I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Advice is easily given - not so easily followed, don't you think?
Just looked at your scaves, they are gorgeous!!! Having Trigeminal Neuralgia, I need to wear a scarf from late Sept thru June. I will be a repeat customer :)
Oh, Joan, I feel for you! Hope the help comes through to you. I have no help here either. None available for my situation. So....no respite for me. What with dealing with the legalities of my Mom's death, now a year ago, and my son's death last Dec., it's been a rough year. Fortunately, DH does go to bed early and sleeps all through the night. So I have most nights to myself- usually with a long hot bath, then reading or on this website. My days are not so good, however.
Your scarves are beautiful! Good work. Hope things will slow down for you.
As much as we know we should take care of ourselves so that we will be better for our spouse, we just can't do it. As spouses, mothers and fathers, we were there for the others all our lives. We can't change that now. If there is time for us, great! If not today, then maybe tomorrow. The tomorrows stretch out to a week or more and guess what? We still haven't done anything for ourselves. If I can snatch an hour to read, I feel lucky. I can still leave dh for two hours but I know I probably shouldn't. Maybe we can all make a pact to start off with just 15 min. respite a day and work up. Do you think it is possible? Maybe some days but not all days.
I have one of Joan's furry scarves and love it. Even though I live in Fl. I will still wear it to dress up an outfit. Gracie would love to get her paws on it I'm sure.
I love it when people say, "Take care of yourself". It is hard when you can't take a walk by yourself and If you take your DH he falls flat on his face. This happened to me the other day. I saw a doctor today who specializes in osteoporosis. He told me I need more exercise to prevent a hip fracture. Any time I get a minute, I am off to the grocery store or the drug store. On the on the other hand, If I do break a hip, who stays with him. He would be in a nursing home for sure. Our kids have very busy lives with kids, jobs and lives.
maryd, I was thinking exactly what you wrote except my DH did not fall. He's just so slow and tires so easily. Ever since DH's diagnosis, I hear from this site and from all my friends and family that I have to take care of myself but how? I can no longer leave my DH alone even for a short time.
I always have pangs of conscious when I tell someone to take care of themselves--it certainly was not what I did--and I paid for it. So I usually add that I know it's not easy and say it anyway.
Early on in my Caregiving I didn't take care of me--DH, everyone and everything else but not me. Fell into Clinical Depression on top of my physical disability and high blood pressure. What I learned was: There will never be enough hours in a day, but what is critical will get done and what isn't, will be there tomorrow. Unless you're blessed with elves, chores will be there until you get there. Items that are critical are: LOs meds, meals,and primary care; Caregiver's care (health and mental health); vital paperwork on deadline, and the unexpected. I hear all the time LO doesn't want anyone here, won't tolerate help. Know what? If you go down your LO will have no choice and it will be traumatic for both of you. I hear, but I don't need help with household chores and they don't do them the way I do. You are now dealing with your own plate of responsibilites to your household; your LO's plate of responsibilites to the houseold; and a whole 'nother plate of responsibilities required by your LO's illness. You need the in-home helper to take any possible items off your plates. Anybody can do dishes or wash laundry, but not just anybody can set up your legal paperwork or handle your bills. As long as the dishes get clean, the floors swept and mopped and the clothes clean and folded and you didn't have to do them,what does it realy matter if it wasn't done your way
I no longer drive, and DH cannot be left alone. If I am to get out it takes special arrangements--planned well ahead. I do get at least one 4 hour break a month provided, i just have to plan and schedule. DH and I go to the store every Sunday morning--he for coffee and to watch the people, me to shop the odds and ends you really can't delegate to someone else. Beyond that, 2-3 times a day I come here; e-mail with friends and family; I read alot; and I knit. Notice--all these can be dropped quickly if needed, but cn be picked up again anytime. I also try to hold to a set time when the chores stop. Nobody working a"job" works day and night. Generally, after supper I don't work. When he's nappingorsleeping--it's my time.
carosi you have my greatest admiration friend. you are an inspiration for all caregivers. joan there is never enough time in the day to add something for ourselves. your scarves are beautiful! you are indeed talented with a needle:)
Joan- if your dad is in an assisted living, why are you doing so much for him? I would think they have someone who can do his nails (finger and toe), and some of the other stuff. Why do you have to run when an emergency comes up? I think you need to find a way to cut down the things others can do for your dad and be there to oversee everything and love him. that is what others have been told to do with their spouse - you need to do it with your dad. IMO
Just one more area where we spouse caregivers are quick to advise others, especially newbies, how they need to do this or that to get through this experience more easily. Yet, all too often we 'veterans' find ourselves having those same problems ... unable to pull the trigger when we know better! In my case, I know I should be bringing in a companion to stay with my wife a few hours a week to give myself more 'me time' ... but I still can't quite pull the trigger knowing my wife doesn't want a companion! I know better ... I know, just like with driving and other emotionally laden issues ... we spouse caregivers need to do what we need to do, regardless of how our AD spouses may react. But ... it's not easy, as we veterans know even better than newbies! You have my sympathies, Joan!!
The staff at the ALF does all the physical work for my father - changing his Depends,showering, dressing, undressing, shaving, transferring from wheelchair to chair. He gets wheeled to the dining room for each meal. They give him his meds. They "encourage" him to attend activities, but he's pretty stubborn about not wanting to go. Before my surgery, I used to wheel him over here for a change of scenery or sit in the shade by the pool with him. Now my shoulder isn't quite ready to do any heavy pushing, so he doesn't get out much.
However, I haven't gone into detail in my blogs or on this board about his medical emergencies, because the board and this site are for spousal issues, and I prefer to keep his life as private as possible. Suffice to say, he has increasing incidents related to one of his medical issues that could be life threatening. When one occurs, I want to be with him until it passes, and he is safe again. I run over there when there is an emergency because I don't want him to die alone.
The nail situation ticked me off, and I have brought it to the attention of the director. The staff should be cleaning and trimming his nails. A podiatrist comes every so many weeks to trim his toenails and check his feet.
I have a care management meeting scheduled this week to address any issues they may not be handling as they should.
In the meantime, Sid and I stayed in bed this morning about 2 hours longer than I should have, which puts me behind in house stuff, web work, scarf web work, and exercising. But I got two hours of extra rest, which is a good thing.
joan i agree a care meeting to get them to take over as much as possible. the money for ALF isnt chump change and they have many services as you know to cover most care issues for the elderly there. you need every support that you can get. i can see the reasoning of wanting to be with your dad until the crisis passes. but you may run yourself ragged too.
Joan, I don't mind if you talk about your father. As caregivers everything we do has an impact on us one way or another. Your site may be for spouses, but the care you give your father affects how you care for your DH and yourself. The same way the care I give my DD at home affects how I handle my day with my DH. I can fully understand your wanting to be with your father. And wanting to keep some things private. But if you feel the need to talk about it, we are here. Just as we talk about our families, kids, jobs, pets, etc. What is troubling to you is important. We are here for you as you have been here for us. Thank you for all you do.
Joan: No problem with me if you want to talk about your father and if it helps you good, then please do so.
I loved your scraves. Didn't you just recently start knitting? I sold things on Etsy for years until my dh got where he needed more of my attention and I have just put most of my sewing, etc. on hold. But, I am going to be doing it again. Wish I could get away long enough to take a knitting class. I crochet, but never knew how to knit.
You might want to consider doing mother/daughter matching scraves for Christmas gifts. I use to do matching crocheted hats for mother/daughters. Also, you could offer "school colors" special order on your site for scraves. Hope you don't mind me giving you suggestions. Looks like you have got yourself a good site going. Good Luck.
Joan, I certainly do empathize with you; we all do. Oh yes, time for yourself is such good advice. But when your lo is as needy as a toddler and just as demanding, it is very hard, indeed, to focus any meaningful time on yourself. My dh still can stay alone and, I'm afraid, I do leave him as often as I dare and revel in being alone. But, I always know that he is at home, alone, waiting for me to come back to him and the responsibility of him is almost overwhelming.
Tonight, I made dinner and then called our younger daughter who had called earlier and tried to weasel out of her time with her dad this weekend so I can go to my sewing class. We ended up talking for maybe 1/2 hour and, sure enough, as soon as I returned to the living room, tv, and dh, he was annoyed that I had been talking on the phone (as he always is). Instead of being patient and understanding and ignoring his whiny attitude, I threw the headphones across the room and told him that I was sick and tired of his constant whining and monitoring of my phone calls. This, of course sparked a heated argument in which I (the adult in the conversation) stomped into the bedroom to be alone. I tell you, I don't even feel remorse, I feel liberated that I, for once, am not cowtowing to my juvenile husband (of course, I am the juvenile tonight, but I don't care).
So, there you have it, you all know my dark secret. I shouldn't feel this good about being so bad - should I?