Tuesday, June 02, 2009

Silence Of The Posts

[UPDATE: After I read this post, I realized that I hadn't described my medical incident from April on this blog. It will add some important additional background. Click on the new links in the italicized text below for more info.

I've tried to keep this blog upbeat and funny. You can read about how hard and terrible it is to be a caregiver in just about any place that discusses the topic. I've stayed away from writing about the adverse effects this has had on me in order to stay "on message" and not be a Debbie Downer. I think it is important to share that I've had all the negative crap that goes along with this situation (depression, anxiety, burn-out, etc.) even though I've tried to write only about the funny/bright side in order to stay sane!]

I've been quiet here on the blog as I've been in a very depressed mode. I had switched my meds in January which only seemed to make things worse. I switched again and at least I'm back to the place where I was before the change.

I'm sleeping waaaay too much but yet always feel tired. I have a constant knot in my stomach and don't feel like eating until dinner time. I manage to drink an Ensure every morning to keep up my nutritional intake. I was down 8 lbs. at my doctor's appointment yesterday. (I shouldn't complain!)

The bottom line is that I'm burned out. I have no motivation to take care of myself let alone my mother.

I've had to do some serious consideration about where I'm at, where my mom is at, and the situation at hand.

My brother and I have decided to place Mother Dear in an assisted living center. This is probably going to happen within a couple of weeks. The place we selected called today to say that her private room will be available next week. A tuberculosis test was required and that is done. Next is an appointment with her physician to fill out all the paperwork.

I don't know what to expect. I think I will feel a lot of relief and a lot of sadness, too. I've been at this for four years so I will be starting life over and I have quite a bit of fear around that as well. Some have said I will be lonely but I don't think so since I have lived for years on my own and rather enjoy not having to accommodate (tolerate?) anyone else.

The bottom line is that Mom could be here for years to come. Am I willing to live like this? For how long? I've been waiting for a sign. I think my error was looking for a sign within my Mom. However, after I thought I was having an aneurysm in April it occurred to me that the sign was going to happen to me. I have to save myself. [Update: See what happened here and about the MRI here. The subsequent MRA also came back negative.]

Mom is now at the point where she doesn't know where she is most of the time. I'm not sure that being in a strange place will feel all that different to her. At least at this place, there will be plenty for her to do and people to interact with.


Mom said...

I have been faithfully reading this blog for several years. I have been amazed at your courage, strength and love. If one day I am afflicted as you mom has been I hope that there will be someone to show the amazing love you have shown. You are a good son. It is time to rebuild your life. Blessing upon blessings on you and your mom.

elanor said...

Just wanted to say I'm thinking of you at the moment, it's hard, it's such a mixture of feelings when the time for placement comes, and the exhaustion takes quiete a while to recover from,
take care, you are a wonderful son to your mother. and please keep us up to date about how you are both doing

Greg said...

I know this has been difficult for you, but you're right to do it before you are entirely broken yourself, and it sounds like you've taken care of your Mom for as long as she could appreciate it. Inevitably, had she stayed with you, you'd have eventually found it too much to care for her 24 hours a day and you would have witnessed some very very distressing scenes.

I think you will be at a loss for a while to fill the enormous gap in your life at home with your Mom gone, having made her your first consideration before every step for so long. Mundane chores will give you pause because suddenly you don't have to think around her needs. You may feel a lot of guilt, even though you know you did the right thing and have done more than most would do for as long as you could. I don't think you'll be lonely, but I think you'll spend a lot of time visiting your Mom in her new home and feeling bad because things aren't ideal.

However, she may surprise you by not noticing the things you can see that aren't right, by embracing her new surroundings and appreciating the extra attention that is now available 24/7.

As usual, you are showing great wisdom about this step and I see that you recognise the inertia in yourself, the fear of the unknown, at the removal of this compelling reason why you cannot get on with your own life. I have so much confidence in you that you will overcome all this and learn to let go a little, and I look forward to reading how you do so.

You've done a smashing job, both for your Mother and in the generous way you've shared your journey with us. It's not over and I hope you will have a lot to say about this transition and its effect on you both.

I hope you can get better. I've been plagued by long spells of depression for years, myself, and would hate to see anyone else go down that drain. You've had to be so strong for such a long time. Be kind to yourself.

Greg x

Gavin said...

Mom, Elanor and Greg--As always, thank you for your kind words. Your support and camaraderie has helped me to keep this all in perspective.

I've added an update to the post since you read it. I included some links where I wrote about what happened to me in April. I mentioned "aneurysm" in this post but forgot to give details. An episode where you think you may die sure does give one wider perspective!

After my doctor's appointment yesterday, we doubled my dose of Pristiq (anti-depression, anti-anxiety med) and I didn't have a stomach and crushing feeling of impending doom for the first day in months. Yay!

You can tell I feel better since I wrote two posts today and a long comment! I still owe a post on the various facilities I interviewed...that's been what, a year? In the end, we didn't select any of the ones I would have considered 5 star a year ago. Instead, we chose a place closer to home to facilitate more frequent visits, that has an involved caring staff, and has been recommended by word-of-mouth from many friends.

I'll try to write more as my mood permits. I think I have a nearly complete post in my drafts.

citygirl said...

I'm very relieved and happy to read this post. I noticed you were not posting and wondered if you were okay. You are making the right decision for your mom's care. I know placing my mom almost killed me too. I cried every night for the first week or so out of guilt, fear and the realization that my mom had reached this point. I worried myself sick that she wouldn't adjust or settle into her new home. I worried that she would get picked on by more aggressive residents or that she'd feel abandoned, lost, sad, more confused than normal, angry and scared. But things worked out as she settled in eventually and I felt better as I knew this was better care than I could give. I've struggled with depression on + off for years and I know how debilitating it can be. I'm glad to read that your medical tests came back clear but it doesn't really explain what caused your symptoms. I hope it was a side effect or stress?

I really enjoy your blog and hope to read more in the coming weeks and months. You are an excellent son and your mom is very fortunate that you have been able to care for her for so long at home.

A Single Man said...

Oh, honey, of course you're burned out. Who wouldn't be?

I'm so sorry that your caregiving for mom has cost you so much. And of course you have mixed feelings about placing her. When I've been close on a few occasions to placing my partner, I've felt both excitement at losing the burden and sad because it means the beginning of the end for him (and guilt that "I'm giving up on him" and that somehow I don't love him anymore).

About 70% of placements occur because of caregiver burnout, so please don't feel like you're the only one that experiences this. It's grueling, heartbreaking work and it takes its toll.

Yes, you do have to save yourself. As much as mom wouldn't want you to suffer, you are and understandably so. And no one can be a caregiver under your circumstances indefinitely IMHO.

I'd wondered too about your lack of posting and I was worried for you. I'm glad that the meds are working for you.

Please know that you're doing the right thing in placing mom (based on what I've read here and my own experiences). As much as we all want to be super human and toil on, the cost of caregiving is very, very high.

ArichNY said...

Gavin....I have admired you since I first met you. Many people could not have done what you have done these past four years. You are in my thoughts and prayers always. As you said to me, I am here for you too! Hugs to you Buddy!