Caregiving for a husband/spouse seems to be a missing topic. Lets get our two words in.

I've been married over 30 years and I am taking care of my husband who has diabetes, end stage renal failure, congestive heart failure and mobility problems. My heart goes out to the new wife. The worst part of the all the illness is the mobility issues I have no idea what we will do when he is unable to walk he is a big guy and I find taking care of his needs now exhausting. He has stated more than he is not going into a nursing home. I do have family and friends who will do anything and always offer support the problem is this situation will not get any better and I hesitate to ask as often as I would like for fear of burning them out as I know I am.
I wonder if any one experiences anger I find myself very angry at times. Angry at him angry at the diseases angry because we are not living the life I thought we would as empty nesters and retirees. Going any where with him takes almost military precision how far a walk is it from the car to the wherever we are going -even with the handicap permit we have problems, are there stairs- he can't climb them- do the chairs have arms -he finds it difficult to stand up from an armless chair- on and on it goes. I know this is more difficult for him than me and I so wish I could fix the problems but I can't.
I was reading something recently about exercise being one of the best things a care giver can do for themselves. I used to go to the gym 3x a week as hubby got worse I went less until I finally stopped going at all. I'm thinking it's about time to start back although I did exercise yesterday shoveling that foot of snow we got!
Anyway I'm glad to have found this board I feel better already. Wish everyone well and I will check back in soon.

Brooklyngirl, your post really struck a chord with me, as I have been experiencing a lot of anger because of my inability to do anything concrete to restore our lifestyle to a more even keel. We deal with the mobility issues too, and a lot of my anger centers there, as I blame my husband's adamant refusal to exercise for his deteriorating condition. I myself go to the gym 5-6 times a week, and definitely benefit from the physical exercise, as well as the camaraderie of kindred souls I've met there. After tormenting myself for far too long over things which I cannot control, I made a resolution at the beginning of this year to better manage my attitude, which is about the only thing I can control. And it is working. You get what you give, and I'm finding that my more positive attitude has thus far fostered a less stressful atmosphere at home, while restoring some of my inner peace, as well.

Both Brooklyngirl and SWOMBO are so right. I am glad you are exercising...I try to walk every day. I don't like the gym, but it's good for some people, especially the camaraderie. I'd like to take some Tai Chi classes or something, but $$ are tight so I won't be doing that. I have a DVD I can use, but a class is more fun. I also agree that if we could get our spouses to exercise, they'd be better off, but it's nearly impossible. Once they get in the habit of NOT trying, it's really, really hard to get them going. If anyone has any suggestions, I know we'd all welcome them. I used to live next door to a woman who cared for her 95+ yr- old Mother. She took her for a walk everyday through our little development until her Mom absolutely couldn't do it. I'm sure it was good for both of them. Her Mom used to sing whenever she saw my husband and me..."It's a long way to Tipparary..." My husband used to chime in...it was funny and I think that poor old woman knew we cared even though she had NO idea who we were. Each time we saw her, we were new to her which was fine. Keep up the good work! don't give up!

Wow! Can't tell you how truly helpful this website is! Been so busy with my job, commuting, being a caretaker for my husband (of 32 yrs.) that I literally haven't had time to read any of these wonderful discussions in probably a month! Let me start by saying that my heart goes out to all of you, as although all of our stories are "unique", we all share something in common: dealing with the dailey struggles of care-taking for a spouse with Demention/Alzheimers. I will be 62 next month, my husband just turned 73. He was probably diagnose with Dementia (I'm guessing) 5 or 6 yrs. ago, while we were living in the mtns. of N.C. (in a log cabin in a very remote area with no family around) I am (and have been for many many years) a full-time flight attendant. I've been based in "Philly" for the past 6 yrs. and commuting from there to Charlotte, N.C. and then an hr. & 45 min. drive home to the mtns. Ted, (my husband) is also an insulin dependent diabetic and on numerous other medications. When he was diagnosed with the dementia, our N.C. Dr. of 23 yrs. put him on Aracept. He hid this from me very well, and used humor frequently to mask his confusion/memory loss. being gone 3 to 6 days at a time, I guess I didn't realize the severity of the disease and brushed it off as "normal" forgetfulness that we all suffer from! (looking back, I blame myself for being in denial!) About a year and a half ago, he seemed to get progressively worse. He could no longer handle the finances, which he'd been doing for years since he was "retired" and I was gone working full-time. (He was forced in to an early retirement when he lost his 26-yr. flying career, as a pilot when Pan-Am filed bankruptcy in '91.) He dumped all the bills and financial responsibilities in my lap and he seemed to be getting more & more forgetful & confused. I kept all of this from our kids (grown son & daughter in Miami) because (like my mother before me) I don't like to worry or burden the kids and always try to "handle" everything myself! (as so many of us do!) When I finally told the kids they went from being angry at me to "jumping on board" and (especially our daughter) learning everything she could about this illness! He was progressing to the point of not remembering his meds or insulin and there were many episodes (when i was out of town) where I went into a panic mode when I could not reach him only to find out later that he'd not taken his insulin (or at least i assumed) and his blood sugar was up in the 400 range! March (a year ago) the kids intervened (I was on the verge of a nervous breakdown, suffering constantly with depression and horrible anxiety attacks and constantly getting sick) yet still continuing to commute & fly full-time. April of last year our son flew up to N.C., "rescued" his dad and flew him back to Miami with him. Our daughter rapidly found us a rental apt. in a retirement community and the kids shared the responsibility of caring for their dad while I managed somehow (with the help of some incredible friends!) to pack up everything that i could squeeze into my little SUV (including our cat & dog) and Memorial weekend drove the 14 hrs. to Miami, crying the whole way! (loved our peaceful little town in the mtns. and swore we'd NEVER move back to S. Florida!) The commute from "Philly" to Miami is a lot more difficult, but I now know that this is the best place to be for both him & I. His short term memory is completely gone, but he is able to live alone when I'm out of town and is doing remarkedly better since moving to Fl. He's surrounded by love: our daughter, son-in-law, son, daughter-in-law and 5 grandsons and because of them is socially more active than he's been in yrs. and as stressful as my life and job are, I can leave town a little less stressed knowing that if I need the kids all I have to do is call and they'll be there in a heartbeat. Is the situation perfect? Hell no!!! I wouldn't wish this horrific disease on anyone, but for now, he's in a "good place". For the most part he's mellow, "happy-go-lucky", funny and doesn't have a care in the world. Everytime I come home from a trip, no matter how exhausted i am i make it an effort to take him out and do fun things. (Even if he forgets it that nite or the next day, I want to make as many good memories as I can while he still remembers me/us.) I know things will get worse, but for now I just have to keep on working, keep on praying and try to take "One day at a time". Please forgive me for babbling on for so long and God Bless all of you during your struggles! Thanks for letting me vent!

New wife, I am taking care of my husband who has something, I think it is pre dementia or dementia. Also he has aspergers syndrome and attention deficit disorder. So I understand where you are coming from. He had depression but got better, but while he depression, he was mean and nasty. Also my mother has AD so I have a lot on my plate. Mom is in the NH.

Leslieann51, you are so very lucky to have family and love ones that you could go to, I know that we will have to move in the near future to be near his family, I have no family of my own, and hate leaving my home that I bought with tlc on my own some ten yrs ago, however I know things will be better. And as luck has hit, for his surgery on the 14th, his daughter who is a RN and in charge of all nurses within a hospital in ILL is going to be here for it, me feeling much better about all that is going on and not being alone for this, will be a big help.

Brandywine1949, you hang in there, as we all do, I know will do great...and we will all be here with each other for anything needed, sure do know that this site has sure helped me...reading stories...hugs given and received....don't know what I would do without it!!!

I've been following this thread but hesitated to join in because my husband doesn't have dementia he does have depression, crippling arthritis, hypoglaucemia and a really bad balance problem just name a few of his problems. I also am a newlywed of almost one year. My hubby was my high school sweetheart and we were fortunate to reunite after 40 yrs. I went into this marriage with my eyes wide open because I love this man of mine. just because his body has been unkind to him over the years, doesnt mean his heart isnt still as sweet as it was long ago. Some days a real challenge with the balance problem. He falls a lot so I'm nervous about that. The last fall was on marble flooring and he ended up in ICUS with 25 stitches and a brainbleed. Still, we don't have it near as bad as most of you all do. I admire and respect all on this thread. I give you a big salute for keeping it together as we'll as you do. Thanks for sharing your experiences and knowledge. We all know life can change in the blink of an eye. I just try to do one day at a time and make my husbands days as good as possible. Blessings to all!

Dear Always, I am sure that what I am writting is something usual for you, but still... To me, the most important and trascendental aspect of this page, is the posibility of venting and telling aloud, (even cursing I woudnt mind) of problems that may be are not mentioned outside. Use it as much as you feel useful.
On another aspect: I had polio as a baby, living my whole life with weekness in my left leg. And once in a while I fall, in my case I don´t have weakness, so never had being more than lacerations and some pain. But because of it, I am very careful of the shoes, not special, but well made in the base. Also at some times or circunstances I use a cane, I have some (Having various is for vanity, but all of them are useful and adequate) I am particularly careful in marble, or polished stone, rain and stairs.

This site is such a great support for anyone who checks into it. We learn from each other. If anyone has suggestions we will be glad to read them. I read somewhere the government is changing where Alzheimers patients can stay for care paid by Medicaid. It is still being argued in Wash DC. as of this year. Keep your eyes open and write your state senators,federal congressman etc if you do not agree. God Bless We need all the help we can get.

Gonzalez38, thanks for the warm welcome. I am sure I will have questions and comments (but I will skip the cursing, thanks :-)). This is a new experience for me and I have to determine how to give my husband space and dignity and not hover or be too protective.
Thank you for sharing your experiences with polio. I will check hubby's shoes. Yes, a cane is a good idea, just don't know if he'd be receptive yet. Since the last fall, we sold the house, moved out to the country and the house is fully carpeted. He has fallen a few times but no injuries.
It comforting to know I'm not alone and I appreciate the opportunity to learn and share.

Always...wow! You are to be commended...knowingly taking on this kind of responsibility is unbelievable! You are fortunate to have the love of your life with you.

My husband has Parkinson's and dementia. He has had Parkinson's for 12 yesars and the dementia has become worse the past two years. Cannot be left alone, has "punding" behaviors, (going through drawers, closets, etc. continuallly). I have to constantly know where he is and what he is doing. He can become agressive if he wants to do something and I try to stop him. He does have some mild self-mutilating behaviors and hallucinations. I wish I could put him in a nursing home at times, but we don't have long term care insurance. After all our money is spent on nursing home, what am I supposed to live on. I am 70 and am too old to live in a box under an overpass. I consulted a lawyer that was supposed to specialize in elder law, but he wasn't much help. Said that I could keep house and car. That doesn't help pay daily living expense like insurance, taxes, my meds and food. I cry every day because I am so scared of the future.

Dear Lyndaholt, call the Alzheimer's Assoc and your local area agency on aging. They will have resources and guidance to help you. My husband also has both of these diseases (at least that is the current diagnosis; going through lots of testing right now to be sure...hallucinations are associated with a different type of dementia, but he could have both)...Call today! There is help out there. If your husband is a vet, call the VA. They also have resources available. Don't take this lying down! Go out there and fight for what you need/deserve. There are thousands of people getting help who never paid a dime in taxes/SS/Medicare...we who have been paying all our lives deserve the benefits, too!

Lyndaholt, I'm not to point yet where I've had to reach out for assistance but sure the day is coming soon. Please stay on AC because there is help here. Other caregivers can guide guide you. All of us can offer moral support at the very least. My heart goes out to you. Do you have family or friends to help? You won't be able to go thru this alone and I'm surprised you've handled all this and you're still sane. Scared offers sound advice, don't give up.

You are very right into the: "to give my husband space and dignity and not hover or be too protective" That is one of may priorities. Even if frequently I feel like exploding and held myself of doing things. I force myself to stay put and wait.
I am not surte if carpeting is a good idea, in my cse I woudn´t do it. (now it is done, so...) I feel myself more surefeet in surfaces like wood (or sinthethics like) but of course you know bewtter your situation. About the cane perhaps you ca mencionate that is elegant, I would suggest to choose a nice one, not one of those horrendous orthopedics ones.

My husband doesn't like to use the cane we have because it's adjustable in height and it "clicks" sometimes when he puts it down...he is SO vain! I just smile and tell him we'll look for another one....one of the few lighter moments in the struggle.

I have called the Alzheimers Assn. They aren't much help. I need some sort of day program. Nothing lose. I take him to a memory care program that is good, but it is a 45 minut drive for me. If go to grocery store it's OK, but can't go back home because I spend so much time on road. That is the only way to get hair done or an appointment for my self. Oh and I am responsible for my 99 year old Mother. Thank goodness she is in assisted living and gets excellent care, but I have to do her appointments, meds and financial affairs. I don't know if it is our area but agencies aren't helpful. Thanks for trying to help. Think I'll go cry now because it's time to get him up. :(

Good Morning all ! Thanks for the response and suggestions. SWOMBO you are so right controlling your attitude is key as is deciding to be happy. If nothing else it can't hurt.

Dear Lyndaholt - try your local area agency on aging and the local mental health association...check to see is there is a group called Senior Choices in your area...they may be able to help you. Don't give up. Help is out there...it's just hard to find sometimes, and I know how time-consuming it can be to jump through the hoops, wander through the maze and get frustrated and tired. In the long run, it will be in YOUR best interest as well as your husband's.

When I joined this thread the other day I wrote that my husband didn't have dementia. But to be honest, I am concerned something is going on with him. I know he has never been tested, he may have never thought it was warranted. I only reconnected with him two yrs ago so I don't know how he acted previously. After reading some other posts, I now am concerned. Lately he has been doing things out of character. I don't know if its his age (63), the severe pain he suffers from arthritis, his meds or what. I'm asking for some advice, if y'all would be so kind. Do you go on full force observing mode, keep a diary of events, bring it to his attention or what? We go to the same GP and im wondering if ethically its ok to discuss it with her. Foremost I want to give him respect and be above board. How do you approach this without offending him or scaring him? Last night I very nicely reminded him that if he ever felt anything was amiss, he needed to share (he's very private) it with me, his partner, because if anything went wrong, I might be the only way he got help (hope that made sense). I can be headstrong and one of those take charge at all costs kind of gal. I don't want to screw this up. Any and all ideas will be greatly appreciated.

By all means observe, journal and talk to the doctor...but be sure you have your husband's permission or some legal means to talk to the doctor otherwise the doctor can't/won't talk to you. If I had been more observant a year or so ago, I wouldn't be in the fix I'm in. Read all you can on Alzheimer's and other forms of dementia...there are many....research, research, research....it proves you care! This way, too, you can ask pointed questions when you are talking to the doctor instead of being vague. Learning the "lingo" helps. Good luck! I know how much my husband's personality changed about a year ago...if I had known then what I know now, I would have been better prepared and prevented some of the bad things from happening.

Dear Allways, in our problems no one can tell you what to do, only you can decide. So I am going to tell my experience and what I did. And remember that this processes are at very long time. So I would recomend to be very cautios and slow.
About 5 years ago, (my wife had 65) I began noticing variations on her conduct, things that she did not explain. First I tought of an adventure, out of her character and age, but not imposible. So I kept to myself observing and began keeping in mind the conduct alterations. Without much comentaries. Only things like: Where were you? Why? winthout insisting, and saw failures in the answers. I wish that would have being the problem! After about a year she changed, she began forgeting small things, messages, etc. And one day she was lost in a Mall, a large one but not enormous. So I decided that we had a diferent problem. Let another year passed and about 3 year ago I told of my suspicions to our GP at the time of a yearly check-up. He weas worried, examined more carefully and ordered a psychological cognitive exam. I made also, so she did not exactly know why. If I was wrong, would beno harm.
Unforunately I was right, and we took a diferent way of seeing life. The dianose was clear, Not the prognose. And I let another 2 years go by, observing very, very carefully everything
A week ago we made another ChUp and came the confirmation, it is Alz.
In comsequence all is changing again, to begin with, I advise in a e-mail all our close friends anf family. The answer has being conmovent, full of frienship, worrieness, and I believe, in love.
Now I will wait the next development. That is in few words my experience.
Best of posible lucks and hugs

Scared, thanks so much for your advice. Even tho my dad had Alz, I lived 300 mi away, had teenagers at home, worked full time and didn't get home enough and throw in the fact that he'd been "off" for two yrs before my mom thought it important enough to tell me. So I wasn't in the position to observe my dad in the early stages. I really hope I'm wrong but I owe it to my husband and to me to find out what's going on. I'm sorry you and your husband have had to and are going through this.

Good Morning everyone, I have been absent from this area for a few days, and want to let all know what is going on. My husband had his surgery yesterday and for the last few days have been in a tail spin getting things ready for his back surgery. Well, yesterday after everything was done, I have the wonderful news that my husbands disk was something the doctor has not seen in years, instead of a 40 min surgery to give the nerve area relief, it was over 2 hours and he felt there was a good possibility that the nerve was damaged beyond repair...however, for the first time since I have known him, remember I am the newlywed, he walked out of the hospital...YES, he walked out, no cane.I have been in tears of joy since yesterday afternoon..and today he is walking around here like a rooster strutting his stuff...

You know sometimes we don't get to give good news here, and I had to share this with you all. Yes he still has dementia, that will not change and that is hard on us all here, however what a thrill to have something go right...God bless you all here...and just wanted to share good things do happen for us once in a while here.

I may not be able to get on a lot for a couple of weeks while he is not allowed to carry more then a cup of coffee or twist, and the recovery is so very important because he forgets that he can't do things...I am staying up a lot right now, not much sleep and watching him close because we want him to be careful. Hugs you all..

NewWife, oh such wonderful news. Your message came through loud and clear how happy you are! Take care of your "rooster" and enjoy your newfound joy. The best to you both.

Gonzalez, I'm so sorry the confirmation was Alz for your wife. Even though you weren't surprised, I'm sure it came with much sadness. I guess all you can do is take each phase as it comes and be prepared as best you can be. Your wife is lucky to have you be by her side. Hugs to you too.

Considering the privacy laws that are in place, I'm sure your physician would share any info re: your husband with you, providing he has signed a release form. They would then be able to give you any info re: his health. I had no idea my husband had dementia until he had surgery; following surgery, he seemed very confused, disoriented, etc. The surgeon told me anyone over 70 can be confused,etc. following surgery; however, he said since there was some underlying dementia, the confusion may not go away, that dementia is progressive and at times after surgery is more apparent. Until that moment I had no idea he had dementia. Hindsight is a terrific thing; after the surgeon made that comment, I was initially in denial, thinking there was no way he had dementia. Since then, I have been thinking back over the last couple of years and realized I did not pick up the signs. I recall that he used to be a very kind, thoughtful person. I had noticed something was "off", but could not figure it out. We used to go out for dinner, etc. The last couple of years we did nothing together, unless there was a family get-together. He would buy cars, motorcyles and not tell me. I made the remark to a friend long before the diagnosis that I felt like I was living with a stranger. I would attempt to discuss something with him and he would accuse me of arguing. There were times when we would have a discussion, I would ask a question and he would just walk off. He would leave in the morning to have breakfast with his friends and not return home until late in the day, take a nap, eat supper and go to bed early or "run an errand", anything to not be around me. After the diagnosis, I found out from his friends that they had noticed odd behavior, he could not appropriately answer a question, his driving became very dangerous. When I tried to talk to him about his driving, he would become incredibly angry with me and tell me to get out of the car. I also noticed the "hoarding" in his car........bank statements, cancelled checks, blank checks, bills that were not paid, etc. Many, many other items just thrown all over the car. I would find scraps of paper with the bank balance scribbled on it. I talked to the bank and was told that he would be in there frequently, asking them to balance his check book (apparently he could no longer do that); when they worked on it for him, he would argue that they were wrong, that was not the balance. He had overdrafts. I was totally unaware of these things since he would hide his check book from me. His friends told me they had noticed the poor driving habits. I would ask where he had been all day, I would get a vague answer. He would make very foolish purchases, buying items from infomercials we did not need. He would lie about anything. He would have a problem taking his medications according to instructions. He would also become angry very easily and normally, he usd to be very good natured. Paranoia is another sign. It's good that you're headstrong and have a take charge attitude. I wish I had been more observant, perhaps I would have noticed the odd behavior sooner. Dementia is progressive, but there are drugs which can help slow it down, but not reverse it. I've been told that anyone with dementia does not realize they have it, if they are told they have it, they deny it. They believe there is nothing wrong with them. Please let me know how things are going. I wish you the best. There is a SLUMS test that can be given by a physician or social worker. It's a 5-7 minute test (just a few questions, nothing demanding). 0-20 is severe dementia, 21 + is moderate.

Star42, thanks for sharing your story and the advice. I think it's normal to miss changes in behavior when you've lived with someone so long. If it doesn't slap you in the face as strange, you just think it comes with getting older. The only person who could tell me anything is my husbands ex and she hates us so where would the objectivity be or the truth for that matter. His sons are in their 20s and as nice as they are, they're not that interested in their dad, like a lot of kids their age. I started my diary today. It's evident something is not right, I just need to find out what it is. My daughter and her toddlers are traveling here as we speak and I'm anxious to see how my husband behaves the next 4 days. Last weekend his grands, 2 & 6, came for the night and he hardly interacted, left most of it to me. Not like him at all and that started my concern. That and the fact he made plans for us to attend a function after we'd just agreed not to go, sad he forgot. None of it seems like him. I'm so thankful for AC because if I hadn't read so many stories about this subject, I am not sure I would've snapped to it.

Hello! I'm taking Bookluvr's suggestion to reactivate this thread for spouses. I'm at the point were I need to go to an elder lawyer. How can I handle this and not make my husband feel bad? He accepts that he has problems, but prefers to call it ADHD.

We need to set up our limited resources so that whoever lives longer will have assets to live on, and so that he will be eligible for Medicaid when our assets run out.

Has anyone gone through this with a spouse who was still competent? What was it like? Was it painful?

Hello everyone. I haven't been on this thread for a while so I'll give you a quick update. My husband's condition of Lewy Body Dementia went down hill rapidly. He was pretty stable for about 2 months, but then everything went haywire. He took off in the car twice; got lost both times, and only by the grace of God was he and everyone else on the road safe. The second time the police were called. He was found 3 hours later, about 10 miles from home along the interstate!!! Fortunately, he was spotted by the highway patrol because he saw the car going very slowly. By the time he turned around and came up behind, my husband had pulled off the side of the road and the "Be on the Lookout For" alert came over the radio!!! He transported my husband to a behavioral center where he stayed for 10 days. He was just moved to a SECURE memory care facility because I can no longer keep him at home. It is too dangerous. I have been working on getting his license revoked, but there was a dis-connect between his neurologist and the neuropsychologist who did the testing and the results never got to the doctor. The only reason my husband pulled off the road is because he ran out of gas!! He did not know he ran out of gas. He told the police, "stupid car". I discovered it was out of gas when I went to pick it up. It was an emotionally draining experience that I would not want to repeat. I have been doctoring my stomach since the occured and am seeing the specialist tomorrow. I believe it's all just "nerves" and stress, but I need to be sure. So my friends I now am facing all that I knew had to happen eventually, but I am totally OK with it. Because of the number of "coincidences" involved in all that happened, I am sure that God's plan has come to pass in His time. I know my husband is safe and will be well-cared for. It's been a roller-coaster ride of visiting facilities and making all the arrangements, but I can now speak from experience. The people who work at these places have seen and heard it all. They will guide you through the process and give you all the support you need. Do not be afraid! I have found that by reaching out to people, they are more than willing to help in whatever way they can. If they don't or can't do it, they know someone who can and will. I will not see my husband for a few days...he needs time to adjust to where he is. He doesn't know he'll never be coming home. they have treated him with respect and genuine concern for which I am very grateful. When you go to see a place, do like you are supposed to do at a RR crossing: stop, look and listen. Observe, talk to people, ask questions...don't be afraid. I have some concerns about how my husband will react when I do go to see him: will he say, "Let's get my stuff and get out of here" or what??? I don't know, but I DO know that the people there...nurse, CNA, techs, admissions director will be there to help me. God is good. I am blessed.