I wondered tonight if my situation is unusual. My husband stopped working 5 years ago this summer, dx 4 years ago in June. Although he attended daycare for 2 1/2 years from 5 to 6 hrs a day, we have not been apart for even 24 hrs during the whole time. I would love to have a few days to myself, but there is no one who could stay with him and he's too early in the disease for me to hire someone for more than 4 hrs at a time. Although I feel a little guillty about wanting some "away" time, 5 years together (under the circumstances) is a long time... I want a day or two off! The only time we were apart before dx was when he went on business trips or golf trips with his friends. Both of those are a thing of the past now. Does anyone else feel the same way? Have other caregivers been able to schedule periodic breaks?
I have 4 hours every other week. I could have more but right now I take him with me, like you do. We manage pretty good that way and I can leave him in the car a half hour while I run into the store. Today he went in 2 stores with me. He pushed a cart in one and rode the electric cart in Sams. I hate to pay $10. an hour for someone when I don't have something special I want to do. Next week on Thursday I am meeting a friend and we are having breakfast and then going to 2 cemeteries. She will stay home with him then. Next month I am going to a Alz. support group meeting for the first time and will have her stay then also. I would love a overnight trip but that would upset him too much for me to even think about it. I know some of the others here have scheduled overnight stays away and things worked out fine for them.
You say there is no one--but who would you call if you yourself had a medical emergency? Is there such a someone, would they stay for a day or two? My adult son gave me a week-end and I just spent it at a beach hotel, doing mostly nothing. At the time CA also had a good respite program, but I know many states are cutting back, things may not be available now. Look in the phone book for your state's Dept of Aging & your local Alz Assn office. See what your county has. It is important to get time away--'me' time & don't feel guilty, you deserve time off & you NEED time off. Some care facilities will take someone for a day or two, it doesn't always have to be permanent placement.
Also, again, at the time Easter Seals had a program - I don't know if any of them are still operational, but you can try. http://www.easter-seals.org
Federal Citizens Info Center - 800-333-4636
Shepherd's Centers of America - www.shepherdcenters.org - 800-547-7073
DH is FTD. Our routine has been that several times a year I would go out of town for 2-4 days to visit my children who live 3 hours away. He's gotten to the point now that I feel he must have some care while I'm gone so starting tomorrow a caregiver is coming in twice a day for the 4 days I will be gone. It is expensive -- about $20/hr but still less than we would pay if he was in an assisted living facility round-the-clock. He insists he doesn't need anybody to care for him so we are going to sneak that part in under the guise of her being here to do things around the house for ME while I'm gone. I am hopeful that this will work. He met her today for the first time and she joined us for lunch. It went pretty well and I think he liked her. She will be here to start his morning off, prepare lunch, spend time with him as he wants, put the dogs in and out and get him settled for his afternoon naps. She will return in the evening to see if he wants to eat again, help him however needed, do the doggy in/out thing one last time and sort of put the household to bed. I am about to go out of my mind at home with our situation and really need this break. I certainly hope it is worth all the preparation and expense. If this goes well I hope to treat myself to monthly vists to the grandbabies. I find that I'm more tolerable of his behavior even after only a few hours away. I think 24/7 is just asking for trouble -- I desperately want to be a caregiver who outlives the dementia patient.
There are a couple of reasons that I think it’s very important for me to start getting out alone on a more regular basis. The first reason is that I need to remind myself what it feels like to be alone and independent. I need to start getting used to the fact that I will be alone permanently at some point. I’ve realized that if I spend 24/7 with DH now, I am only making it harder for myself when he is eventually not here. I need to get used to dealing with that aloneness in smaller doses now.
The second reason is that if I get away for a few hours, it’s like my mind clears and I can think like “me” again. At home I am surrounded by needs to be met and chores to be done. It’s hardly “respite” even if DH is asleep or not home. I’m planning to start (if nothing else) going to the nearby library to have peace and quiet for a few hours every week. I think I’ll be able to think more clearly when I have a break from this. Since there are a lot of big decisions in our future, I want to feel like I’m thinking clearly when I make them.
Oh, in my case—it’s been over six years. It really hit me the other day how long that was when I realized that someone who had just finished sixth grade when DH was diagnosed would now be a high school graduate.
I highly recommend an overnight outing. A full weekend is even better. Not only do you come back refreshed, you are able to deal with the day-to-day problems that arise better. I just had my first overnight in over 6 months (I had a one night overnight then too) and it was wonderful to be able to go where I wanted to go, when I wanted to go, and forget about the 18 wheeler that sits on my shoulders 24/7!!! I was able to start thinking about the future some, and just relax.
We get so caught up in taking care of our spouses (spice) that we forget to take care of us, and it is hard to do with that added weight on our shoulders. Our children can take care of our spouses for one night. Maybe not as good as we would, but they all survive and are okay! I know that some of you don't have children living nearby, but maybe you could visit them and leave spouse while you went out for the weekend during your visit. Or maybe there other caregivers in your support group (or from your church or neighborhood) who would be willing to watch your spouse if you watched theirs the next weekend.
If you want to do it badly enough, you will find a way. There is no need to feel guilty for NEEDING to get away to refresh yourself. Your spouse, if he/she is aware that you are gone, will forget the weekend soon after! You are doing it for both of you. Respite is needed so that you can do a better job of caregiving. NO GUILT IS ALLOWED!!!
My DH had a Mental Breakdown in March 1988. Since then, he was hospitalized for 3-4 days to regulate his electrolytes the first time they dropped, in 2005. In 2006 he was hospitalized from mid-August through mid-September, to deal with the second electrolyte drop, change Psych meds and in doing that determine exactly what mental issues needed to be dealt with. That's when he had his neuro-psych test, etc. and we were told VaD on top of the Schizo-Affective Disorder and his learning Disabilities. Once more, in March 2007 he was kept overnight following an ER trip for a suspected TIA (confirmed). I was at the hospital most of all those days. Those are the only days that come close to us being apart. The longest times apart since the Mar. '07 hospitalization, were the days of my out-patient hernia surgery; my colonoscopy; and attending the play my brother and his son starred in. Other than that there have been Dr.s appointments,a family picnic, a wedding shower, and my niece's wedding--all done in 4 hr. segments. That's 21 years 2months by my count. Granted the earlier years were easier in a lot of ways, because he was more functional, but it was still caregiving in all the important ways--finances, medical, etc., and 24/7.
Believe me when I tell any of you--get some help in early so your LO gets used to having helpers around. Find ways to get breaks. And keep in mind that whatever on your do list today doesn't get done--will still be there tomorrow. Prioritize by what HAS to be done, what your DH needs,and what you want or need. THEN prioritize according to what needs doing the most. Make your want or need come first whenever possible.
You have to do this to keep going. You'll burnout if you don't.
Last Sat. when I took my Total Indulgence trip to NYC I got my husband through toileting, then left at 6:30 a.m. and got home at midnight; didn't disturb him. My daughter had handled him fine. I'm glad, bec. last summer when she was in charge for a few days things did NOT work out so well (for her; he had a tia she didn't know how to deal with). But this trip last Sat. was a real relaxer for me, not the half-work/half-play of my time in Maine. Highly to be recommended, to get away! FAR away mentally.
I took a break this spring. I booked a cabin at the local Military Rec Center and had three of my grandchildren come spend the week with me. He called me all day everyday on my cell phone and my daughter brought him out to fish and eat in the evenings and then took him back home for the night. I feel like a new woman. My whole attitude has changed. At first I did feel guilty but then I realized I might never get this opportunity to spend a qualility week with the grandchildren so I chose to make memories with them.
i have never spent a nite away from DH in over 10yrs. just last yr i started 4hrs respite on fridays. we are attached at the umbilical cord for life:) - divvi
Can I still be attached at the umbilical cord after taking two nights off, six months apart, in 47 years? I sure hope so...I didn't know that one meant you couldn't have the other.......
It did it for him as well as for me....I'm a better caregiver after my night away.....
Betty--Thanks for all your suggestions. Here is the situation. In many ways, my husband is quite high functioning. 4 yrs. after dx, he still attends board of director's meetings for the nonprofit he's been involved with for 30 plus yrs. He fits in socially with all our friends. He is not at a stage where I can put him in a facility for respite, even for a few days. He's a young-looking and acting 64 yr old--the 40ish adult daughter of one of the couples in our support group called him a "hip" guy. Yes, there are people whom I would call in case of medical emergency, but this is, plain and simple, not a medical emergency. We have no children between us, and his daughter is not someone I would be comfortable leaving him with. I'm just getting him used to having an aide here for 4 hrs a day, but he would freak out if I tried to leave him with a hired person overnight. The only thing I've been able to think of is for both of us to fly to Dallas, I could leave him with his sister and go to a spa. She is willing to take him on business calls with her, and that would appeal to him because she could say she needs his help. That's about the best I can think of.
marilyninMD, if he can fly, go for it. Sounds like a winner to me. My 2 daughters will stay with my dh if I want to go overnight but quite frankly, right now I have no desire of a place to go. I will keep my options open.
In the meantime this week looks good. Tomorrow I am going to a Ladies Club Meetine for 2 hours in the morning and dh is going to stay by himself. Daughter lives next door and will keep a eye out. I am going to bring home lunch for both of us. Wed. my respite lady will be here for 4 hours and I will amuse myself in town. Thurs. I have another 4 hours with SIL here while I go to Cementerys with a cousin and also breakfast,Thurs. night is my High School Class Meeting, Sat. daughter says for me to go do something for 3 hours in the morning and she will take her dad to a fundraiser breakfast while SIL does some work here. Don't know if I can stand all of that freedom or not.
Lois, I'm glad to see that you are being so active! It will make us better caregivers if we have some time away each week. It doesn't have to be overnight - just some time for yourself occasionally. I firmly believe that!
My needing overnight one night twice a year is due to the fact that my husband is up half the night, and has accidents at night that I have to clean up, and clean him up, etc. so that I don't ever get to sleep all night long. My body seems to have adjusted for a couple of wake ups, but some mornings it is so hard to function when you've only gotten 4 hours sleep and have a full time job.... <sigh> After watching the caregiver section of the HBO documentary, I noticed Sancho (I think that was his name) had a person stay with him all night at the home and the family had to pay extra for that service. I guess I'll be doing this until it's over.......whether a few months or several years. But I will want my two nights a year off!
I have not been away from my DH for 18 years. His memory problems started 10 to 12 years ago, maybe more. He was not diagnosed until 4 years ago, but by then I knew what it was. He has amazing ability to cover his disability in social settings, but may get lost in large public situations. He needs to use the restroom everywhere we go, even if it is to pick up 3 items at the grocery store. He is fine when left alone for about 2-3 hours in the daytime. He gets anxious if I go to a meeting at night,even down the street. I am secretary of our homeowners association and he keeps asking if this is almost over when I go to monthly meetings,down the street. I would love a weekend away, but even if one of our kids were here, I think he would be upset. I also thing there is a co-dependency issue with me. I do worry about him when I am gone too long. Could I take a day and a night away, I don't know.
i would love to take a 2 nite trip to vegas =just a girls nite out thingy.! but since i never have been away from DH at nite i am not sure i would enjoy the whole time without worrying and checking in on him all day. eating out in good restaurants, BOOZE! haha. and a fun show, a little blackjack,shopping, people watching from the bars, haha. getting dressed to the nines each nite.. sigh.. like the old days when DH was along. someday maybe it will happen!divvi oh yeah, like the commercial says,'what happens in vegas stays in vegas'...
One of my problems is dh and I have been together almost 24/7 since I was married at 17. We owned several businesses and farm and we have been attached by" umbical cord or hip" forever. We never took many vacations. I think if I had worked away from home it would be easier for me getting out myself now. Going to try to do more and we will see.
My daughters want me to try an "overnighter" just to see if DH would be okay with it. I would spend the night with one of the daughters, but I just can't bring myself to do it yet. He has problems when I am gone for 4 hours as it is.
imohr, i do understand the attachement. once we are with our spouses 24/7 for so long its seemingly much harder to think of leaving them for respite. but that said, if i had someone -family i trusted to stay a nite or two, i 'd be planning my respite in a split second.! my concerns are always how they would handle any emergency. family i would trust not so sure i'd be comfortable with an agency aide sleeping in room with him at least yet anyway.. i have thought it over it would be easy for me to put a twin moveable bed in our bedroom. i just havent done it either, but know we should be doing it now to make the 'letting go' a bit easier over the long run. divvi
divvi-don't rush the letting go. It will come too soon. I doubt it is something you can prepare for deliberately. It just comes up and socks you in the face when the time is right.
doneit, thanks for the reality check. i know that will happen soon enough but those of us who cant let go for any real respite, will have it sooo much harder i do believe in the end times. 24/7 tied at the umbilical could take both if the cord isnt cut a bit at a time. i do understand what you are saying but there may be yrs ahead still and we do need to work out a bit of time off IF possible anyway we can - i probably wont but i can say it on paper.. haha. divvi
Ten years ago when my husband was in the hospital and came home to a hospital bed, I had already moved into the spare room bec. he was so restless at night and I couldn't sleep - but I could still go in and cuddle from time to time and did so. Having the hospital bed made that impossible, or nearly so. All of this took a lot of time of feeling lonely and separated. I don't mind it now at all, am glad to have the bed alone and not disturb him, but I think it would be really sad to have him move out or die while he was still sharing the bed with me, on top of everything else.
briegull, I know exactly how you felt. When dh started sleeping in his recliner several years ago, because of his back and he said I snored, also I like to read in bed, it took me almost a year to get used to that, because I felt hurt. Then after I got used to it, it is the greatest. I can, read, watch TV, eat popcorn, use my laptop as late as I like and it is MY TIME> He sleeps better also, so it is a win win situation. I would not want to go back to sleeping in the same bed, although now I have a TermerPedic and two people can sleep together without disturbing the other. He almost always comes in for an hour of sharing my bed early morning.
I also think it starts the "wall building". At least it did in our case, but I think with AD it is a plus. Don't know if that makes sense or not.
We have had two weeks now with a Home Health Aide coming in. Becky's services are paid for by the VA. She is terrific with lots of experience, professional and personal, with dementia. She is very open to learning all about FTD. She comes 3 times a week for two hours. It's wonderful for both Jim & I, and my Mom. Jim will talk with her about me,his feelings re;FTD, etc. All things he would hesitate to talk to me about. She come from 10-12 on Tuesdays, 11-1 on Wed (Mom and I go out to lunch) and 10-12 on Fridays. She vacuums, dusts, does up any dishes, cleans my bathroom, helps Jim with his shower, takes him for walks, etc. We love her. This gives me time with my Mom that we had been missing, time to just run errands or our favorite, sit in the park and drink iced coffee. We are also making a real effort to NOT schedule any appts for Mondays and Fridays. This gives us 4 days of peace and quiet. Most weeks I can make it work. This week was not one of them, lol. Oh well. The only time I have spent away from Jim was when one of us was working or when I have my annual girls weekend. The big difference now is that we are together 24/7 and we both need breaks. Jim has lost his interest in going out shopping or socializing, so he is happy that I am getting out. God I love that Man!
I am back I love this sight I can relat to you my ex husband now after 16 years I need a break after 6 years of this ad he is going to be going in a home .he is 16 years older then me I will always will love him,.I work full time and I have to keep living my life!