Follow
Share
Read More
This discussion has been closed for comment. Start a New Discussion.
2 3 4 5 6
I would like to share qith all of you the impressions of a very moving film we saw this afernoon. it is a french one called "Amour" (Love) with the old (today) star Jean Louis Trintignant. It reflects our condition and situation. Sad and moving, lovingly and lonlely... many of our lifes... plenty to think and think and think
(0)
Report

Gonzalez38. . .The little time we do have is probably keeping up the house, cooking, and stealing time on the computer! It's good that all of us can consider each other the friend that we can call and reach out to. My husband's children have abandoned him - never a call or visit. Thru his sister-in-law I found out that his daughter said "I am glad Dad has Peg as his caregiver". . .dah. . .none f you seem to be stepping up for a phone call or visit, who do you think would take care of Dad??? Selfish, self-centered children that are all professionals. Heartless souls that may one day feel something for their father. . . but it will be too late for them to enjoy time with him. I should be grateful that they don't interfer - I could see a mess there! he he Gonzales - come spend some of your free time here with the rest of us that can't get out and about by ourselves.
(1)
Report

Oh yes... having time alone outside is now one of mymain problems. In other times we use to do that, each one went to see friends or family without concern, now is differet, If I had to take a time: Where are you going? To see such and such. Then she makes a very sad face and asks: Can I go along? Of course! and that is the end to my time alone...
What I am doing is to meditate alone anywhere, with her next to me. And I do that in cinemas, or theaters, or even in restaurants. She chats and chats, as allways did, and I travel in my mind.
That weay she is calm and I have somo precious time for myself. I would love to find out some way to be really alone once in a while... but we are solely both of us. My family is too far and her only sister runs away as frequent as she can. I believe she is scared of a similar future. Thjey have a precedent with their mother
(1)
Report

Thanks one and all for the nice feedback. It means a lot to me to have found a safe place to come to just to talk, talk, talk! I am up a 1:30am because I am stir crazy thinking about how the last conversation went. . ."What are you looking for". . .me: "Nothing". . ."Why are you looking". . .me: "It's okay, I found what I needed". . ."What did you need". . .me: "A pen". . ."What are you going to do with the pen". . .Me right now. . .OMGosh, I wish I hadn't picked up that pen!!! ha ha It's been that way in his waking hours and I am spent! Rattled, emotional, and need to get out of the house tomorrow. Thanks all for reading this stupid stuff, but it's good to type it out, re-read and sometimes laugh at myself!
(1)
Report

Yes, a nice work. But, is not the most dificult point? My wife asks me I don´t know how many times a day: What day is today? Do we have any engagements? and some time later again. At brekfast time is another circle, for years, since we married about 30 y. ago, we decided some chores for each one: For her was to prepare breakfast. So every morning she comes and ask what do I want, I say and she goes to the kitchen. Now I dont never know what I will receive. But rarely what I told her. And if we have something to do without saying anithing, I go annd prepare for both, calmly, talking about something else.
To me that has being the answer to this problem: to answer as calm as posible the same answers, time after time. I don´y see another way.
Our friends are just beguinning to notice, and I don´t know what will happen. Perhaps we will be ostracised, perhaps we will see less people. I don´t know at this time.
Of course it means that is worsenning. What to do? I don´t see anything outside me.
(1)
Report

tooyoung, I always hate it when people tell me I'm a saint or an angel. No, I'm a human being doing my best, which is often pretty darn good but never perfect. Fortunately we do not have to be saints to do a good job. And fortunately perfection is not required.
(1)
Report

PegofmyHeart, people tell me I'm soo patient and such a saint. I feel like a fake, because if they only knew - how impatient I feel and unsaintly my thoughts are some times. I guess it's because when people ask how we're doing I tell them my husband's current condition, but never say much about how I'm doing except fine. Can't really admit, except to you guys, that I'm a mess sometimes and feel like I have no clue what I'm doing.
(2)
Report

It sounds like you are doing a great job, PegofmyHeart. Vent away!
(0)
Report

Over the past three years I know I have been very patient and helpful to my husband in every way that I can. Probably being the only caregiver hasn't helped my situation. His questions seem to revolve around why I don't want ice cream at night anymore...for example. I tell him I don't like ice cream anymore. Why? Well, it gives me a toothache. Why? I have senstive teeth. Ten minutes later. . .why don't you want ice cream anymore? I go thru the same answers. I don't elaborate; quick to the point. . .but the same question pops up again and again. Why did you put five razors in my shower.. . .I didn't. Let me look. . .yes, there were five there! Oh, I have no idea, but I put them all back in the drawer except one. Why were five there? See my point? It's really not a matter of anything except how to deal with my emotions. . .and, guess this is a safe place to let out a little steam. I also remove myself from the room if need be - even if it is a trip to the bathroom and some cold water on my wrists. Staying away from the kitchen and all the food that was once a comfort, but put on the pounds! Suppose I have answered my own question here. . .remove myself from the situation - if for only a moment or two to calm down. People tell me how loving and patient I am, but they don't see the lonliness of the nighttime!
(1)
Report

PegofmyHeart What are the questions are the the same every night?
If you know what the questions are.... " what days is it?" write it on a board and make it his routine to look at the board for the answers.
My Mom always went to wash her hands and said where's the soap I showed her but she did not think it was soap because it was liquid. She didn't recognize it as soap. So I finally figured that out, and put a bar soap on the sink ...The End of that question.
(1)
Report

Gonzalez38, I want to point out that my husband did continue to take all of his meds. He also had his beer or wine. For us it wasn't either one or the other. It was both medicines and the alcohol (in moderation.)
(0)
Report

PegofmyHeart, yup, vent here. Be as patient and caring as you can be when answering his questions. He can't help it. But we get it! I hope you realize that while it is important to answer calmly and patiently, it isn't necessary to answer in detail or at length. And the answer "I don't know. I'll see if I can find the answer on the internet tomorrow" is OK, too.
(3)
Report

Please. . .someone tell me how to cope with the same questions over and over and over. It is a nightly question "why this". . ."why that". I explain - every night for a month, then I am ready to blow! I know he isn't "getting it". . .but how do you cope with the emotions? I am about at my wit's end. It's like the 3 year old asking "why Mommy". I came straight to this site after telling him again and again the answer - he doesn't believe my response or will ask the question in another 5 minutes. I am going out of my mind! I am patient; I am calm; I answer the question; I answer the question again. . .Guess it's a good thing I have AgingCare to go to tonight! ha ha
(2)
Report

Another comment:
For the firs time in many, many years, I had a nightmare a couple of days ago, I dramt that we were in my city, crossing alarge avenue, she went ahead walking fast and all of a sudden a truck came from around the corner and run her over. Inmediatly after, I run to her, but she was like death. I was crying and calling her my love and telling her that I love her so much...
I wakew up trembling and moved... She awaked and asked what happened... I did not tell what happened
(0)
Report

I am so glad with your answer. It is quite the same I experienced with my wife (with a dubious opinion of a med) I saw her unhappy when I told her that that we shoul not drink any, So after a while, not observing any positive results from the medicines, at the end of the bottle, I just don´t buy a second, and drank our wine or beer. And to my surprise, very often the glasses are half at the end of the meal, and is not requesting every time. Only in some places or moments.
The same happened with the sleep, afte interrupting the meds, she wa irregular for a while and then adapted, and follow the usual costume of many years. Of course, sometimes either one of us has a bad night, but... who doesn´t?
(0)
Report

tooyoung, about the wine: As my husband took more and more meds I wondered about the effect of alcohol. Not wanting to be the bad guy in this I brought it up with his dementia specialist, in front of my husband. Is it safe for him to continue to have wine or beer? The doctor replied (to my surprise) "No more than 2 glasses a day. If they make symptoms worse, such as unsteady on this feet, then we'd have to discuss it again." I am SO glad I asked the doctor. Otherwise I might have deprived him of one more joy in his life and for no good reason. Toward the end I think he liked the idea of drinking and the memory of how he used to like it than he actually liked drinking. He'd order a glass of beer at a restaurant and most of it would still be in the glass when we left.
(1)
Report

To all interested,
Yes, we are in a boat that has some few rules: One is that this probles change our dear ones, to incredible conditios; othe is that this situations are of long duration, the least I have read here talks of 5 years, many are refering to 10 years or more ; and the third is they all end in nightmare years finishing in deaths. I have read Pauline Boss, first superficialy, then with great interest. And given agreat deal of time to the question of costs, and to the satisfaction for the dear in trouble.
Why I am saying this, I have written before that I choose to avoid meds and medicatios as much as posible (I know that in my case, this is posible) and my wife is following me, I also know that shew is doing this wihout knowing why. But I doubt the existance of a drug able to cure (Or improve signicativaly) her
condition, and also had read a lot about tentatives and experiences, without clear results. So I prefer to give her the little joy of a glass of wine, of choosing to go to a certain place of her each time more vague memories.
And with as much patience as I can handle, repeat answers to the same quatios and consideratons. And dreams. We have done some travel. It is very cansativefor me, constantly afraid of having her lost in a strange place. About a year ago she got lost in a shopping center in her home town. So I am not having the same life as before. But is not of aour choice, itis the disease, and ca not do much.
That is why she is not having much docs and medicines.
I am sure that this situation will change and at a certain poin I will require an asstant, to allow me some precious time of my own. I am wating. An still at that point, I am not sure of trusting much medicine in our lives.
Luckily (or perhaps not) as a mexican I am much free of the fear of dying. We all do that, the doubt is when and how... And most of us in this site are very well aware of this... and chained happlily or unhappily to a dear one in deseperate situation with only one end, at a long, long time
Best regards and prayers to all (believers or not, here it does not matter)
(1)
Report

Gonzalez38, I agree with enjoying what you can under the circumstances. Most of my husband's meds say no alcohol, but he enjoys a glass or two of wine now and then, and I think that is fine. He always loved to nap, and since he doesn't sleep well at night, I let him sleep most of the day. He loves chocolate and would eat a box full of Sees in one sitting, if I let him. But he is prediabetic, so I try to keep him to a "small treat" per day. I just try to keep some leve of moderation, which isn't always easy. He can be sneaky, so I hide the sweets, and thank goodness he can't remember how to use and is afraid of the wine bottle opener.
(2)
Report

Fantastic!!! all this situations makes me feel better, I am not so lonely, not alone. There is a comunity awating to give support and patience to listen. I was really in need of that.
In many of the comments I am seing frequent visits to the physicians, of various specializations:neurologists, psiquiatrists, general practitioners, etc.
When my wifwe was diagnosed the medic indicated a drug that may help her in various ways. Perhaps. Probable.
In exchange she would have to change her way of life, some of her habits, like time and way of sleeping, some foods, no alcohol (and allways we have enjoyed some wine or beer with the meals.
In exchange of what? There was no warranty of improvement if we did those things. Was a big, very big question.
When at the beguining I tried to applied the changes and give those medicines, she was unhappy, very unhappy, not understanding why.
So I decided to let her live the way she enjoys life, the way we have allways were. To me, us, is has worked fine, she seems happy, playful, content.
And we have seen less physicians and take very few medicines. I don´t know if this is correct, don´t really know, but seing her happy is enough to me, even if I know that she may not be aware of what is happening.
I am planning to make a full check -out to try to define the diagnose. Pray for the posible best, and pehaps change the tune.
Even so, I don´t think in changing our life strategy. (Even if is a one side desicion)
(2)
Report

Dear NotHisFault, Your situation and mine seem very similar and we seem to"deal" the same way. I have been keeping a written journal of this journey for 3 years now, it really helps me, no one will ever read these thoughts, vents, rants, etc but it does help me.

My husband is totally dependent on me at this point, meds, dressing, toileting, showering, feeding & so on. He has frontal lobe dementia and his speech has been greatly affected, he barely speaks ans when he does it isn't always understanable BUT he still knows me and still tells me i'm pretty and that he loves me. This warms my heart and breaks it and the same time. I too am very grateful for all the wonderful fun filled years we had together before this horrific disease crept into our lives.
Everyday is a new day and everyday caregivers like us do the best they can and that is all anyone can ask of us. You are not alone.
(7)
Report

Dear NotHisFault, I like your idea of a "venting journal". It is true that either putting things on paper or saying them out loud helps. I just feel like a broken record right now! I don't think you are any slower at learning this than the rest of us. There is no instruction book. No two days are alike. No two patients are alike There are only similarities and differences and "could be's" and "maybe's). Nothing is definitive about this disease whether it is Alzheimer's, Parkinson's Dementia or Demential with Lewy Bodies. There is crossover and distinctive variations, and each brings its own challenges. You are not alone....take care and God bless.
(2)
Report

Caregiving is caregiving - whether for a spouse or for a parent or other family member. I am 63 and caring for my husband, who is 72 and has dementia (diagnosed 3 years ago). We've been married for 27 years and I am so grateful for the life I've had with him. I am blessed because although he can do very little for himself any more, he is kind and loving. He does get combative once in a while, but I know it's because his pride has a difficult time dealing with this unforgiving disease. I don't know if this will help anyone, but sometimes when I get really frustrated or overwhelmed, I open up an ongoing Word document and bullet my frustrations - one after the other. It feels good when I'm finished 'venting'. I've named this Word document vent mechanism, "Learning to Live in His World - Because He Can't Live in Mine". Not sure why I am slow to learn this, but I keep trying. God bless all of you in your sacrifice and efforts.
(8)
Report

NewWifeCareg Many of us are here for a basically the same common reason.... Someone we Love needs care and as we have been Blessed with Good hearts we want to do everything we can to Comfort our loved one in their time of need.
Giving up is not an option for us!!!!
I turned my whole life into a Caregiver Attitude Goal. It was like I was possessed by a person who I didn't know was inside of me. I was never so focused on anything in my entire life. I knew one thing and one thing only I couldn't live with myself if I threw in the towel. I know that the majority people on this site have the true gift of giving. I am telling you this because you need to know your special and you matter. If negativity gets in your way don't welcome these thoughts especially by anyone who can't support you. Try to focus on what you can do and not what you can't. Put one fire out at a time. You can only do your best and that is all you can do. If you got married for Love that is what you need to focus on. That Love should be your strength. You came to the right place you will find support in the good people here.
(2)
Report

Ed and I were together for 15 years, He was a very good executive chef but a very loud one.His career ended the day he had sugery to start dialysis which he did for 15 years. Most of the time we did dialysis at home and we managed apartments.FOUR doctors told me that stress caused MY stroke.Now I am crippled but I can walk and live alone.Stress will put you in a wheel chair.Get treatment!!!!
(1)
Report

Good for you! Your spunk is inspiring. Please take care of yourself. I agree, good friends are a treasure. As I read your story, I'm reminded of the saying, "A life well lived is the best revenge."
(1)
Report

I am a spouse caregiver. My husband had a major stroke three years ago, and now - as I look back - he must have had smaller TIA's, because I became very confused at his behavior before the major stroke - especially with credit cards, our checking account, etc. When he was hospitalized for two months I had to do everything, and discovered what he was doing and what he was hiding! I trusted him because he was "the man of the house" and a businessman. What a shock to my system when I encountered what he was doing. Worse than that is that not one of his children have been to see him. Okay, one came to the hospital once - it was a two month stay and three others have sent Christmas cards - might as well have addressed them to Santa Claus. . .no, that would have been way too personal. Anyway, no one is helping me. I have to reach out to friends to get myself out of the house for a few hours - they are great. It's a must to reach out and keep dates with friends that care. I have gained a lot of weight from stress and night time eating; and I had two bouts of shingles. Ouch! I have started finding my way back to healthier eating and getting more sleep. Oh, yes - I've experienced a vulture. . .but I am in charge and he isn't getting anything that my husband hasn't already decided on and laid out in his will. I may be tired, a little ditsy some days, but I still have a back bone and spunk! I am also dealing with someone on my side of the family that is starting to take advantage of my eldery father. . .but, again I step up and put my foot down. No one is going to run off with my father's property - they seem to think they can talk him in to giving them his car and other valuables. An accounting of his assets seems to be a priority and proper as dad needs money in his account and unless those that steal from him are willing to take financial responsibility for his care - they better watch out!
(7)
Report

This site has room for discussion on spousal caregivers and what is helpful and what is not. Also, there is something to learn from caregivers of their elderly parents. Every time I use this site , I learn something from the people that are taking their time and energy (which is valuable when caregiving) to make suggestions and hints on making the caregivers and the patients lives better.
I am a spousal caregiver. It is shocking how the vultures start flying around when they think a relative is vulnerable. Yet, they don't really want to help you they just want to stir the patient up and see what in it for them. I say thank you for all the caring. Here we are all in this situation together. Take real good care of yourselves. Good Bless.
(2)
Report

WOW! I am so glad to hear from so many people experiencing so many of the same problems...even tho I wish none of us had to deal with any of this, at least we know we are not alone and that there is hope, however small, that we can deal with the never-ending changes, not knowing if it's Dr. Jekyl or Mr(s) Hyde to whom we are speaking at any given moment. Although my husband has been diagnosed with Alzheimer's, I suspect it may be related more to his Parkinson's or to Dementia with Lewy Bodies. The latter two are not well known and those who are dealing with it are sometimes caught in a hailstorm of misinformation. There is an association for LBD I'd encourage you to check out on line. I just did recently, and have received some info from them (just today) so I haven't had time to read it, but I will. I'm so glad I found this site. It is so good to be able to "talk" to others who are experiencing the same emotions and fears I am. Early onset is another beast that is really scary. I have a friend from my old church back in TN who's husband had early onset. He passed away last year after just 5 years. His wife was so strong through it all, especially since the week her husband died, she found out she had breast cancer. She is doing well now, and I attribute her courage to her strong faith and a wonderful family support system. She was very fortunate to have her family close.
(1)
Report

Finally, a discussion I can actually relate to. It has been more than a little frustrating to read so many comments from those caring for their parents and so few from spouses caring for spouses. My husband and I have been very happily married for 26 years; he is 76, and I am 8 years younger. It was suggested to us about 3 years ago that he may be in early dementia, and a neuropsychologist who evaluated him then felt that his condition results from a progression of brain damage suffered in 2003, when he had a subdural hematoma. While many of his faculties from the uninjured side of the brain are still fairly well intact, the increasing deficits he's been manifesting are consistent with the injured brain hemisphere. And I can definitely see a progression of the dementia behaviors, as well an increasingly profound short-term memory loss. I often equate my existence to negotiating a minefield, never knowing what will set him off, never sure of whether I'm dealing with the man I love or his evil twin. Initially, he primarily needed me to assist him by dispensing meds; but he has in recent months begun to require my help with dressing (has forgotten how to tie a tie, cannot concentrate well enough to make clothing selections, etc.). He's become more vulnerable and impulsive in financial matters, has fallen for questionable internet offers, and has been taken advantage of by friends and relatives. He's also having occasional incontinence issues. So, yes, the relationship does change at some point from one of great, passionate love to one of caring, friendship, and compassion. And, of course, by degrees I am assuming more and more control. Gradually, though, I am learning to take things as they come, and keep reminding myself that it is indeed the disease, not the person. And I make it a point to take good care of myself, as well, so that I can take care of him.
(2)
Report

I would just like to point out the subtitle of this site's name: Connecting people caring for elderly parents. That hasn't stopped me from being a very active participant here while taking care of my husband with dementia. I have found it very valuable. But since the site was developed for and aimed at people taking care of their parents it is not surprising that most participants are caring for their parents! :-)

Now my mother has dementia. Although my husband has died I'm still on this site.

Many aspects of caring for a loved one are similar no matter who the loved one is. I believe that many, many other aspects a slightly or significantly different when we are caring for a spouse.

Hang around. You can learn a lot here, and you also have something to offer. Just don't be surprised that there are no articles addressing spousal caregiving and that most participants care for a parents. That is what this site is for.
(5)
Report

2 3 4 5 6
This discussion has been closed for comment. Start a New Discussion.
Start a Discussion
Subscribe to
Our Newsletter