There is no shortage of advice on the internet regarding how to "take care of yourself".
But, for those of us who have LO's with dementia it seems to be a challenge of a different sort.
Today, for the first time, I just went to sleep. H was pacing, the same routine I have described in other posts: from bedroom to bathroom, to kitchen, back to bedroom, etc. While he did not pace at all during the weekend, he made up for it today. For five hours! I had sequestered myself in my room with my android and headphone but could not drown it out. So, I gathered the animals and said "it is time for a nap".
As others have described, I too have my own house space; my bedroom, sunroom, kitchen, home office. Except for the kitchen, none have tv, which his bedroom and the living room have. He uses the kitchen but does not go into my bedroom or bathroom or the sunroom.
Certainly I do not go into his bathroom. Forbidden by him and, well, need I say more...
Long introduction, but I would like to know, what do you do to take care of yourselves? Yoga, meditation, aeorbics, prayer, journaling, a certain diet, meds, alcohol or lack of it? What helps you cope?
I am learning to knit..nice mindless activity..he can listen to whatever he wants on tv and I just do something creative. Or I am on my laptop..I get a hike in once a week but need more PFT ( physical fitness time).It is just I have so much work, the normal crap from day to day that there are not enough hours. I can't stand clutter and that is what my battle is right now...getting rid of it. Only DH keeps pulling things out...and it is everywhere, his scrapbook and pictures, and WWII videos...and so it goes.
I have my computer in my bedroom and play cards or word games to relieve the stress.Also,I get up at 5PM, walk up the driveway,get the paper and usually have an hour or more until DH gets up to read the paper and do all the puzzles. This seems to start the day out OK for me.I also go out to the barn and care for the 9 cats and pet them. They are a great stress reliever,as is our dog. So far I have not felt the need for any medicine to help me,tho' my docotor asks me every 3 month visit if I need something.The sundowning is the hardest thing to handle,looking forward to spring and longer daylight.
While it is hard to focus on anything but taking care of your loved one, you must look out for you if you are to survive this trip. Remember your loved probably always had your back when they were well. but now they have an illness from which they will not recover. Now with that in mind if you are to survive you have to take it up yourself to do whatever helps you to survive. Whatever that is you have to do it. Survival is a very basic instinct and you only go thru life one time and no back tracking so you have to look at today and to your future if you are to survive. I pray for all of you who are at this stage but my prayer is for you to gain strength wisdom and increase you faith so that you can remain strong in your journey. May God bless each and everyone of you during this long and difficult trial. Bruce D *
My dh is still on his sleeping mode 18 hours or more a day. This requies me to fix 5 different meals a day I am sick of it. Well, not really meals, but food served. I get up early and eat...he gets up late and eats....I eat lunch...he eats lunch after his long nap and then I fix dinner for both of us.
There are so many creative things I have done all my life and I love it. But, how can I do them when it seems like all I am doing is fixing food? Also, I have to do all the outside chores related to weeds and flower beds, keep the patio and the patio furniture clean...and pick up after him as he just leaves things where ever he might be.
Today, for some unknown reason I feel like I am hanging on by a thread...I hate my life. Things will be better tomorrow...my cleaning lady/caregiver comes and I will have 4 hours to myself shopping for nothing or whatever I decide to do.
judith - suggest packaging small meals at once. Then you can just reach for the bag, put on a plate and let him eat. your routine reminds me of my grandkids that were brought up to graze. They are always wanting to eat. Make his breakfast and lunch when you make yours.
I am in with JudithKB, and though I do find some small moments, my life is trying to do all those things and still make a living. I make my product at home, and it takes me all week to do that. Always keeping a side eye out for him, and so many interruptions I just feel like giving up some times. I don't think one can though.
I take time to myself on my quilting blog, answer emails and post about what I do. I quilt and embroider, I have quilting friends and embroidery friends that get together when we can, usually Tuesdays and Wednesdays, though it's getting harder to meet with them, as the days DH goes to DC is Mondays and Thursdays. I'm finding I have to watch him every minute, if he's quiet, he's up to something...I just don't know how he gets to hide the things he does...seems to be very sneaking about it, as i never see him doing it.
Julia I am so glad you are easing in to the day care. And I also have noticed the "sneaking", in to my purse one day, and always trying to find keys.
I was so low.....blase...could not get it together for the so many things I need to do, and most of it creative for my market sales. (mini gourd key chains and boxes). My sister from Canada just prodded me, and I have just finished a real strong cup of local coffee, and am heading out to the worktable. JUST DO IT!!!!!!!
First off, it is so good to see you here Bruce. I hope you are doing good. Some of the ways I take care of myself is I am going back to school online. Even tho this is stressful, it is a different kind of stress and it helps relax me. I am going to use this schooling to help me acquire an income once my dh is gone. I also have my animal babies to help keep me sane. I also take my dh and we go riding just to relax both of us. He enjoys the sites even if he doesn't remember what they are. It is relaxing being out seeing nature. At this point it is easy to find things around the house to do to relax, since I like cleaning and cooking, but it is getting harder to do this the faster my dh progresses in this disease. I encourage everyone to find some outlet even if it is at home. I also enjoy my plants and gardening. Joy and relaxation is all around us, we just have to tap into it. Hugs and prayers for everyone.......
My days are spent online most of the day/evening playing games and checking here. I am getting bored with farming but really enjoy 'Words with Friends'.
My computer and my Kindle are my friends. Since DH goes to bed by 6 p.m. and sleeps very well, I have the entire evening to myself. Sometimes, it's a long bath, a manicure or pedicure. Or I bake something. gooey! But I always find something to do that's a little different than what I have had to do all day watching DH.
I need to get back to making clothes for myself and machine embroidery. I tell myself that every day and so far....nothing, nada, zilch etc.etc. If anyone has a tip that will motive me I am all ears. Telling my self "just do it" doesn't work either!
I have water exercise twice a week at the local community center. It is for seniors the instructor is 75 and very active she is also the life guard for those who do lap swimming in part of the pool. The quiet music she plays is very relaxing. I try hard not to have any appts. on those days. I can still leave dh alone for those 2 1/2 hours altho I've been leaving a note stuck to the cabinet with where I am and what time I will be home. I have asked him if he'd like to come swim while I exercise but so far he hasn't. He could use that exercise he sits most days in front of the tv dozing much of the time.
Jean - maybe if you have a reason to sew. Do you have grandkids, nieces or nephews, maybe a cause to sew for? I find more motivation and joy in making something for someone else. Maybe you can sell things like Joan does. Knowing someone will be buying them may motivate you. but you are not alone - hard to motivate oneself when you feel your life is staled.
I wish I could remember who sang it: "there's fast, slow and stall, no reverse" (Mary Chapin Carpenter, I think.)
I try and try and try to get through every day. Increasingly difficult. I'm still trying to answer the question of when did this start, considering the mulitple differential diagnoses.
I've decided that it started in 2006, when I realized I could no longer trust my H's ability, to be blunt, to think. This coincides with the initial dx of MCI. From what I have read all the px start from dx, but I imagine that it has to be different for each of us.
After prayers, I start each day with two things. 1. I remember something good, something good about him, about us, that came before the crazy overwhelmed the normal, and then 2. I focus on something; if alive after this, something important to me that I WILL DO, after this is over. Are these small things or big things? To me these are big things, things that help me have hope. Help me realize that we are just two persons caught in this thing that has no polite name.
(PS- I enjoy cooking and we used to enjoy long leisurely dinners full of conversation and rational debate. I finally realized that he is done after dinner, so now it is early, and brief. He eats in front of his tv in the living room and I eat standing at the kitchen counter with my tv; such is life with dementia.) Cuts down on the time we have to look at each other, I guess.
Hello abby: my 10 cents. Wife is stage six. I have taken up some hobbies that I can do in the house and keep an eye on my wife. She's fairly easy so this is possible. I imerse myself as much as possible, do website exploration about it. Just something I like and to look forward to. Doing this totally alone for 7 years now. Eight months ago I joined a 24 hr fitness. My wife will come along and sit off to the side and read / look at the news paper for an hour. The exercise has helped in so many ways. I've lost weight, done something good for myself and it was a great stress reliever. Lastly, I finally found a therapyst. It was the single best thing. It was as if I'd clean our my mental pipes. It seems to be working for several months now after two visits. Of course we're all different. Hope this helps. Best of luck to you. Fine, fine people here!
Let's see, what do I do for myself. My very best stress reliever is God, I find prayer is really the only thing that can help me shake the blues and/or anxiety and restores my good nature, gives me patience and compassion for my guy, etc. I also sew a lot, I make quilts and little fun things for my grandkids who just love the custom embroidery I do for them. I don't get enough exercise because I spend so much time in front of my computer just keeping this ship afloat (I was clueless about how much time running our life takes as dh always did the financial stuff and home, car, etc before, I just took care of the house and kitchen), and, of course, I have to spend time with my friends here :-). Oh, I almost forgot about Katie, I think she is really the one who keeps me sane. Katie is our housekeeper/caregiver and she comes every other week on Wednesdays. I walk out the door for the day to do whatever I want (usually grocery shopping and other errands, but I get to do it alone), and Katie cleans my house and looks after dh. Katie has made my life significantly better. Most of the time, life is really pretty good.
"DW", what does that mean? I first thought it meant "dear wife". I guess that assumption says something about our relationship. I suspect it really means, sadly, "demented wife". Someone please set me straight on how you use this abbreviation. I want to mention something that has helped us on this journey. When my wife was diagnosed (at age 57)and I was forced to accept the grim truth, we, consciously or unconsciously, I'm not sure, took the path of trying to do things that we might be doing for the last time in our lives, while we still could. We took dancing lessons and have been dancing ever since. Dancing,there was a time when I was able to look into her eyes and almost forget I was rapidly losing her. As time went by, she lost a lot of the grace in her dancing but I am still able to hold her in my arms and dance on our bare wooden floors at home. She has lost so much but still responds to being held and dancing, as do I. Also, when I can't sit still, it helps me to just dance by myself. It can be very hypnotic and distracting and has been a useful tool for me. Sometimes when she is "in a mood" confused or agitated I can use it to calm her and, unless it's really bad, it works. I don't mean to sound like a Pollyanna, I'm not . Sometimes I feel my life isn't worth living. Some things just sometimes help us with "keeping on keeping on".
I have started walking again,for exercise, last year I was recovering from a broken leg. Since I can't go far thankfully we have several acres and I can go round and round until I have logged a couple of miles. Waving at hb as I go by the sun porch where he is puzzling. I use this time to pray and think and enjoy the outdoors, part of my walk is through my garden and I can plan what to do next. We also use music for many hours in our home. Oddly enough hb now listens to praise and worship music which I enjoy and uplifts me, he used to like bluegrass "before". As Joan mentioned in her latest blog....one day at a time!
DW does mean "dear wife". On my home page - www.thealzheimerspouse.com - on the left side, there is a resource box labeled "Abbreviations". Most of what we use is in there. I have started a different thread to welcome you.
Charlotte, I never had children so obviously no grandchildren! The only neice I am really close to lives in Scotland and she is only two and a half years younger than me! I was number seven of eight children and I am the only one left, most of my relatives (nephews etc) live in England and I don't really have any contact with them. I did make Baptismal hankies for my church for a number of years but quit that a couple of months ago when I quit everything else. I'm not sure I will go back to making them...I have NEVER received a thank you from anyone. I know that isn't a reason for doing anything but I think it is just good manners to acknowledge something you receive from another person.
Sooner or later I will get back to doing something and I hope it will be like Joan says...sooner rather than later!
When DH first started daycare..only 4 hours 2 days a week, I did my shopping and errands on one of the days. The other day, I wandered around the house wondering what I was supposed to be doing. I didn't feel like the respite helped me very much. Today, though, I visited a good friend who is in the hospital. She was feeling better and we talked, laughed and had a good time then I met my dear cousin for lunch. Lots of good conversation and catching up. Enjoyed it so much. Wow! Today I realized that what I've been needing is to be with other people (without having to watch DH). Next week a good long walk with a friend and then lunch at a nice restaurant. Joan, I've found something to look forward to. (smile)
dazed, i was thrilled to find that during the noonish hrs so many single females are in the movie theaters! haha. seems we all had the same idea. i was thinking i would feel distress about going alone. no, we all clustered in the center of the theater and it was really fine. i will be doing movies more now! so many good ones and its a good 2 hr not to expensive entertainment! yes being in the world where conversation and laughter is so necessary. divvi
Jean what about volunteering to make hats for cancer patients, making hats or small gowns or socks for premies,,,,,,, or something like this. I know you are a giving person and this is a way you can give so much of yourself in your talent and compassion. You sound like a wonderful person and I understand the "putting off" stuff. I pray you find what makes you feel like picking up and taking care of yourself. Hugs and prayers for ya......
Julia - glad to hear of another quilter. I can't get out anymore and the company of other quilters seems to motivate me, So, I have a LOT of UFOs and won't let myself start anything new until I have finished at least one thing.
I have been looking up patterns for regular embroidery for a sampler. I can't cross stitch due to my macular deg so regular embroidery has sparked a new interest.
I have made a committment to myself to pay more attention to ME and went back to my old yoga teacher for a private lesson today. It was a very nurturing process.
I am interested in your quilting blog. Hope I am not breaking a rule here. I love reading all that others are doing and it is inspiring and am making note of them.
mammie, thank you for the kind words. Maybe things are starting to move! This morning I went to Walmart and they have started a fabric section again so I bought some fabric to make adult bibs. Now to decide when to start on them!!!! When I get them done I will see if the agency we have home help from can use them for their clients. Onward and Upward. lol.
Andres: Welcome! I also loved your post. I wish my husband was a dancer; he never was very big on dancing. But that must be such a stress buster. Maybe I could get used to doing it alone, just put on the CDs and dance. This never occurred to me! I think I'll try it later today, after I get the bills paid, the laundry done and get some clothes out for my DH. I love to sew but haven't done it in years. But, the dancing I can do. No excuses. I'm going to mention this to a friend whose husband can't dance with her, but I'll remind her she can do it alone. Everyone is happy when they can dance.
Dear friends: Really, one doesn't have to have had dancing lessons to dance. I think even some AZ people with no experience can be lead to dance even if they can't do a lot else. Whatever part of the brain controls dancing functions might be relatively spared. Dancing comes from "somewhere else" in the body and doesn't feel very cerebral to me. (bad science, but I like the idea anyway). Just feel the music and it will tell you what to do. For a start, just hold the person and sway to the music. who knows, you might even get fancier. Someone once said to "dance like there's nobody watching".
DW went to daycare today so I bundled up against the cold(Massachusetts) and went for my 3 mile walk around the local reservoir. A sunny day in winter can be really beautiful here. There's the huge lake-like reservoir surrounded by trees and no sign of civilization. It's a good place to refresh one although sometimes it's difficult not to ruminate about dementia and depression and all that other stuff we want to escape...fortunately the power of the wilderness usually wins and I'm glad I went that day. When it's warm, I would bring my DW and it would seem to brighten her up. She would enjoy seeing the wildlife and was often the first one to spot them. Any day we would spot the resident Blue Herron would be declared "special". I would bring a wheelchair in case she tired. Most days she did not.Shes really not functioning well and it's amazing how much this activity would seem to perk her up (me too).
I love all the response to this question. My first response is prayer. I do a lot of it anymore. We are still going to church three times a week, and there my DH is most himself. He stands at the door and greets, and is also an usher. He prays when asked, during the service.I go to water aerobics 3-4 times a week, first thing in the morning. My DH is usually still in bed, i put breakfast out so he will remember. Its working for now, I dread the day I have to give it up. It is such a stress buster, and so good for me and my physical and mental health. On Tuesday, I belong to a group at church that makes quilts, throws, bags, anything people need. We give them to homeless people, hospitals,burn out victims, anyone needing it. There is a lovely group of women that are very attune to my hardships and help me to deal with things. I have a sitter/hskper for 4 hrs on Tues. My DH and I go out to eat 2-3 times a week, I am good to myself. I do all these things and I am still stressed by all i have to do, it never ends, but I am so thankful for the outlets i have, and the friends who have been there for me. Also my daughter is very supportive, calls me everyday.
Andres, I know what you mean when you say not everyone can dance. My dh was so paranoid he thought everyone would make fun of him if he danced, so we never danced. I always wanted him to just hold me and slow dance with me. I could not dance either but we tried a few times. We both stepped on each others feet so he was upset and he would not try anymore. He did not accept the fact that we both made the same mistake. I missed out on something beautiful. But now....... all he needs is to hear music and he dances to it. The beautiful look on his face says " I don't care what anyone thinks,,,,, I am having fun". How I wish he would have thought this before he got sick. But now we dance sometimes and other times he will dance by himself. He is happy and handsome and it brings joy to both of us,,,, me watching him and him just plain ole happy. This disease does have some good moments...... and music seems to reach much further than the grip of Alz........ Thank God....a good night to all of you and please please take care.....
My first thought was that I miss dancing like I miss singing. My H has no accommodation for what he considers noise. Holy **** would ensue if I played CD's to dance or even if I sing.
As soolow mentioned, I too try to do as much in terms of fitness as I can. I have some equipment at home and try for 45 minutes per day. When and if, I really am going to try tai chi (sp?) as in a class, at daybreak, even thought I am far more a sunset person.
mothert, what I want to find is a "Katie". My gosh, if I could have someone come here to clean without having a hissy fit and watch H in the meantime my life would improve x infinity. I think I remember that you live in the PNW (and I envy you for that as well). Is there national agency that provides such a wonderful resource?
abby contact you Area Agency on Ageing. They can refer you, and may even adminster programs to help. Ever since my DH was released from the hospial after Dx in 2006 we have had some help. In-home help, originally was for personal care (showering, dressing,etc) and housekeeping. At first 8 hours a week, upped soon to 10. Most recently, 16 for him, and here we have a Senior Millage Program I got old enough to qualify for so I get 4 hrs a week personal care and housekeeping. Even if you need to pay something out of pocket, this kind of help is especialy good because your LO gets used to the help being around. Work gets don, and yolu c an get a break, or get other things done. I describe what happens to us when Dementia comes aboard this way. When we b ecome a couple we sitdown ecxh with a plate an d a full bowl before us filled with pieces of paper. Some are alike, most different. We must take turns choosing pieces from he bowl to put on our plate until the bowl is empty. Eaqch of us then has ourshareof the chores of our lives--child care(each); yard work, bills, dishes, etc. The along comes Demntiua and joins us at the tableand rearranges things. The result iswe, the Caregiver, have our own plate, our LO's oplate, and Dementia's plate all for us to do. I maintain that the Caregiver has no business doing chores someone else can do. Their main focus must be the things only they can do for their LO and their lifestyle. Anybody can do dishes, laundry, lawnmow, etc. Having a helper your LO knows is a real benefitas well, if/when you must be away,. This is a part of taking care of yourself.
Pavane, I was a quilter for over 30 yrs. Had to slow down after extensive surgery on my hands,and now have stopped altogether. But I have kept all my material and suppplies. DD says get rid of them since I will not be able to quilt again but I enjoy just looking at the fabric. I have all the issues of Quilter's Newsletter and enjoy those also.I enjoyed hand applique the most,but did a lot of piecing. I had a shop for many years.I asked the Dr. to magnatize the screws in my fingers so I could ho;d the needle,he laughed.I envy those of you who can still quilt.Enjoy!
Thank your for your suggestions. For the last two years I have been doing it all- the plates you referred to. But, since 2004 I have been mostly living differently because of H's decline and that exacerbated in 2006 and then in 2008 when dementia took over normal. Despite many different dx I did not give up hope until 2010.
I went to the website of the state where I am located and there are no benefits or assistance before age 55. The only limited exceptions are for VA or waiver, neither of which apply to my H.
The house and the yard (I can no longer refer to it as gardens, that would be too cruel a joke), need so much rehab.
It is not really chaos but it reflects what has happened. Thanks to your post I am going to consider if there is a better path than letting it all crumble around me. I love birds, and I walk through the jungle to take care of them.
Currently I am thinking about how to 1. get H to ALF and 2. how to afford it because even though I have a px who knows how correct it is?
I remember driving on the interstate in the fall of 2010 and praying just to let H get through to retirement and my offering (?) was that I would not complain in prayer anymore. But God said no.
Taking care of myself includes reading these messageboard entries. Thanks for the tears and the smiles. Thanks again for the sympathetic repite that it is.
We have not qualified for any assistance in our state because we didn't meet the age requirement (62 or 65 depending on the service) and our retirement income (not large by any measure). I am so discouraged now about maintenace of the house because I now have to pay for every repair and as soon as I repair something in the house, DH doesn't understand how to work it and breaks it. Paint gets chipped due to careless behavior, furniture breaks because it is misued. I am reluctant to paint, repair, replace until this journey is over (either ALF/NH or heaven), but I am thinking I need to keep up with the gardens and landscaping so it doesn't cost a fortune when it comes time to sell. Of course, on-going maintenance will be expensive....
I agree, LFL. When you own a home, it's always something. I've also thought about waiting until this journey is over because it confuses DH if I change things around too much. However, keeping things done and the place looking nice makes things more pleasant for me while I'm dealing with all this.
Help doesn't come easily. I know. Keep trying. Check with churches for service groups, youth groups, neighbor kids. Organizations with service arms, Senior Neighbors. Be flexible--a neighbor kid won't be able to be your garden specialist, but he/she can mow, or rake and bag, even plant a bed with minimal supervision. Scouts earn badges for service work, but also for certain kinds of activities--inside or out. You don't need to spend lots of time in a bunch checking. Just do some every little while, and re-check periodically, because new programs and projects are started all the time. I've gotten a daylily bed dug and split by offering the following on Freecycle: Daylilies--you dig and split--take all the extras. It took 3 times offering, but the roughly 4'x10' plot was dug down about 18" , split and thinned. Daylilies, 3 ladies and I, all were happy. Just need to have lots of patienceand think outside the box.