I have taken care of him quite a few times that required my waiting on him hand and foot . It occurs to me that during his rheumatic fever , kidney stones, broken ribs, etc., I was his total caregiver. Now this happens and that's the end of my life and his. When I had circumstances similar, I had to care for myself and the children. Probably having only 5 or 6 years of life left to me (if I die when I am 84 as my Mother did), I do wonder if I don't deserve and need some joy for a significant time (2 or 3 days). It bugs me that he would not and could not reciprocate if he had a chance. I don't feel this way every day, but today it's been on my mind.
You are not alone, especially those of us that have not had the happiest of marriages. If roles were reversed my hb would not take care of me. I know that due to his record over the last 41 years. Like you, mother was never allowed to be sick. Or if she was, no time off.
midwestmn i think its not only deserved but needed that you get a significant time off for some joy in life. we say it over and over that so many of us find ourselves not taking sporadic breaks to help rest and rejuvenate to be able to get thru all the caregiving. it does weigh on the soul that our mates would not care for us if the roles were reversed. but we are the person we are and know we are doing the right thing by them for our own peace of mind. not withstanding how another would act but for ourselves to know our choices are made from our own convictions. i hope you find a way to get those few days of respite soon. it does help to lessen the load. divvi
You absolutely need and deserve respite. If you can afford it, hire someone for a couple of days a week. If you cannot afford it, call the Department of Elder Affairs in your State and find out what services you may qualify for. If he's a Veteran, call the VA. There is help out there - unfortunately it's up to us to track it down. Also call the Alz. Assoc. in your area to find out if there are services available for you.
You are not alone in your thoughts. Most women probably feel the same. Women are almost always the proven caregiver for the children as well as their mate. The younger generation, not so much. You see your male children and even grandchildren doing many of the family and home things that that the men of our generation would never have even thought of doing. This is just part of life and the differences between men and woman and acceptance of genrational chances.
Respite is the solution to lessen the burden we all are experiencing. Please look into getting some help.
No, you are not alone in your thoughts. My kids told me over and over that had our roles been reversed, I would have been in a home a few years into the disease.
You do deserve some joy and rest. The stress of this disease is unending.
I guess our situation is different. During our 58 years of marriage, my wife often took care of me after various surgeries, etc. Now it's payback time, so I'm taking care of her. I have to ask for help for some areas, but my hope is to keep her home for the duration.
marsh, I do believe the men on this board are different from most of the men "of a certain age". My DH is 62, dxd at 58 and although he was a good caregiver when I had my knee/hip replacement surgeries, there was a light at the end of the caregiving tunnel when I'd be up and mobile again. I am not criticizing his caregiving but it was for a very limited amount of time and as soon as I was mobile, he viewed his caregiving job as done.
I doubt he would have had the stamina and the desire to do this emotionally and physically exhausting caregiving with the outcome being death.
KUDOS to the wonderful male cargivers on this board!
I know my wife couldn't have done it for long. She loved me and is a good person but she's just not that strong. She would have gone a long ways for her I believe and I accept that.
A deeper point might be that we all have aspects of this that really get to us whether it's what the children are or aren't doing, our own hurt in a helpless situation trying to find an outlet, our resentment that so much is taken in this horrible way (all humans are entitled to have feelings), fear, withdrawal, depression - there are so many.
A clear parable of this might be saying that we all know "let he who is innocent cast the first stone" which can be transformed to "let those that seek peace drop the first stone".
The hard part when looking inside ourselves is knowing which frustration channels we really do need because we do need outlets - and which of them we would be better off inside letting go and dropping them.
As an example my hate fed on my x-friends (who's behaviour was atrocious) for over a year and I would get really worked up inside. Some time ago I realized I had problems and started going the other way. Instead of allowing the thoughts of them to replay and challenge in my head yet once again, I started shutting it down by saying I don't want this and they were idiots and get rid of them. Now they only have a shadow of their former power over me and maybe for a time I needed them as an outlet.
The one thing I'm certain of is that when we have them with us, don't worry so much about outbursts. Believe it or not you're a human being under terrific strain and boy do you need them sometimes.
Oh God Wolf I opened up the site this morning and lucky I read this thread first. After a night of hardly any sleep, a week of poop duties that I never expected could get so bad, I just blew at him this morning, yelled, and that was even before I had coffee. Crying and sick.
I know Dado (was) a wonderful caring man in his time, I also know, he could not take care of me if the roles were reversed. Because he would not have the capabilities or patience, not just with me but with the Medical system , bills, paperwork etc. Of course it is not his fault.
And how you said it all about friends is also where I am getting, let them go if they are not true blue, look at myself and see what an awesome job I have done so far and know I am a better person than I ever thought I was.
I will now go to my "own" thread to finish. Also Wolf I was wondering how Diane is doing.
Marsh: Like you my role as caregiver is total role reversal. DW had never seen a hospital other than for childbirth for the first 48 years of our marriage. I, other the other hand, felt like I was keeping several orthopedic surgeons kids in college, between knee's, shoulder and back ops. Five years later, I am hoping to be able to keep DW at home for the duration. Even though she's well into stage 6, I've be able to cope, in large part, because I'm one of those fortunate few who have spent their lives married to their best friend.
My husband would have tried to care for me, but he would have done a lousy job--attention deficit disorder and a tendency to be off in his own world. We married 25 years ago when he was 42 and I was 32--first marriage for both of us. Over the last 4 years since he was diagnosed, I haven't found any solutions for resentment, but it has gradually diminished.
DH's first wife had MS. He cared for her at home for many years, then finally had no choice but to place her, where she died a few months later. He was an excellent caregiver to her, but he was really burned out afterwards, so I'm told. I didn't know him then. I think he would try to take care of me if the situation were reversed, but having done it once - I don't know how long he could do it again. We have had a wonderful 38 years of marriage and I don't have any resentment - only at this horrible disease.
I am a very lucky woman in that Sid loves me more than life itself. He tells me so all of the time. He was a wonderful husband and friend. For the short therm, whenever I was laid up with one surgery or another, he was there for me. SHORT TERM.
However, I know his limitations, and lack of patience is definitely one of them. As much as he would want to, he would never be able to handle the repetitious questions, confusion, temper tantrums, anger, and lack of reasoning. I was a highly trained professional who handled these types of behaviors with special needs kids for 25 years, and I almost had a nervous breakdown dealing with his AD behaviors. He has never had any experience in this area, and whenever I showed lack of understanding about something - most often driviing directions or math, he would go ballistic. He couldn't accept that I didn't understand. In his mind, if he understood it, then there was no reason why I couldn't.
When we first moved to Florida 6 years ago, we had two cars, and Sid was driving his. We both had to go to the resistry to register the cars. I had to follow him because I had no idea where to go. I got all mixed up, as usual, and couldn't follow him - we both pulled off of the road and he went nuts on me. Screaming that he told me over and over how to get there and what was wrong with me that I couldn't follow a simple direction. I looked him in the eyes and said, "Welcome to my world - this is what it's like living with YOU!" - Because that was at the beginning of AD when I was just starting to see the repetitious questions, confusions, and temper tantrums. It was right then and there that I knew he would never be able to handle it if the roles were reversed.
Whenever I was 'sick' he'd bring me soup, toast, water, whatever. But again, that was short-term. He'd see that I was well cared for, but to be housebound all day every day--that was not in his DNA. His DNA was get up early, go to work, work late. He'd always take time off work for children's events, he'd bathe them, even diaper, participate and he was always the one who'd remove a splinter, things like that. But past that, I just don't think he'd know where to start. Oh, he'd try to 'fix' me, because he could fix anything, get it working again, analyze the mechanics of it and 'voila' turn to the next problem. Yes, he could and would loving carry me, bathe me, diaper me, but 24/7 for years, I don't think he could arrange himself to be able to do that. He hated to have people in the house, but I think it would probably come to that--he'd hire a woman. But, in fact, I'm just speculating. Thankfully that's one thing I'll never have to know.
Weighing in here..... No my DH woudn't be able to be a 24/7 caregiver for years. He couldn't handle it when I was sick (if the kids were sick he wanted to take them to the doctor right away, but he didn't think that I needed to go to the doctor). It's kinda ironic, years ago I thought about one of us needing to be taken care of & I thought that it would be better if he was the caregiver & I was the person needing the care. I thought that if I was house bound he could take care of me, but still go out & do whatever he wanted. HA! I never thought about something like this. God knew what he was doing in our situation.
I've been caring for DH for so long - since his MS kicked into high gear - that I can't even say if he'd ever have cared for me the way I care for him.
I think my dh would have tried and been very attentive...but, he would have failed because he has no experience in doing such a thing and he was always so hyper just doing daily task that he knew how to do so well. Do it and get it done...NOW. Before the AD I use to tell him he needed to watch me cook so if I got ill he would know how to fix us a meal...he always said....I would just get fast foods. He would be very caring and kind, but he just wouldn't be able to do it. I really believe if I had AD I wouldn't care that I was placed in an ALF or that others cared for me...but, I do think my dh wouldn't want to be placed that is just one of the things that makes this so difficult.
amen Judith. I am going to tell all I know, put me in a home if it ever comes to that. Or, like Chief Dan George in that movie where he goes up the hill to die. And then he doesn't.
I know one thing about placement...the ALF I was planning on using if I placed him will now cost me about $2,000 a month more just because of the decline my dh has had in the past month. They called and told me they had a place for him last Friday and between Friday and today he has changed so much I called them and told them to take him off the list because I wasn't going to make any decisions until he is more stable and I have no idea when that would be. Now...I will be looking at the VA sponsored nursing homes....that is free to us and he needs almost total care (still not incontinent) and is still moble but very unsteady...those things have to be next to go.
I would say in an interview...don't ask me what my dh can't do because the list is too long...just let me tell you the 3 or 4 things he can do.
My DH was like marsh, ol don, wolf. marty and some of the other men on this site. I'm sure he would have taken care of me if the roles were reversed. He would probably have to hire some help with things he didn't know how to do but I think he would have been right there for me. I've seen him care for his mother and for me when I've been sick. That said, though, the state he's in right now, he doesn't even seem to know if I need help or know what to do if I'm sick. When I had surgery some time ago, I had to take care of myself...almost passed out in the hall getting to the kitchen to get my meds. If he was himself, he would never let this happen.
I'm sure my DH would never take care of me either. He was an excellent provider, but emotionally unavailable. 22 years ago our third child was stillborn after being diagnosed with a very severe heart condition and Down Syndrome -- DH was with me in the hospital for the delivery (she had already died in me), but in the weeks that followed it was back to life as usual for him. He wouldn't even go to the cemetery with me because he said he couldn't afford to become emotional and fall apart since he had to continue working (he had his own business). I do think though that DH would probably hire someone to care for me or place me somewhere. He just wouldn't be a hands on caregiver that's for sure. He didn't even change our children's diapers. Sorry to sound resentful or bitter, I'm actually better with that these days -- just sad that his life is gradually diminishing and mine along with it.
Thank God that we can vent on this page!!!!!!!!!! And that nothing is taboo. Last night when I initiated this subject I had really had it and needed to vent. After I prayed about it' I received some comfort and insight. Something about the good that I would do-that I don't do. And that which I would not do, that I do. I do know that I would defend my DH to my dieing breath. Me thinks that I do protest too much, and don't really know my real feelings about the situation. It helps so much to hear from the rest of you. It's real bonus. Whether he would or could care for me is almost beside the point. I will care for him!
My dh would take care of me or see that I was cared for. He was great with our kids and when I had a job that kept me late he would have our meal ready when I got home. He certainly wouldn't have let the yard go as I have. The fence would not be falling down and every flower bed full of weeds. Our bank account would balance to the penny and all bills would be paid. He wouldn't whine and complain to anyone who would listen about lack of sleep and constant answering the same question over and over. But it didn't happen that way so as the saying goes "it is what it is".
Dazed, Lynn was the same way. He would be right here posting along with Marsh. I do know he would have been able to handle it because he was my caregiver for several years when I was diagnosed with Trigeminal Neuralgia in 99. He worked full time, but came home for lunch to give me my medications and to make me lunch. He would then come home after working all day and do ALL the housework, cook the meal and take care of me. Never once did he lose his temper, he was always kind and loving. He was an awesome caregiver! I always say I learned from the best ♥
Something’s you just know… and I know if the roles were reversed, Lynn never would have placed me a nursing home. That guilt use to eat at me, but I really had no choice. He would understand and forgive me.
I had an interesting experience this evening relating to this topic. At dinner we were supposed to sit with another couple here at the retirement Inn. The wife, who is in the early stages of Alzheimer's, decided she was "too sick" to come to dinner, so her husband had her meal sent up to her. He then spent most of the meal talking about how he couldn't deal with his wife's anger, etc. and was planning to move out to a rental house nearby, leaving her alone in their apartment. I asked if she could be left alone and he said "no", and that "they" would soon move her to assisted living. And he also stressed that they had a great marriage. I'm afraid I wasn't too sympathetic with him.
Reading all the posts, the key words with regard to our LO taking care of us in a similar situation and the success level falls on END IN SIGHT of the illness we the well one now may have had...My DH would be willing but.......I suppose he would be more open to outsiders in the house...I loathe the idea of strangers in my house after the hell we endured with my parents situation..I would feel I needed to be there to prevent theft and abuse.