Today's Blog is about being a bossy control freak and how to give up the control and the underlying resentment of always having to be the one to change, when dealing with your AD spouse. I invite you to read it and give me your suggestions. Thank you.
Well, I think I am coming from the opposite side of the fence. Unless I did take control I'd be broke, I'd live in a dump where NOTHING ever got repaired, nobody would eat or clean. Aside from that, people would be taking advantage of my DH over the phone (they still remain pushy and try to shame ME after I take the phone and kindly tell them to never call back again). The more control I grab the more sanity that returns to my life. And I feel I deserve to direct as much of my life as possible because of what AD has taken away.
I pretty much agree with New Realm on this one. My 17 yo daughter and I both chuckle at how often people such as the order taker at the sandwich shop must think we're the pushiest b*****s they've ever met as we order for Jeff when he misunderstands what they're asking, or take the change when they hand it back. That certainly comes across as well when I take over phone calls. Oh well. Joan, in your blog you're expressing frustration over his reluctance/inability to adhere to a timetable with tasks, but there again my issues seem to be slightly different. Though my husband may seem almost normal in casual conversation, his worst deficits involve performing almost any kind of task, so he really can't do much at all, on my time table or his. If he does pull the garbage can and recycling bin back from the curb, that's lovely, and one thing I don't have to do, but it's not as if I have another task I'm hoping he'll accomplish because the truth is he just can't accomplish much so I don't expect anything. The only real frustration comes when we have to go somewhere and I didn't prompt him to start dressing early enough...because that process can slow to a crawl when you most need it to speed up.
Emily, I sure can relate to what you’re saying. Cindy and I eat lunch out everyday at several different local restaurants, something we began several years ago when I retired. Like your Jeff, Cindy is outwardly pretty normal, but her decision making skills are non-existent. Something as simple as which soup to have or what dressing on her salad is a major undertaking, so I just take over. We know most of the servers on a first name basis and you can imagine the stares I get. You know the type…….like this guy is so in charge he can’t even let his wife order!! Cindy has difficulty cutting up her food and I do it for her. One of the servers stared at me and said “Boy, I wish my husband would do that for me” she said it in a smart a** way, so I replied “If you had Alzheimer’s disease like my wife has, I would hope he would do the same”. Did this shut her up!!!!!! DickS
Unfortunately Your DH's ability to have any control over what he does and when he does it will not last forever with this disease. It is his last grasp of autonomy. You will be making all decisions soon enough. The disease is what really has the control. We just do the best we can to keep things running smoothly. You have made comments a few times about heavy duty "happy pills". Relief from an antidepressant does not have to be heavy duty. A low dose can be extremely helpful in combating depression and feelings of hopelessness. I am taking half the dosage of the Zoloft that was prescribed to me and it helps me get through daily life with out tears and negative emotions always at the surface. I've never been a depressed person before but now I do need help with this situational depression. I don't know why you are so afraid of a little boost to your serotonin level.
Dick: I can relate to your dining experience. I also have to cut my wifes food up and have had my share of smart a** comments also. I think your responce was right on. Now when we go out I just try my best not to let the stares or comments get to me. Tony
I agree with you Hildann. I do not seem to need an anti-depressant for now, but if I felt this thing were dragging me lower than I was willing to go, I would find something like zoloft to help me through to be a realistic option.
I'm not against meds when needed, believe me. My PCP gave me a prescription for Xanax (sp?) - it is very low dose - I take it when I'm having a really rough day, and often to wind me down so I can sleep at night. Everyone I know is on heavy doses of big time stuff like Lexipro, and I'd prefer to stay away from that if I can.
I'm pretty sure I can tell the difference between stress and depression. I've had a few days here and there when I didn't want to get out of bed - just wanted to pull the covers over my head, go to sleep, and not face the day - that's depression. But for the most part, I like to get up and tackle the day - it's when the day turns into one AD battle after another that I get STRESSED. So I think I need the Xanax rather than the anti-depressants. For now, anyway. And the walking. That Forest Gump kind of walking and walking and walking seems to go a long way to calming me down.
And thanks everyone for siding with my CONTROL. For me, I think it's a matter of learning when to control and when it's okay to let him go on his own schedule and timetable.
May I be presumptuous and give my view on the difficulties being encountedwhen the caregiver must become the arbitrator on activities and other decisions. I believe that after years of being a couple that have had a pattern of shared decision making in the marriage that the new role of “parent” is very distasteful. The caregiver hasn’t been able to accept in their psyche that their partner is no longer capable to reason rationally and consequently a dichotomy appears. The caregiver knows that he/she must most of the time be the one to have the final responsibility of running the household but is uncomfortable in taking more and more dictatorial actions . They also realize that their Role in the marriage will become more one sided in the relationship until they will be the sole decision maker .
The marriage is no longer a marriage of two equal personalities; the caregiver can and should take the loved one’s wishes and independent actions into any decision but don’t feel guilty or resentful of your role from now on. Your responsibility will not lessen until you can no longer provide the care your spouse needs and you decide to place them in a full time nursing facility. You can then be able to perhaps achieve a measure of contentment and be able to relinquish your burden of directing your spouses daily living.
Naturally, your loved one is holding on fiercely trying to keep the status quo and to retain their autonomy. They are losing bits and pieces of themselves and they don’t know how to keep from disappearing into nothingness. But still they no longer can be trusted to function cognitively as they have in the past . whether you want to or not you are the ‘boss’ in the family now.
At this point in time I know that I am the MOM and he is the five year old child. If left to do things according to his schedule he would probably watch TV or play solitaire on the computer all day. Since we have anger issuses, frequently reminding him to take meds, bathe, dress, or almost anything can be a problem. However he is not able to reason, there is no logic,no sense of time, little or no understanding of responsibilities no considertaion for others. If I don't look after things as best I can we'll have chaos. As you know from previous posts, I've been close to" losing it ". I have not taken meds but have had a glass od wine at the end of the day. I don't think it's control, I think it's survival.
As I read the comments above I see a trend that I have noticed in other postings - there seems to be more of a control issue when the husband has the disease. Also, the men with AD seem to have more problems with anger, verbal abuse, etc. My wife has been totally accepting as I have taken over jobs that she did - cooking, the check book, laundry, etc. When I tell her to do something she either does it quietly, or after saying "Aye, aye, sir, Captain Blye, sir" (a comment she used sometimes before getting AD). I think the men with AD have a harder time giving up what they consider to be the position of head of the household. I'd be interested in others' opinions on this.
Regarding medications, if your PCP is fully aware of the problems he/she can prescribe small doses of the appropriate medication and see if it works. Don't be afraid to take the medication, but be sure to have good control by the PCP. One glass of wine at the end of the day may be OK, but I would worry about this getting out of control. My wife and I have a glass of wine either before dinner or with dinner. This helps maintain something of the past. I would not drink alone or at other times.
I agree with you on the man/woman control issue. Yes, I have seen some women who display anger and temper tantrums, and I have seen some very mild men, but for the most part, it IS the men who have the anger, verbal abuse, and wild temper. I absolutely believe it is related to giving up the control they had on the job and the partnership in control they had at home. They feel as if they are losing every bit of control they ever had in every area of their lives, and they are fighting against it every day in every way. To make matters worse, they can't understand WHY they can't be in control of certain situations.
If I see it escalate in frequency, and to the point of danger, I will talk to the neurologist about putting HIM on meds.
I think you've hit on something with the way you describe the gender differences. Before Robert was placed on medication and had a good turn around, we were going through many of the same things that have been described by others. He was completely incapable of ordering from a menu - even McDonald's. As soon as we were seated at a table, I would start questioning him. what are you hungry for? You had steak last time we ate here - would you like that again? I always had a need for it to be his decision even if I was the one who told the watress when she/he took the order.
Robert would frequently get depressed when I would be leaving for work in the morning and he wasn't. He would say "I promised your father that I would take care of you...." So I do think that men have a sense of letting us down when they get ill. They are supposed to be the bread winners and are supposed to take care of us. They are supposed to be "fix it" men (although Robert's never been really handy - he has always been able to get the work done by someone).
Even now that he's doing so well on medication, he has a hard time with the role reversal. He hates Mondays because that's when me and the kids leave for work/school. He gets very emotional and it's hard on everyone.
I guess it would be easier for the wife affected with AD to allow her husband to take care of her than the other way around.
I try to give my husband the illusion that he is involved as the decision maker, as Leighanne said - I ask him what he wants to eat as soon as we are seated at the various restaurants we go to, so that I know what he wants before the waiter/waitress comes. I have business cards that read "My husband has Alzheimer's. Please be patient with us" and sometimes give the card to them to read. They are very helpful.
We have a glass of wine together each day after I get home from work. This is something we have done for years, and I'm REALLY glad to continue it NOW! :)
When I came home yesterday, my husband wanted to show me an envelope that came in the mail (our tax return check) and even though I nodded, I also tried to ask him about his day. His TOTAL concentration was on the envelope! Until I praised the envelope and expressed joy and took the envelope, he had no other thought! He can only think one dimensionally now, so giving him instructions is virtually impossible.
I try writing down what he used to do each day for him so that he could do the jobs he took such pride in, but he can't seem to concentrate enough to read and do them. Yesterday, two days after it snowed, he had the sprinkler going in the front yard when my daughter got home from work! :)
I have always been something of a control freak, and it's coming in handy now. I just have to realize that to guide him, I have to keep him supplied with DVDs (he loves to watch movies), model kits, etc. and not expect anything from him. It is so hard. He can't listen to me, so my telling him anything just glances off him. That is very frustrating to both of us, so I'm trying to stop doing it. Then, one day out of the blue, he'll be like his old self! A few hours later, he'll be worse again. It is a roller coaster ride right now.
Yes joan...in response to today's blog comments. Yes. I do want someone to take the reins, just for a little while. Sometimes I'm overwhelmed with this urge to be able to just snuggle up to my husband's shoulder and let him be in charge. And I suck it up, take a deep breath, and be tough. Because that's what I be...tough. But if Jeff can't do it maybe someone else can. Not sure who, but it's a fantasy I have.
Joan ... I had to laugh when I read your Bossy Caregiver Spouse blog. I'd be just like your DH -- that durned GPS would have my full attention until I'd conquered it, and THEN I'd do the easy stuff like the gym. (I put off grocery shopping for as long as humanly possible, under any circumstances.)
I am so glad that you picked this subject to discuss. It's something that has really been bothering me. I find that when I become frustrated that my husband can't do the things he used to do, I become bossy, cruel and mean. I hate myself for it. I have really been trying to watch myself lately. I need to learn to let things go and just accept his deficits and embrace what he still can do. Wow, that's difficult.
I don't view what we as caregivers need to do like taking over household finances and chores as a control freak thing at all. In fact I have never thought of it that way. I view those things as part of the caretaking process necessary to protect our family assets and to keep our DH safe. It's just something you have to do. I guess it is taking contro of a situation but it's okay. Me being bossy and cruel is not okay. I am working on that.
The funny thing is when I apologize to my husband for getting frustrated or mean to him, he is so forgiving. It's probably because he doesn't remember. Thanks for listening everyone. Polly
I guess in my case being naturally bossy came easy for us. I knew husband couldnt make menu choices or any real decision-making. like others the waiters would direct their questions to him not knowing what i know and when i would answer they would become more obvious in HIM answering. i thought it funny when they had to wait forever and never got an answer then they would ask me and i would just 'nod' and they seemed to know. esp in the ER recently the nurses ask him about his symptoms. after i said he has dementia.??/ some people just dont get it. they arent able to communicate with any sense anymore. I took over finances/household/investments/just everything concerning us both. it just had to get done and no two ways about it. nobody else was going to step up unless i hired a professional to do it. i found paying myself a weekly 'salary' to care for him here at home has boosted my tolerance and helps me set aside some cash for myself later when needed. i hate to see those 'couple' resorts on tv. it hits home with the reality its not something we will ever enjoy together again...its along desperate, lonely road thankfully many of us are here to pat each other on the backs. Divvi
I am a bossy husband taking care of his AD wife, and that is the way it is! When my wife exclaims about how bossy I am, I laugh and make a joke out of it, and say YES, I sure am or such. Or I try to sound surprised that she would even think of such a thing and get her to laugh at me. And, yes, when we go out to eat I order for her. And, frankly, my dears, I don't care what anyone thinks! dave
Recently my husband found something in a book that he was sure I needed to see. It talked about nagging. The character said that they weren’t nagging, they were “offering directed encouragement”. My husband has since said that he usually notices the directed part, but the “encouragement” is missing!
Seriously, I have to get things going, or nothing would ever get done. I try to do it in a calm, matter-of-fact way, but it’s hard for both of us that I’ve had to pretty much take over everything. I think the fact that he can no longer take care of me is the part of this whole terrible situation that bothers my husband the most. Bless his heart. He worries about me more than he does himself.
Yes girls... That ordering for our wives is much easier for us cause the person taking the order thinks that when a guy orders for his wife he,s being a perfect gentleman ,, but I,m sure they think you gals that want to order for there husbands are being a wench.......... HEHEHEHE........ Just a little thought for the day... wenches
I order for my husband. I start by asking him, generally before we sit down, if he wants Ice Tea to drink. And I take care of that. We look at the menu. I make sure he is on a page that has things he will like and point out one or two things he has enjoyed before and push him to pick.
The current "problem" is starting supper. He gets all upset if I start cooking before he is hungry but can't understand that it takes time to cook the meal. Most of the time I really am making simple things that cook fast, but it would be so much easier on my own physical problems if I could work in short bursts over an hour or two. We have been fighting over that every day now for several months.
If anyone has a suggestion about a workable strategy for that I'd love to hear it.
Would he possibly be more conscious of the meal prep time if you gave him a share in the meal preparation? His mind and body may be preoccupied with that and not too focused on whether he is hungry yet. My DH cracks me up now. He always asks if he can do anything for me..........when I'm almost finished doing everything. I find that he does get kind of excited when I do ask him to do a kitchen task. Only I have to be prepared that he may forget in the middle and not finish the task I requested.
At the moment his only meal prep is to cut up his tomatoes for his salad. He lost the ability to do the rest of it before I realized that he has to continue doing whatever he can do or he won't be able to do it any more.