hats that make this caregiving challenging. I think what she'd like is to spend as much time in bed as is possible and slowly drift away. Dad, on the other hand, does not want to spend so much time in bed and is fighting aging with all his strength. He needs to get out and experience life and feel strong even though he is slipping as well. They have different needs. and I'm struggling to find a balance that works for both of them. The adult day care is not working since Dad doesn't want to go without Mom and she refuses to get up to go. Two weeks ago I tried all my tricks and was trying to pull her to a sitting position when she started hollering "ow, ow, ow." That felt like elder abuse so I let her lay back down and she spent most of the day in bed. I can't make her get up and now I know how the caregivers at Aegis felt. I used to be able to persuasively talk her into getting up but now she just says "no." Her words to me this week were "no, I'm only going to do what pleases me." Alrighty then....

She's also increasingly disconnected from reality. Yesterday I heard her talking in the bedroom -"are you getting a book for Grandma?" is what I heard. When I asked her about it she said that Bekah was beside her bed and she kept asking me what she was doing. Sometimes I play along with her; sometimes I ask her questions and sometimes I try to reconnect her with reality. In this case, I tried all three and was still unable to get her mind off "that poor little thing under my bed." I finally got her to the bathroom and assured her I would look after Bekah.

Yesterday was also a new adventure in caring for Dad. While he likes to do pretty much everything for himself, he's having a harder time doing that. The adventure yesterday revolved around him being constipated and I will spare you from the details. Suffice it to say that I went a long way into the reality of "how much worse this could get." A fear that I've had to say "no" to since they moved in and I discovered that God gives me the strength and grace I need in very challenging situations. He has also given me a sister-in-law (nurse Heidi) who gets this in every conceivable way and who walked me through the necessary steps. What a gift. I choose to trust that He knows what I can handle and will provide in each moment. Just as He always has.