After a very hectic 3 days, my company has left, and I am somewhat back to work. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It may not be pretty, but it is honest. I am figuring that many of you feel the same as I do, but others do not. I'd like to hear from all sides.
Joan its sounding as though having both Dad and Sid together isnt what you expected as far as lessening the workload. both are demanding and needy which in turn is stressing your day even more than before. i think you are right to make the decision to get things done on your time and availability or you will be one of the dementiawoman soon yourself! its hats off to those of you caring for an aging parent along with a spouse. divvi
Whew! I vote with you: do everything on your time unless it's an emergency. Maybe an Ipod stuck in your ear w/fav tunes would help. I can't complain when caregivers in similar situations as yours or whose spouse is farther down the hill than mine are truckin' on. Monday I could/did cry at any and everything--even looking a beautiful flowers. Had to suck it up when hb was around tho'. Today I'm okay. "No, we are not going to town today; you have no appointments; we have no need to go." HB: I need to go (again.) Not gonna happen even if I did say when he lost his license I'd take him when & where he wanted to go. I tho't they'd be reasonable requests...oh so naive and wrong. lol
Zibby, maybe the "wanting to go" will pass soon! It did with my DH. For the last several years he HAD TO GO SOMEWHERE everyday- sometimes more than once. Over the past month or so - not so much. Now I realize it's ME who wants to go anywhere!!!
The sad thing is I can't find the energy to do all the things I have to do before I leave the house. Where did my "wanting to go" go. I always loved going on the spur of the moment and DH didn't like surprises so when I wanted to do something I had to make him think it was his idea. I swear this really happened. Several years ago on our anniversary I wanted to make a trip and he was not cooperating so I made a list of places to go and I put Vinemont which is 3 miles north of us on the list. He looked at it and commented Vinemont sounds good. Two days later he said "why don't we go to Gatlinburg" so At 12:00 that night I called and made reservations. I could say why don't we go out to eat tonight and he would say "lets wait until next week" so I pulled the old we'll have salmon patties tonight and it worked every time. Somewhere in this post I got off topic. Sorry...
Grace, how far along is your husband at this point? I do worry about you physically being able to handle him (much less climb up and change light bulbs!)
briegull, he is probably stage 6. He is easy going except for all the men that are giving him problems (in the mirrors and on TV) Tried several meds for the delusions and the side effects were worst than the problem. Has no medical problems and is in better physical shape than I am, eats well and is continent in the daytime if someone can direct him to the bathroom. His memory is flat out gone, knows me but doesn't know me if that makes sense. Their are others here that have more problems than me but my chronic pains are making life hard. Climbing up and changing bulbs are the easy things. It is this constant confinement that is killing me. Four hours a week to buy groceries and take care of business is not respite. That's enough whining today. Pull up your big girl panties and get on with life. Hey, was this more than you wanted to know?
I don't think Bama is whining. I don't think I was whining in my blog. Maybe I was. At this point, I honestly don't care if I am or not. I just feel totally surrounded by dementia, illness, and no one who can hold a conversation and remember what was said. I need a vacation from Dementia Land. I feel like screaming - Get me the Hell out of here -at least for a little while. I am concerned that by the time I am out of Dementia Land, I'll be eligible to be a resident.
when my sister was caring for her husband, she broke the 2 weeks up for respite from the VA into 1 week every six months. She said a week wasn't enough but having it to look forward to every six months was some consolation. The nurses would tell her to not even come visit that week - he would be fine. He didn't understand but he was fine. True he didn't have AD, but after his stroke he did have confusion and short term memory problems.
Joan and others, I wish you had that option where you could take a week and avoid everything to do with dementia.
Oh, Joan, I am going mad just reading what you wrote. Isn't there anyone--or any two--friends, relatives, fairy-godmothers, anyone to give you a week-end off? Can your father pay for someone--or two? You need two, and the dementiamen will just have to suck it up before they suck you dry. Is the sun out, are you near clean beaches? Other than understand and commiserate, (and I don't really undertand, never had this load to carry) can't do much more. But please try to get out. You can do it, they will survive. We give you permission. Don't want to see you handcuffed in bare feet like that poor man who shot up his house. Take care of Joan, she's important, too.
My sister was here visiting for 3 days, and she "suggested" - yelled at me and demanded is more like it - that when Sid goes on his "outings", I leave the house and get away by myself - to the beach or shopping or something just for me.
I think it was because I had so much help while she and her family were here that it suddenly hit me how much help I do need, and how I really am surrounded by the demented, ill, and infirm, and absolutely have to get out of that world much more often than I do.
It really was a super visit. I sat and played with my 15 month-old great niece, while my nephew, sister, and brother-in-law did all of the heavy work - lifting wheelchairs into cars, pushing wheelchairs, taking my father back and forth from here to the ALF whenever he asked. And my niece-in-law kept cleaning up the kitchen and dining room.
There are normal people out there in the world. I know there are. I need to commiserate with them. Converse with them. See them.
Joan, if I remember correctly,, you dad does not have dementia. If that is the case, you might have to have a 'heart to heart' and let him know you can not be his caregiver too. He is in the place he is so they can do for him. You want to be just his daughter cause you have all your can handle with Sid. (something to that effect) You did not bring him to Florida so you could have another person to take care of.
You have a wise & generous sister. Find a group--political, religious, artistic, travel, crafts, sports, dance, anything that is NOT AD or otherwise related to such things. Join & go to their meetings, talk to someone about something else. My sister goes to the senior center once a week for poitical discussions. She never participates, she's getting senile, but she tells me about it, it gets her out of the house--she's alone--but you must have some other interests--or think outside the box, learn bridge or cribbage or chess, something. You have a sharp mind and high energy level. Work out something to keep it all together one or two meetings a week. It couldn't hurt!
Vickie, I hear you about wanting to go somewhere. For us it was out to lunch or dinner at the drop of a hat. So I would negociate (sp I am too tired to care) and that worked out well. Now I am the one who plans the outings...I mix it in with a doctor appointment and then a lunch date at the Red Lobster. This is a recent change I would say with in this last month.
Bama, the man in the mirror thing reminds me of Michael Jackson's song about the Man in the Mirror..he wrote that after he had all those surgeries and no longer really recognized himself. How sad. And by the way. you are not whining..you are stating what is too often the case for out respite..respite for me is getting out to run those errands..sad huh.
Joan, you know what? I have no patience with my DH's "friends" who ask me " How is he doing?" I have got to the point that I just say " Why don't you go visit with him and decide for yourself." Oh they don't ask how I am managing..guess that is what being 20 years younger gets you. You aren't whining either.
I get frustrated too at the things that are now missing from our old everyday routines..like his going over the grocery ads and nearly driving me nuts for a couple years with the spur of the moment " what do you need from the store" It was every day..I remember saying " Go look in the pantry, you can figure that out as well as I can" I would get annoyed..now he doesn't even look at those ads and how I wish he could do those errands. The problem we all have and at one point could not even identify the root of is that as this disease creeps into our homes ever so slowly, we start to become fragmented.. where oncec we were organized and got things done, actually got something all the way finished now we find ourselves staring at half done jobs because of all the interruptions. I now that has been m problem for the last 5 years and only when we got the DX did I figure that out.
Commiserations, Joan, and good luck with your wise resolve to do things on your own time. I still have a dh who wants to do it NOW but WHAT he wants to do has changed.
A year ago he wanted -- all the time -- to go out for a meal. I used to have to bribe him to stay home by making something he really liked. I didn't know how lucky I was.
Now he doesn't want to go out for meals. Not at all. Now, he is content in the morning to stay home, but by midafternoon he wants me to take him HOME-- in my car. I can sometimes use his desire to leave the house as a pretext to get him somewhere we need to go anyway -- and sometimes to a restaurant. But he doesn't like it if he has to wait for food, so it's less fun that it used to be. If I get him onto a bike there is the constant danger that he will decide that HOME or sometimes JEANETTE is in THAT direction, and off he goes. So in this warm weather I'm not too eager to take this risk.
On day care days this starts about 5 minutes after he gets home, so these days are less restful for me than they used to be.
Things are always changing. Hopefully this too will pass.
Mimi, I can really identify what you said about half-finished jobs because of constant interruptions. It's gotten to the point that I sit playing computer games way more than I should, because I know I won't get much done even if I try. It's frustrating!
Well I took him out to supper tonight -- rode our bikes to the other end of the village and sat outdoors there -- and actually had a nice relaxing time. When we got home he had forgotten all about needing to go home.
Had something of an accident just when we got home because we both forgot to get him to the toilet at the restaurant, but then was wiling to take a shower (I watched through the door to make sure he was soaping in strategic places) and went to bed early. I was afraid he would pop back up again but he seems to have fallen asleep.
Joan, I'm having those constant same questions now, too, but, fortunately, I don't have TWO people demanding my attention. I know what you mean, though, about having a conversation with someone other than a person who has dementia. What I would really like is to talk with someone who has interests similar to mine. This is difficult to find because I can't seem to find someone who likes the books I like or the movies I like, someone who would like to go to museums and such. This wouldn't have to be often, maybe once a month or so. It would be wonderful to have something to look forward to.
JeanetteB - I sympathize with you. I'm running into the same problem with my husband. Never wants to go anywhere anymore, moans and groans when he has to go to the doctor or anywhere else. But, when we're out, he enjoys himself, talking with people and seems happy. But, what I go through before we leave the house is unbelievable. His appt. could be at 1:30 in the afternoon. I get him up and 8:30 or 9. By the time we leave at 12:30, my pulse is racing and I feel like my head is going to explode, because he is still not ready! He is able to dress himself and shower by himself, so helping him is not in the cards; that makes him angry. What he says is, "Don't worry. Don't speed. The doctor will wait for us!" He really believes this.
The above happened today. Just writing about it makes by neck muscles tighten up. But, afterwards, we did have a pretty nice afternoon. He even went out to dinner with me!
Joan- Being a caregiver to a spouse is indeed a challenge, and taxes the strength that we have to the limit. But Being a caregiver to another person is even more challenging, and a third person impossible. I understand the stress that you are under, but as one who is caring for my dw, my mom, and my 87 yr old friend, and still working full time, I find it hard to express sympathy for you. I must say that it is impossible to do it alone....You must have a support team, because you cannot be in 2 places at the same time. I have been very blessed that all 3 of my charges have not needed care at the same time...If you remember when my friend was baker-acted, and my mom had problems, I learned to delegate, beg, cry, scream, threaten, promise, compromise, and plea bargain. If I cannot handle someone, I have a brother, a daughter, and a son who can fill in at a minutes notice... During my crisis, I hired my son to take care of my friend every day (yeah paychecks work fine), my brother took care of my mom (no paycheck, except for a payback promise), and my daughter and I took turns with my dw. Somehow, I managed to get everything done, but it was not easy. I often pictured that if I could put all 3 together under the same roof, that caregiving would be easier...but I soon discovered that multiple personalities and ailments do not mix well together. One thing that I have learned is that you are not supposed to do everything for a person. It is ok to only do the best you can...If someone has no arms or legs, then teach them that they have to crawl with their tongue if necessary...Let them do as much as they can, and try to let them handle as much as they can. It is really hard to watch someone struggling, but it is good for them. My dw can no longer even fold a bath towel, but I give her the pile, and she does the best she can...(do towels really have to be folded nice and neat?? I also try to let her sort the silverware from the dishwasher...do the knives and spoons really have to go in a separate tray?? I have learned to lower my expectations.... Also, I often get criticized for leaving my dw alone during the day when I try to work....OH, it would be nice to hire someone to babysit, but when the income is limited, it is really not an option. Yes, she might get into touble...heck, I might get into trouble for letting her get into trouble... I find that worrying about what MIGHT happen serves no purpose...I only worry about what DOES happen, and handle that as quickly and efficiently as I can. My advice to you Joan is to act as the caregiver...That does not mean that you have to do everything yourself... DELEGATE...ask others to make appts, phone calls, arrangements....When someone offers to help me, I immediately accept. I ask them to schedule appts, or to pick up items at the store, or to deal with problems that are too time consuming to me. It is amazing that those little things help so much... The stress you are under is apparent, and it need not be that way. The best thing I ever did was to appoint a caregiver to the caregiver....I asked my brother, my mom, and a friend if they would take on the responsibility of keeping me sane and happy. All 3 accepted, and it is their job to intervene when they see I am overworked, over stressed, and not coping well. Sometimes, it can be as simple as offering an hour of respite, running errands, cheering me up, encouraging me, or letting me know that they are there. Go find yourself a caretaker's caretaker..
Phranque--You are right on. As a caregiver you do the best you can and that's good enough. I feel as though I've become a nag when I repeatedly advise getting help involved early. Get yourLO used to having help in before they require much hands on care. Frankly, I don't believe the caregiver has any business tying up their time doing dishes, running laundry, mopping floors, or the like. Anyone can do those things. Only the caregiver can set up, go to, and follow through on medcal care appointments, legal matters, etc. We have to be the ones most involved directly in directing our LOs care. I firmly believe in thinking like: when house cleaning--"if I can't see it; it's not there" refering to dust bunnies, tops of riges, etc. As long as the right clothes make it into the right drawers in smooth order,it doesn't matter how they're folded to get there. The caregiver cannot make everything perfct for their LO. Life includes delays and choices and bumps in the road. Our job is to help them get through those things. Its not our job to make their way totally smooth and easy. We have enough to do just to get them through, the way things are.
Last night while I was at my in-laws house doing mom's exercises (she needs three a day due to double knee replacement a month ago), the power went out. It was out for 20 minutes. Dad is on oxygen and the machine alarm came on. Mom started crying and yelling, OMG, OMG. I set dad up with his portable and turned the machine to off. That shut off the alarm. When the power came back on, I got him back on the machine and put a new bottle on the portable in case it went off again. Mom is dad's caregiver and dad has had diagnosed demential for 30 years. Probably FTD. Same situation as I am having with DH, Dad is 85 and she is 78. She has latched on to me "caregiver" and I handle all of their medicine set up and coordinate her exercises. She hasn't got all of her senses back following the surgery. We are hoping it is the medicine that she is on and not a perminant thing. Carosi, you are right. I work full time, and spend probably two hours a day on the phone and at the house coordinating, setting up pills, planning the next day, checking the current day (we all keep a notebook). Yesterday, she got her morning meds twice. She took them at 8:45 and then SIL gave them to her at 10:30. This was scarry. DH and I have been spending the night so we are there to get them breakfast and Mom her meds. Last night and the night before were the first nights that we didn't stay and her medicine got goofed up. Mom won't agree to help in and so several family members (of various competency levels) are helping.
I often feel it's falling on deaf ears when I tell CG's to get respite and help, and I know that there are those who truly cannot get that because of where they live, finances, no family or uncaring family, etc. Sometime getting the 'right' help is more trouble than it's worth. I know when people made suggestions to me, I couldn't just jump up and do it, so I don't want to nag, make people defensive, but I continue to suggest, gently, but Phranque is also right, sometimes just put it out there. Most often we make our own problems and then guilt often keeps us from doing what is best for ourselves and our LO as well. Knock off the guilt, it's a terribly destructive emotion. I don't do guilt! It takes practice, but keep saying that until it becomes a reality.
The internet is full of articles like part of the one below. CG's of dementia spouses are SIX TIMES more likely to get dementia than those CGing for someone w/o dementia. OK - so I'm nagging.
In the new study, the researchers assessed the mental status of 1,221 Utah couples who had agreed to be part of a community-wide health study that started in 1995. The men averaged age 76 and the women 73 at that point, and 95 percent had been married for more than 20 years. Researchers tracked these couples’ mental status with up to four exams over the next decade with a median followup of 3.3 years. No participants in this analysis had dementia at the start.
During the followup years, 229 people found themselves caring for a spouse with dementia. The caregivers were six times more likely to develop dementia themselves compared with people whose spouses did not develop dementia. The researchers accounted for differences between the couples in age, education, socioeconomic status and the presence of variants in the APOE gene that can increase risk of Alzheimer’s disease.
While this is the first study to look at actual dementia risk in spousal caregivers, other research has documented an array of physical and mental problems associated with caregiving. These include depression, sleep problems, less exercise and unhealthy diet, says Peter Vitaliano, a psychologist at the University of Washington School of Medicine in Seattle, writing in the same issue of the Journal of the American Geriatrics Society. All these conditions may be risk factors for dementia, he notes.
In the new study, the authors point out that some of the increased risk of dementia in caregivers may be due to shared environment. The couples had been married on average for 49 years upon enrollment in the study. But what those shared environmental risk factors might be remains unknown.
One other possible contributor to this dementia risk could be the tendency of people who are prone to distress or mental illness to find and marry one other, Rabins says.
Bruce McEwen, a neuroscientist at Rockefeller University in New York City, says that in the future researchers might do well to investigate whether caregiver spouses who have less social support — or who are just more isolated — might be at the most risk.
Thanks for all of your responses. Maybe the blog sounded like I was complaining about caregiver burnout, but my main point was that I am surrounded by people with dementia and other infirmities, and I want to climb out of this dementia hole and live among the "normals" for awhile. When Sid's fractured foot heals, I may just get someone here to look after him, and take off for a long weekend with a friend. Margaritaville (sp?) anyone?
joang-----Why wait?---0you'll have to get help in whenever you go. Start now, while he's still sociable. Get him used to more than just you doing for him. It'll be easier for later.
Tomorrow I'm having a conversation about these things with my daughter (we're having brunch!) and we're going to set a day for me to have a respite weekend sometime this summer.
Hi Joan, Bettyhere. Phranque, and everyone. Thought I might chime in for a moment. I am not sure I know what "NORMAL" is anymore. Yes, if anyone is running away, I want to go toooo.
After 2 surgeries within a month - I am not sure who I am anymore, or what is happening. I can not go back to the NH until mid-week. After the bladder surgery on 6/28 - the doctor grounded me for 10 days - no driving, no visiting, no nothing. Can't go to the NH because of different germs. Never heard it put quite that way - but that is what I was told and what was written on my discharge papers. Recovery is going well - maybe I am just impatient, and I do miss visiting almost daily with Ronnie. I seriously doubt he has even missed me, who knows.
My oldest daughter is staying here with me - she is staying until August 25th. Guess she thinks I am going to be a long time healing.
I have just started getting comfortable alone - and now again I am not alone. Oh well, if it isn't one thing, it is another. No I am not complaining, just rambling on.
Joan, sorry to hear about Sid breaking his foot, and you trying to care for two. I couldn't come close to doing that. Good to chat again, will try to stay in touch - or you can, catch me on Facebook almost daily. It is about the only thing I can do. I have lost 11 pounds since I was here last time, but the way I have been eating today I have likely gained it all back.