This comment was inspired by Anchor20's discussion called "Thank you all for your sharing."
Anchor said that he wanted to "fix" his wife's problems. I've read that when there are problems men are more likely than women to attempt to fix them. Like Anchor, I can't believe this is happening, but I've never thought about fixing my husband. I've mostly thought about what kind of job I will do caring for him as he goes through the different stages if I will even able to do it.
What about the rest of you? Is it true that men are apt to try to or want to "fix" their spouses? I wish there were a way to fix them.
I think you're right; women are more likely to try to accommodate their spouses - but also other people.
But the caring men on this list just blow me away!! I cannot imagine that if roles were reversed my dear sweet clueless husband would have been able to tend me at all!!
Mine would have been clueless also. He pretty much lived in his own little world and once he was inside the house it never even entered his mind he should help clean, cook or whatever. My son is of the same inclination. Sad, but I think we mothers were to blame. Should have trained them to help inside as well as outside especially since most women work outside the home now.
My husband has taken care of me through a high-risk pregnancy when I had to stay in bed for four month (and we had a son in kindergarten) and through two separate knee replacements and two broken shoulders. I know he would try really hard. I'm not sure how well he would hang in for the long term. He too has a tendency to want to fix things. He kept calling the doctor to ask for more pain medicine after the knee surgery and broken shoulders. Fortunately, I had a sensible doctor or I would have been addicted to Vicodin!
I think most of the men on this list are, well wait, let me just speak for myself... I'm clueless.
I just want to do all that I can to care for my wife. The caring part isn't hard, it's remembering all the little things that need to get done that are hard.
My challenge now is that work has asked me to come into the office a couple days a week,where in the past 6 months I've been able to work from home and have only had to go for meetings. ( I work in the IT field. I do not need to be in a physical location to do my job. Just a computer and an internet connection.)
So now, I have to get some help for my wife when I'm in the office. I am concerned for her quality of life more then anything. She gets upset even when she is with her family, when they are with her when I'm at work. Her daughter has not as of yet, stayed with her when I'm at work. I know that my wife will not be happy with a home care helper, once I find one who is good. So yes, a man wants to fix things. We just can't accept that something cannot be fixed. We feel we are just too stupid, and we can't figure out how to fix it.
And we never ask for directions.
At this point I am willing to quit my job so that I can stay with my wife. I want her to be happy and she only seems to be happy when she's with me. Still trying to figure out how to fix this one!
I'm sure all of the guys here on the forum want to do the best they can for their DW. We as family has been faced with some major care decisions in the last couple of weeks. We were told DW needed 24 hour care, our first thought was that we would have to place her in a nursing facility. I sure you regular visitors remember those recent posts of mine about NH placement.
But where there is a will there is way. Her daughter (a nurse) and I have had many conversations about how to handle the situation. We have decided to bring her home, we have located and hired a retired lady who is interested in staying with her during the day for a very reasonable fee. She will be much happier at home than in a nursing facility. Rearranging some of the rooms in the house has been a top priority the last few days. We purchased a low twin bed for her room and moved her big high bed into one of the smaller bedrooms. A high commode seat and handles were added to the bathroom, we removed the leaf out of the dining room table to allow better access to the outside doors in the room. We will be getting a wheelchair and a walker, some home health care services will be provided.
I will be the overnight caregiver with assistance and some respite provided by her daughter and two grown grandaughters. We have agreed that we have to give this a try, if this doesnt work we will know we have done all we can physically do for her. We all love her and don't want see her placed in a nursing facility unless it is absolutely necessary. DW has VaD/AD and has began declining rapidly. I know this isn't going to be easy, but we all have a positive attitude and are going to try our best to make it work.
Wow Jimmy! Bless you and your family. The plans you have made sound so perfect for the situaiton, so loving and caring!!! Let us know how it all works out as the very thought of how much love is surrounding your DW brings happy tears to my eyes. I hope that my DH feels the same from me now and in the future.
Jimmy i think your plan will work beautifully - its a well rounded out plan and DW will be ever so grateful to have the chance to give it one more shot -you have a good family support in place that will make it much easier. good work. divvi
me too, i think all you guys are stepping up to the plate with dignity and are some of the best caregivers bar none, male or female. my repects, men to tend to be 'fixers' and women ' nurturers'
I agree with you Janet. We can take care of our wives. The big differance is that in your case your husband didn't need to fix you. There were doctors and hospitals on the team that knew how to fix you. I took care of my first wife for 8 years when she had Hodgkins Disease. But it wasn't the same thing. I knew that she would recover. I didn't need to fix her I just had to make sure she was comfortable, and ensure she had everything she needed. There was light at the end of the tunnel.
In that respect I take care of Kathryn too. I watch over her and make sure she has anything she wants or needs. I put a card on her pillow case every Friday and have flowers delivered to her on the 25th of every month. On the weekends we take little day trips in the car because she really enjoys them. I can provide for her and make her happy no problem. The problem is there is no light at the end of the tunnel. The doctors haven't fixed her and I know that this disease will continue to progress and that she will go though some really hard times unless something else claims her first. The problem is for most men, me included, that we don't want our wives to experience what lays ahead. It is our job to protect you from harm. Lord know I would trade places with Kathryn in the blink of an eye. And I’m sure you ladies would too. I guess men just see it from a different perspective.
By the way Guy. I have a Garmin (same as a Tom Tom). Wish I had one for this.
I repeat what I said elsewhere. Kathryn is very lucky to be married to you. You are incredible. And I know my husband would be the same way. He would not want anything to be wrong with me and would want me to have what I wanted and needed. That's why he kept calling for more pain medicine. He didn't want me to be in pain.
Having had two careers, systems analyst and CPA, neither of which have anything to do with health care, I know I can't fix my DW.....I just see that she gets any necessary medical professional help. I try to recognize things like a UTI, dehydration, etc., or any other condition that may require a trip to the ER or call to 911.
I spent two years trying to "Fix" my husband. I found ways to fix several other severe health problems he had endured before and I took him to Mayo, Duke and the Houston Medical Center for complete work ups and tests. Early on, doctors thought he had Parkinson's because of his falls. One of the hardest things I had to accept in my entire life was that nothing I could ever do was "fix Alzheimer's". I will remember that day in his Neurologist's office when we received the diagnosis... and how it sounded as if a freight train was running through my head...and the tears couldin't stop streaming down my face. His children sat in the same room at that time (because the doctor wanted to explain to them the APoE4 gene, and not a one shed a tear or leaned over to comfort me. One left the doctor's office immediately to catch a plane back to CA, and the others have never returned to H. to see their father. If I wrote this story in book form, publishers would insist it was FICTION. If ONLY it was.
lmohr said: "He pretty much lived in his own little world and once he was inside the house it never even entered his mind he should help clean, cook or whatever." I'm afraid I was pretty much the same way. Since my wife did not work outside the home (and that's plenty of work for anyone) taking care of the house, cooking, etc. were her job, while I earned the money and did the heavy work outside. She enjoyed the gardening after I prepared things for her. After she developed AD and it became obvious that I would have to take over her jobs I started trying to learn. I've never been any good at housecleaning so we hired a cleaning woman (who did windows!!!). I subscribed to "Cooking for 2" to get ideas on how to cook meals. Fortunately, I have been able to take over one job at a time as she got progressively worse, so I didn't have to learn everything at once. Now she does nothing, just watches me as I do the work, or else sleeps in her chair. Sure, I would like to "fix" everything, but I know this is not possible. Living where we do in Maine I could not get her in any drug trials. I just have to say that I have been very fortunate in that she has not shown any anger or violence, almost always does what I ask, and frequently gives me a hug and tells me that she loves me. Also, our family has been very supportive. Her sister has taken care of her twice when I had to be away for 3 days. Our kids (2 girls and 1 boy) do their best, but they all live a long distance away. They will all be here this summer. Even our friends have tended to stick by us, even those we just met recently. I don't know how I would manage with some of the problems several of you mention - rage, poop, family problems, etc.
GuitarGuy-- The dilemma of arranging care so you can be at work a couple days a week, can be hard, but can be done. Doing it now, for, say 2 days a week, and getting her used to it, will also set the stage for later on when you may need to expand the help you have to have. Consider a day program for her to go to and enlist her "help" going so you can go to work--it's her "job. Otherwise get in-home help to be with her, but also do in-home care like laundry, dishes, etc. Just because you are able to do such chores doesn't mean you should be doing them--there are more important things on your plate. She may not be happy about such changes, or you being away from her, but she will adjust. It is hard to leave them at first--just like sending a kindergartner to school, but you both need to do this. She should be more adaptable when other changes need to happen. And you need to go to work and have a break from24/7 cargiving.
This is another step in taking care of you so you can take care of her.
Am I at the right place? I'm thinking I should move to a site that is for stroke or other brain injury situations. My LO is not ambulatory, cannot be understood 90% of the time, and has to be fed and changed, whereas most of your problems seem to be related (at least in all but the latest stages) to dealing with your LO that can walk and go places, shower, eat, and communicate. I don't know.
Just saw this post!!! I use to be a fixer but now my honey due lists are from me and not the same when they were from LO. I have become very lethargic and just have trouble getting any projects finished. I do try to keep Carol as happy as I can. We do things she likes like eating out, driving around, visiting GK's . But Im not very good at housework. With AD, I used to pray for a cure, but now pray for a happy life as posible. bill
TexasJoe you are at the right place. Just happens you just tuned it after you are in the late-late stage of your DW disease. There are many on here in the same place as you right now and there are many on here in early stages and still driving. And then there are the in-between. I fall in the inbetween soon to be in late stages. I hope I can skip the late stages and he will go before he forgets me, the kids and everybody else. Sometimes they do and sometimes don't. My Dh does not drive, is not incontinent, feeds himself, shower himself and communicate fairly well. I am giving him 1 T. MCT oil a day and it has helped some in various ways and I would recommend you give it a try but slowly at first. Divvi just does 1 t. coconut oil. Good Luck and hang in there.
bille: I also have become very lethargic and have trouble getting things finished. My life revolves around my DH.
TexasJoe...stay right here.....I took care of my husband who was in bed unable to move for the last five years of his life. He had to be changed, fed, etc....all he could do was eat, sleep, poop and pee....so I know what you are dealing with.
In some ways this late stage is easier to deal with than the roaming, pacing, raging, angry part of the journey...or at least it was for me.
Thank you for your comments, but that is what I mean. DW is not late stage ALZ, but has brain damage due to malignant tumor and radiation 26 years ago. 11 years ago she fell, hit her head on the slab floor, and has been in a wheelchair ever since. 5 years ago she had a seizure that kind of finished the job of her needing to be fed, bathed, dressed, etc. In other words, she can't do anything by herself except partially stand up so I can do a transfer from the bed to the wheelchair, then to the couch, or the car. I probably have to lift about 50% of her weight to do that. I don't know how long she will last this way, maybe 10 more years, maybe not, depending on how her brain continues to decline, or heart reacts to literally no exercise for years. So that is why I asked if I should stay here and/or find another site particular to her situation. All I know is that it is lonely without somebody to talk with. Watching TV only shows how life used to be and how much you wish you could be like that again.
TexasJoe - I am so sorry. My opinion is it is up to you. If you feel comfortable here we welcome you. Sounds like you have a lot to deal with. You obviously have some concerns in common with us and others not in common with us. It is important you find a place you are comfortable and able to vent. While you are on this site you might also want to check out some other sites for brain tumor/damage etc. There are lots of message and support boards for just about any topic you might name. Personally, I have never searched for your topic. Good Luck
She is 72, as am I. She also has dementia (just thinks I am some nice man who takes care of her), which is why I thought this site would be good....and it is, except that I don't feel I have much to offer any of you in terms of support or advice. Just opinions based on the last 26 years of a somewhat crappy life...the first 20 were great, and I would give my left arm to be able to go back to those early years of our marriage.
Ladies, have you ever had a problem & wanted to run it past your husband, just to vent or get it out there & before you know it, he is telling you on how to 'fix it'! Don't tell me how to fix it, just listen! Men seem to be that way, God love 'em. DH could and did fix everything, he was a natural whiz. One time, during a lucid moment, he wanted to know what was wrong with him, 'if I knew,' he said, 'then I could fix it.' How I wish that were true.
Whenever I was sick, he'd bring me soup, toast, whatever I needed, he was very caring that way--should have been a doctor. I know he'd have done his best for me, but men & women are different & viva la difference! Now don't any of you guys go changing.
TexasJoe, I am so sorry for your situation. This is a wonderful site to come to and feel loving arms around you. My DH has ALZ but has done very well - so far, so I don't have much advice to give either - yet. But I have learned so much by reading others posts and now know that when my time comes with my DH, I will have background information; and I can always post my questions and get wonderful advice here. Welcome aboard.
TexasJoe, You are dealing with a spouse who no longer knows who you are. You are responsible for everything your spouse used to do and everything that she used to do for herself. You need to feed, dress, and bathe her. You are lonely. You don't know how long this will last. You had great years, crappy years.
Yup, sounds to me like you belong here. And, all of these things are the same we are dealing with, have dealt with or will have to deal with along this horrible trip.
Sounds to me like we could use your advice on some of these things.
Please, stick around. And, maybe check some other sites also.
TexasJoe, my husband has a non-classic event driven Vascular Dementia. And I'm in the right place.
Your wife has a non-classic event driven Vascular Dementia and you are in the right place too. And we now have two people here who's LOs got dementia from radiation.
I doubt very much if a stroke support group would understand half of the stuff we understand. My husband went to a world class stroke rehab hospital for speech therapy before we got the diagnosis. Most people who have strokes, and get the right therapy, get better. My husband and your wife are not in that place. Neither of them is going to get better.
TexasJoe - don't sell yourself short. You have lots of practical advice to give on basic care. Your wife is so blessed to have you hanging in there for the last 26 years. Its has only been 4 years since my DH's diagnosis and he is rapidly going downhill. As you are a cross between lots of conditions, you may find that you need multiple site when you are looking for information. You may also find that depending on what is happening with here that at different times, different sites meet your needs better.
Texas Joe, you and I are in a minority here, but we DO have company. My DW of 59+ years has to have hands-on help with just about everything except eating and sleeping -- and needing more help with eating probably won't be long in coming. She's so feeble that she can't even stand at the wash basin to brush her teeth -- she sits in her wheelchair and I hand her a toothbrush with paste already on it, then later water to swish with, then a tupperware container for her to spit in, etc. She's been wearing Depends for about nine months now and has had a few poop incontinence episodes, but pee incontinence is becoming pretty much a daily thing now. Like marsh's wife, mine sleeps most of the time. Normal conversation about things that happened in the past, or things going on around us in the world, are quite beyond her now -- the only thing that really engages her anymore is singing, which she still does as well and enthusiastically as she ever did. And, as others have mentioned, it's a roller coaster ride. Eighteen months ago we were still walking three miles a day, a year ago she was still able to attend Sunday School, and now she hasn't been out of the house for three plus months, and the journey from her bed to the potty in the adjoining bathroom is a tedious shuffle for both of us, repeated several times most nights. Transport over any distance larger than that is by my pushing her in a wheelchair. Back last fall she was experiencing lots of myoclonic jerks and even had three fainting/seizure episodes, which all seemed to stop for awhile after I started her on cinnamon capsules and MCT Fuel/MCT OIL in December. She was doing really well for about a month in late March and early April -- more alert and engaged in things and evidently just feeling better, but in the past couple of weeks she's not done as well. Yesterday morning she had a fainting/seizure episode at the breakfast table that had her unconscious for perhaps fifteen minutes -- the longest yet. I was able to support her in her chair so she didn't fall, and managed to reach the phone to call my son, who had just left for work and was able to return home and help me get her moved over to a recliner, where she started coming around again and was seemingly as good as ever a few minutes later. I tend to place her at about Stage 6c on the chart, but thankfully she's still mellow tempermanent-wise -- no rages/aggression and quite willing to take whatever pills I put in front of her, or whatever. And, in a weird sort of way, I guess we can also be thankful that we don't have to worry about her wandering off or getting into anything, like some of the other folks are having to deal with. Anyhow, welcome aboard -- you're in the right place.
Wow - this thread's moved fast. Jimmy, you sound like in the very best sense you're approaching your situation as a man: analyzing what needs to be done, and doing it.
TexasJoe, we will have a lot to learn from you. Offer advice as well as - of course! - venting!
Guitar Guy, you said "The caring part isn't hard, it's remembering all the little things that need to get done that are hard. "
And I think that MAY be something that has some gender difference. If you can see what needs to be done, you can do it, no problem. But the anticipating, the seeing a need and filling it before it hits you in the face, I think women tend to be better with that. I have three adult kids: two sons, both of whom are good with their dad but the closest one will do exactly what he's asked to do. Not more, because he doesn't see what isn't staring him in the face. Our daughter (who, incidentally, is adopted, so she doesn't have the inheritance thing to worry about as the boys do) is much more able to anticipate needs.
I wonder, Nancy, if the daughters who abandoned your husband weren't scared, scared, that it might happen to them and couldn't bear to be looking it in the face.
Gourdchipper, Yes, our situations sound familiar. With your LO meds, it probably wouldn't be feasible, but mine takes Dilantin (anti-seizure med I guess you know) at just below the theraputic level and does well. But if it gets as low as 3 to 5, (rather than 6 to 8), she at some point thinks I'm trying to poison her, so won't eat. This usually lasts one or two days, and I can get her to eat some things during that time. It is scary to think that if they won't eat or drink for long, you will end up at the ER again. By the way, one of our happy 911 calls a couple of years ago was because the Dilantin level had crept up to 40, a very toxic level, and she was in the hosp. a while for that, then a NH for phys. therapy. After that, we tested the level every week, and now, we still have to do it every month and make small adjustments in the dosage.
TexasJoe, sounds like the caring you are doing for your DW is much like what most of us will see in end stages alzheimers. bedridden, fetal postions, sleeping all day, unable to fend for themselves at all - it may not be the exact disease that brings us together but the symptomolgy of any dementia like disease has the basic same results. we who will more than likely be where you are, will need handson advice when those times are upon us. there are also many war veterans we call them who saw their spouses thru to the end and are now over the pain and misery of caregiving but many suffered the same caregiving issues you are doing now. i hope you find peace here among us, we would love to have you stick around. any input for us starving souls is welcomed! divvi/TX
I posted my thoughts on the "thank you all for sharing" thread...but let me just say....all you guys ROCK!!! Texas Joe, post if you like, read if you like, but whatever you do, keep coming back! As always, there are no rules, so please do what makes you feel comfortable. Personally, I find your posts to be honest and inspirational. (((HUG))) to all!
Hi texasjoe!!! I am 76 and my wife is 72 and in stage #6 but moving into #7. But----one thing you learn here is that the only thing typical about dementia, is that nothing is typical. But the overall problem is very similar. Our wife's are not the same anymore. Conversation has become very difficult, care needs like med's, meals, hygene, etc all seem to vary but I learn something everyday I am here. I also receive great comfort. The ladies are good helpers but the other guys sure seem to have good messages for me too.
gourdchipper, it makes things a lot easier to move a potty chair by the side of the bed. I did for my Mom and I just had to help her to her feet and then pivot around to sit on the potty chair. 1 or 2 steps maybe. I had 2 and kept 1 in her room and 1 in the bathroom.
Thanks for the reminder, Lois -- I had thought some time ago that the time might be coming when a bedside potty chair would be needed, and I expect that time may be at hand. Next trip into town I think I'll stop in the medical specialties store and check them out. Heck, I don't have to wait that long, do I -- I think I'll just see what info I can Google about them....
Attitudes toward caregiving...The winner of this has to be women, because they have the natural ability to nurture, and take care of their loved ones..they have experienced it while raising their children, and now the process is reversing itself. I am learning to be a caregiver, and find that my nurturing skills were non existent. I am a fixer..if anything was broken, I could take it apart, replace what was broken, and got it working...anything that did not survive was junked... I would consent to donating my brain for my wife if I was convinced that it would cure her, even if I had to drool and be incontinent for the rest of my life. But I am concentrating now on making my dw comfortable, healthy, and supplying her needs. (yes that includes her emotional needs too...I have learnt how to cry and that it is ok...I have learnt to hug doctors and nurses who help us on this journey...I too have changed.... I try to maintain hope, despite the hopelessness of the situation. I will not abandon my "better half", and will suceed in learning how to care for her. I am trying to let her live as independently as possible, and yet be there to fill in the lapses in her life and make decisions for her. I am being her knight in shining armor, ready to slay the dragons that surround us...Doctors and hospitals do not like me anymore, because I have become demanding and outspoken about my dw. I do not hesitate to criticize their decisions or evaluations, and remind them that 5 minutes does not accurately portray what is really happening. I will not accept mediocre recommendations, and insist that things be explained to both of us. I also correct staff when I see blantant issues (such as using teeth to cut tape for wounds), and I will become very defensive when my dw cannot speak for herself...I have become a medical terrorist....... Texas Jim, you have found the right website...the experts here are totally honest, unafraid of expressing their feelings and emotions, and cover even taboo subjects that we need to know but are afraid to mention. Stay here and you will find sound advice, comforting words, professional and proven methods, and you can discuss anything ....Joan is the best....
I think the big difference between us as caregivers is as several have said--women nurture--comfort and men fix things and look for solutions. Both are required for the job. That's why we're here. When things breakdown, I have to find someone to deal with it--even if I know what needs doing, i'm not able to manhandle the tools, etc. The guys here do that with no heavy thought about it. However, when it comes to "shall I call it, 'softer things'", they're at sea. Think about the quantity of styles in mens' pants: long, short, casual or dressy. Now think about womens' pants: long and flowing, slim, mid-calf, Bermuda shorts, culottes, short-shorts. And then there's socks and stockings; undergarments, etc.
Another thing, in our society, girls grow up learning to multitask at their mother's side. Men grow up learning to focus and get "the" job done. As caregivers they have to learn multitasking like some people have to learn English--a Second language. That's okay.
We each bring our abilities to this site and throw them out for whom ever needs to grab them, up. The man who asks what to do about hair and makeup, is polishing nurturing skills. The woman who asks if there's a way to disable a machine without damaging it, is learning fix-it skills.
I hate to think where we'd be without this site. In a whole lot more hurt--I bet.
It's not that men are not good at caregiving. It's that men and women are wired differently. Somewhere on these boards I wrote that men are "solution based". Just as pharanqe said - Men see a problem as something to be fixed. When they come up against AD, something that cannot be fixed, they are like fish out of water. They don't know what to do. But in looking for solutions, they find places like this where they can learn all about the disease, and that they are not alone in their emotions. And that it's okay to cry.
If it is really ok for men to cry... then I think I should get the academy award, cause I have always had an amazing talent for it. I never knew it would be put to such good use.
A family member, who is a woman, told me to think with my head and not with my heart. Easy for her to say I thought, she doesn't have one. A heart that is.
I agree with Phranqe. He pretty much hit the nail on the head for me. I'm an organizer. I set goals and then reach them. I see what needs to be done and I find ways to make it happen. But to tell you the truth this scares the you-know-what out of me. Ladies have women things that have to be tended to and I don't have a clue how I am going to tend to them. I think my big problem is I'm afraid I will not be able to do everything that Kathryn will need for me to do for her. I don't have a problem with the nursing home down the road. I understand there will come a day I will not be able to provide the care Kathryn will need as the ALZ progresses thru the different levels. But I want to keep her at home with me for as long as I can. I don't want her to have to go to NH because I wasn't able to provide the level of care I should have been able to.
As Phranqe said, I agaree that we have found the right website..."the experts here are totally honest, unafraid of expressing their feelings and emotions, and cover even taboo subjects that we need to know but are afraid to mention. Stay here and you will find sound advice, comforting words, professional and proven methods, and you can discuss anything"
It will enable me to care better for Kathryn in the future. I believe I will be able to keep Kathryn at home longer because of your willingness to share.