As promised, I have written a blog about my respite experience and what it taught me. For those of you who are in the same place as I am on this Alzheimer journey, I hope you can relate. To those of you who have yet to reach this point, I hope you will heed the lessons I have learned.
Good for you...finding yourself again. When I had my two weeks of respite several months before Jim started his final and major downhill slide that would result in his death I also had some of the same expriences you had. Sleep for the first several days seemed to be all I wanted to do. We know we are tired and need rest, but we fail to realize how much we need the rest. Glad t you had a good time and could visit with family without having to watch Sid or be concerned about anyone except yourself.
I was so relieved to hear of your experience Joan, and truly look forward to your "Placement" blog. As you know, I am on the heels of that too.
Like you, I have a respite coming up...for TEN days. Such mixed emotions and I only hope I can experience some of the realizations you have. Though I am in only for two years, the escalating of this disease is traumatic.
Thank you, Joan for sharing your learnings from respite, and again for being so transparent and open to share with us. I'm no expert at this journey, but I find it so interesting that while our spouses may exhibit different behaviors at different intervals and sequences of events, the emotions and trials experienced by the caregiving spouse seem pretty consistent. So glad that you got some rest and further insight to share with all of us. As for me, I am being much more deliberate about preparing for placement at sometime in the future (if necessary), and also planning a longer respite when I feel it's needed. Until then, getting away for a day or part of a day (other than work) has been freeing for me. Helps to keep my head on straight! It's been a really tough year.
Joan, I am so glad that you were able to enjoy yourself so completely on your break. I was relieved to hear your decision about placement for your DH and I hope all goes well for you.
Joan, good for you. Yes, you are and will continue to be happy, even tho there will be more trauma and tears, but happy you will be but for different things and in different ways. Such mixed emotions when you realize you literally cannot put one foot in front of the other one more day, one more time. Betty
glad to hear you got that much needed relief during respite joan. and that your decision to place Sid is now upfront and a working decision. by the way, you should consider making those decorative holiday cookies for resale joan, they are just absolutely adorable! and i bet you can come up with various different designs for all holidays. these gourmet cookies go for big money! divvi
You described that SO well. I can totally relate. Am thinking of you in the days ahead. I now know I made the right decision to put my DH in a facility - even though it is still hard. Big hugs, Shannon
Joan, while my DH is not ready for placement in many ways, there are so many things he still can do such as dress himself, feed himself, shower alone and even make himself a snack when so disposed to do so, I still have all the driving, all the meds to set up and set out, and the job of cajoling him into the shower etc...you all know the drill. I think in early Jan when I see the neuro, not for hubby but for me, it will be more about contending with my anxiety and finding some ways to deal with it along with the "Come To Jesus Meeting" about the subject of placement. What our neuro said at our last visit was that it is known that after just 3 years of this full time caregiving role we have been forced to play. it is VERY common that WE begin to have health issues of one kind or another...... and I think I am going to be told it is time to seriously consider placement. I have looked at 4 places so far, 3 don't take patients who are on insulin...one is a family style facility.. and it was clean and orderly but I didn't see anything as far as activities going on and I visited each place twice... One charged 500 bucks just to get on the waiting list, then if you have a private room it is 4 K when you say placement ( community fee) and then 4 K when the person actually comes into the facility...and you have to provide the furniture. The other places will allow you to bring your own furniture or it will be provided..either way the price is the same but the insulin injections issue is going to be a problem. So next week I will be seeing some other places. And out here the patient has to have a current Xray and TB test..just some things to be aware of in the search..
OMG, Joan, your blog is most timely for me. I was about to post my own message entitled "Anybody else Feeling Disconnected?" I am not only dealing with SAD and on my way to see my PCP to talk about anti-depressants (an option that I've tried very hard to avoid), I have a HUGE feeling of disconnection with all the people in my life that I love. In fact, I don't feel like I belong anywhere anymore. Even when I do go out with friends, it isn't like it used to be, the fun is gone and I don't feel a part of their lives anymore; I don't remember when I last felt joy. I get teary-eyed just thinking about it. I feel so despondent and alone and emotional and cranky (you get the picture). I guess this is what depressed feels like.
Reading your blog does give me a shred of hope that one day I will be able to be the person I once was. Perhaps whatever anti-depressant my doc prescribes will give me patience to wait for my life to begin again. Thank you, Joan.
HI mothert,, I too am hoping for a "Joan" experience. I fly to Honolulu early tomorrow to take him to the VA respite center, and fly back here to Hawaii Island for 10 days off! wow.
mothert, I hope the docs find the right antidepressant for you without all the back and forth of trials and errors..I am on very very low dose Valium but our neuro does not want to see me on that so in Jan I go to see him w'out DH..he said he can help me with my anxiety issues...so I suppose he will want me to try some other med..my primary is pleased with this move too. I like my Valium! But while it helps with anxiety, it does little to remove the 'blues" of all the feelings described earlier on the thread...feeling like I don't fit in or belong anywhere now..No one wants to hear about or day to day events...why would they when they have shopping trips, vacations, visits from friends from afar or grandkids or trips to be taken, or that house they are moving into or well you get the photo of it all....all the while we sit there and realize the vacations we planned we will never share much less be able to take alone...funds set aside for trips are now used for the care of our partner that we see vanish more and more before our eyes.
Coco - congratulations! I'm so happy for you and so envious. What do you have planned? What's the deal with this VA-Respite center - is this a new program or is it something you just found out about? How often can you take advantage of this center? How great to have a place where you can take him and not have to worry about his care. I'm so happy for you!!! I took a short 4-day trip last summer and really couldn't settle in and enjoy myself, kept thinking about what awaited me when I got home (isn't that pathetic??) I never had a problem going "solo" when I was a single woman, but it feels strange to me now.
Mimi -I'm glad to know that the Valium doesn't help with the "blues", because that is the drug I was thinking about. Sounds vain (and I suppose it is), but I'm very concerned about out gaining weight on the drug. My dh has gained about 15 lbs since beginning his anti-anxiety meds - that's all I would need to send me over a cliff - nothing to look forward to and being fat on top of it. Please keep me posted on how what your Neuro recommends and how it works out for you.
Coco--I so hope that you will find time for rest, refreshment, peace and perspective. Enjoy each moment, and take this time fully for you!
Mothert--You're doing the right thing to seek out some help for what you are going through. Last year I kept putting off seeing my Dr., thinking that I could deal with the anxiety, depression and feelings of disconnection...after all, hadn't I always been able to cope through difficult situations in my life? Well, I'm currently on 1/2 a lexapro tablet and some welbutrin, which has really helped me to even out and move forward -- even with the continued decline of my DH, and the challenges that present themselves every day. Hoping you'll get the right answers for you, Mothert.
This group is so supportive, it really is the only place I can go and truly be me and actually feel connected even though I don't personally know any of you. We are all living the same dramas with various twists, with true empathy for each other because we all understand.
adagio, I'm apprehensive but hopeful about getting help with the darkness that has settled on me; it will be interesting to see what my doc recommends. She's a very gentle, empathetic, well-informed person, so I feel confident with whatever direction she sends me in.