I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. The subject is one I have not seen discussed before, and I would like your input.
No Joan it's not just you. The last time we went to visit friends in Arizona they basically took over doing everything for me. All I had to do was get up and take care of myself. My husband's best friend kept my husband occupied and did whatever he needed. I was able to go to lunch, shop and sightsee with his wife without worrying about him. I wasn't allowed to do any type of chores while we were there. It was wonderful. But, upon getting home, I was really depressed about having to do everything again. It felt like I was thrown into the deep part of the pool and had forgotten how to swim. It took me a couple of weeks to get back into the routine again.
I can even say that when I had to stay overnight in the hospital a year or so ago, it was nice not to be in charge. How sad is that?
Joan, my sister comes to help me out with DH when our live-in aide goes on vacation - 5 days about every 6 weeks. Although it is not "true" respite it is much like you described about your sister's visit. She takes over the entire household while she's here - organizes things that the aide doesnot/cannot, makes the grocery shopping list and shops without needing input from me, taking DH on errands, etc. Even takes the dog to his vet appointment if necessary. It is a WONDERFUL break for me and allows me time to visit with her and discuss "normal" life. And yes, when she leaves I am depressed. I say "goodbye" with tears in my eyes and resent having to go back to the dementia life. Our situation is a bit different than yours because we have a live-in aide, but honestly, I am still responsible for all the decisions, running the household, paying bills, entertaining my DH, etc. My sadness and depression are generally short-lived but the feeling of emptiness and loss of true companionship linger. Fortunately, I know she will return within a few months so that keeps me going.
When my son was murdered over Christmas and we had his memorial service 1/20, my sister, husband, DH's son/wife and two friends from out of town came for a week. That whole week, our friends from church and my former employer, brought every meal except breakfast. I didn't have to plan a meal. There were enough here to watch out for DH, so I didn't have to. They even walked the dog and it was cold, snowing the whole week. After they all left, I was depressed. At first thought it was "normal" and grieving for my son, but on second thought, it was missing the people contact, the adult conversations that went on endlessly into the night. It was sister taking over doing everything for me. I was pampered and loved it. I just let go of everything and enjoyed the time. Afterwards....no so good. Back to the meal prep, taking care of DH...But, I bounced back in about a week and now am back to the same old grind!
Joan, I have not had as much respite as you, but I do get the occasional few hours provided by friends & relatives & I still work one day a week (which will end next month), so I don’t have the chance to get used to the “normal” world. It’s just SEEING the normal world that can depress me. I had a particularly bad night last night with my DH & it took all my energy just to get out of bed this morning & get going. But of course I did. BTW, your sister is an ANGEL! Not everyone’s sister could do what yours did. I love my sister & she is my ANGEL for taking care of our parents when they were ailing, but she could never take care of my DH & do everything your sister did for you. I don’t fault her for that, it’s just that some people can & some can’t.
I have had 1 wk "respite" in Dec. and for last couple of months have had 3 hrs Friday afternoons "off." I don't call it respite because as soon as I'm back, I don't feel rested or relaxed & 3 hrs isn't enough to "detense" while I'm out. I Just step into the sinking boat and pick up my oars and start paddling where I left off. My sister and bil are coming for a few days next week. I'd look forward to it more if I didn't have to plan and prepare meals and didn't worry about hb's behavior as he wanders around day and night (except between 10-2). Hope he doesn't keep them up or get into their stuff if they forget to lock doors. I've warned them offered to ask a cousin if they could stay there and come to our house for meals and visits. Sister said he didn't talk much w/them and walked around 2 yrs ago when they were here. Well, she'll be in for a surprise, I think. He's farther down the trail now poopy pants & all.
Joan, for several years when my husband was about stage 5, I would go visit my family in Delaware, for about 10 days. I got to be just the sister and aunt...it was wonderful. But, when I returned it was harder on me than before I left. I felt so over loaded. When you get home, it hits you in the face. I cried a lot more for about a week (before I got numb again and worked on auto-pilot) I believe I am not going this year. When reality slaps you in the face...it is hard. So it is not just you!
Granny, I hear you! I felt that last year after my return froma 3 week trip. Loved my time away but when I came back getting back in the saddle was hard. Now the kids want me to come again but who is going to take care of DH this time? And on top of that I have a kitty that has a cardiac condition and she requires meds daily...4 of em..I just don't know.At the same time, I want to get out of this hell for awhile. Today has been especially bad, DH has not been the problem it is just all the crap that comes with this disease and the lack of insight on the part of family, both his and mine and the ultimate lack of support..
The message I keep getting is something akin to "Thank God for Mimi,she does such a great job" and what is unsaid is "so that we can go about our normal happy go lucky lives"...guess the resentment built up to the point I had a meltdown today. Me and the reactors in Japan!
Mimi-do we have to squirt you with sea water to cool you down? I think we all have meltdowns and then feel badly about it. I think it's the hopelessness of the situation. There is no way out.
This happens to me too. I actually feel real and normal when I get away from this for a while and then it feels like starting all over when the reality snaps back. We should go though when we can because for a little while we do feel normal and do get away. That's got to be important.
I don't believe there is anything we can do about the letdown. The whole point is that our worn down soul actually forgets about this for a little while.
One idea might be to plan something for ourselves for when we come back. Some kind of treat for ourselves that we save up for the letdown after.
BLUEDAZE* Yesterday you would have needed a firehose to cool me down.I just got to the breaking point after hearing kid no 1..just got back from the beach...got a huge diamond ring ( mega bucks) for her anniversary and later in April going to the beach again... Kid no 2..just got home from one2+ week trip to see friends and next month going on another for nearly a whole month to the beach with sisters.....and in Oct going overseas for about a month......kid no 3..the job is just work which I am especially good at..the area I live in is one where everyone is active..lots of biking and hiking and oh the wine tasting is fabulous, ......
and here I sit.....let's see...well to start out...set out all the meds forDH and Kitty.....just fix anything for breakfast because I know that " I'll get something later means he won't eat at all and after taking insulin this is not a good thing......pick up the kitchen a zillion times cuz he won't wipe up anything and don't forget that floor too, spills there as well.....start the laundry....get the bed made...empty the trash ( he says he will do it but somehow it doesn't get done).....urge him to get cleaned up for appointments....get him to the doctor, the PT, the barber shop.....go to the grocery store....go the the pharmacy...go to the gas station....get the car in for tune up....figure out a meal for the evening....and don't forget lunch because he won't do that either though he says he will..or forgets if he ate and then won't just in case he did already...doesn't want to get fat you know!
yep..my situation is sooooooooooo much more exciting than going to the beach, travelling overseas, ( getting a surprise gift for me now is him just being alive in the morning.. you know when the hubby has heart disease, diabetes, hx of stroke...birthdays and anniversaries are long forgotten now)..yep life don't get no better than this!
I look in the mirror now and it doesn't take ALZ to wonder who that is looking back at you! I am ready to take down the mirrors not for his sake but for mine!
Mimi, I KNOW exactly what you are saying...and the others too....I feel the same way! I have 5 days of respite a month, and I feel like I have been let free for those five days...and the first day he is back home from the Hospice Hospital, I wonder how I'm going to make it for three more weeks. He is like a two month old. I feed him soft foods (including Junior baby foods) and his drinks through a straw; I talk to him but I don't think he has any idea what I'm saying (he can't talk). He can no longer stand up even with two people holding him.
And when others tell me about their travels (one son is visiting in Florida and the other in Washington, D.C. right now) the thing that keeps me going is that I will be traveling soon. Making plans (with no dates) is what I have to do to get through this. We have been together 49 years (50 in August) and I loved the man I married, and I'm taking care of him at home, and it is so hard to watch him fade away.......and after respite it is worse for a few days. But, without respite, I doubt I could have made it this far!!!!
So we take the good and the bad, and lean on friends, and vent, and plan for our future by taking care of US. I'm exercising, dieting and have some time each day just for me. This disease is NOT taking me with it!!!!!
Returned the other day from the "respite from hell." However, I did have some moments of feeling NORMAL the day before I left Virginia to drive back to Northwest Arkansas. I went to a World Market and bought some rugs and stuff for the house to enhance the sale or in case we stay here to enhance my life a bit. No one knew me. No one knew I am a caregiver. We have lived in tiny tourist town for the past 3-1/2 years. I liked the anonimity. I had been looking forward to the drive out to VA and back thinking it would be restful ALONE time but was hit with bad news my first night away by email regarding a tenant in our house in Richmond and ended up dealing with evicting her while I was on the road and during my stay. Anyway......driving back the hardest part was knowing I was driving TOWARD my life of caregiving and all the problems I have here with the LTC insurance and other issues plus my declining husband. It was so hard to motivate myself to keep going towards a negative.
Today I'm painting a room downstairs to prepare for realtors to come give me an idea of what we could get for the house. I sent DH's caregiver to the library to get me some audio books because I can't stand my blank mind. I keep wondering what am I moving toward? The only thing I know about AD is that it keeps getting worse. Hard to motivate working towards a negative. But this is partly my old depression talking and the POST RESPITE DEPRESSION too.
Again, I urge those planning respite not to try to combine responsibilities with pleasure. I now need a respite from the respite.
I have been a widow for 15 months now. During the years my husband suffered with his Parkenism with VD and AD I never had "days away respite" because in our case it would not have worked without dire reprecussions. I did have a lot of family support and one 4 hour day a week out by myself, most weeks in the final year. When I left the house for 4 hours, it was like "being set free" as Mary said. I didn't have the "after respite depression" you all are talking about, but then I was not away for as long as you were.
However, now, after 15 months, I still marvel at my freedom. I face each day joyfully because I am FREE. I can eat when I want, sleep when I want, go where I want and do what I want - when I want. It is not that I don't miss him, or I didn't love him, it is that for so many years I was "carrying him like a anchor" around my neck. Like a bird in a cage, or a wild animal in a cage, we all want to be free. Everyone deserves freedom. Don't feel guilty about wanting to be "Free". You will also have your "Free Time". I urge you to not waste it dwelling on what was....look forward to "what can be!! Take care...
Imohr* - Thanks for your comments. I think some of us do think of the “freedom” we will have in the future, but we do feel guilty. It’s just a normal reaction for me. I tend to have a guilt complex anyway. I did have a few hours today. My daughter came & took DH on errands with her, so I went to the dump with “stuff” he wouldn’t let me get rid of if he was around. I had no ambition this morning, but it’s amazing what you can get done when you have a few hours by yourself!
Imohr, you are my role model. I am doing the best I can to take care of my husband and I still have him at home. I make mistakes every day but I refuse to feel guilty. I just pick myself up and try to do better and that is good enough. At 83 I don't have a lot of years left and at times I do feel like I am stuck in traffic and I am not moving forward....
Like Bama, I have my DH here at home. Today we had our meeting with the Lawyer about our trust..can't get this finished quickly enough. It was an important session in that the lawyer had to meet with him alone and ask a few questions to make sure he is in a position where he understands what is going on even though he has to be refreshed on it later. So that was good.
When we are out, he seems to engage with people pretty well, his humor comes back etc but here at home when I try to talk to him about much of anything it is like talking to the wall...or to myself...Tonight I asked him if he remembered how we celebrated our 25 anniversary which was only 6 years ago..he recalls not one thing about it..our trip to England, Scotland, and over to France and then Flanders Field. He was always such a history buff and a couple of years ago we had a trip scheduled, that was interrupted by femoral bypass surgery, to go to Europe again as one site he always wanted to visit was Normandy. Now this will never happen.
Like so many others have said, things can seem to go along at a certain level for quite awhile and all of a sudden there is the drop off..like being in the deep end of the pool...It is so upsetting.