I've been blessed with great friends with great husbands who have been willing to take dh out from time to give me a break. But, I'm beginning to notice that I don't hear from them as much as I used to and I'm not feeling so much like a member of the club anymore. I do understand that they are fully aware that dh is uncomfortable with anything more than one on on activities and that he gets upset with phone calls to me at any time, so the only time I can really talk on the phone without causing him distress is when he's sleeping. This makes maintaining a close relationship with others pretty difficult.
All this to say, that I now am beginning to feel that forced isolation and loneliness imposed by this disease. I've been determined not to let this happen, but it is happening despite my best efforts. I can't blame my friends - it's no longer a comfortable place for them to be. I'm feeling pretty lonely and an outsider now. Oh, woe is me. I hate to whimper, but it is how I've been feeling lately and I just have to admit it.
Thanks for listening, I don't know how to say this to anyone else.
Yes, well...everyone here does completely understand. Without scanning old posts I can't remember--are you anywhere near being able to consider day-care?
I know, I feel it too. We all have either been there or going through it or will go through it. So, we do understand. Whine if you need to. That's why we are all here - for each other.
mothert, I'm ready to join your pity party. For the past 4 years we lived in beautiful northern CA. I debated for over a year about moving back to the midwest where we were from and where there is family to help. Finally decided we needed to move now instead of later. House sold in 3 days and with help of family we are back in the midwest. I haven't looked for a job yet and I'm not sure how well HB will do home alone. I've been so stressed out and burnt out that I just can't get enthused about working again but feel stuck at home and isolated. Yesterday was a really down day and I had talked myself into putting on my big girl panties and getting things done. Then this afternoon tried to plant a small garden with HB's "help". You can imagine how well that went. I just wanted to sit down in the dirt and cry. I have it so much better than many others and shouldn't complain or whine, but I'm sure feeling sorry for myself. I've tried to not dwell on all I've lost and to see the positives but today is just a melt-down kind of day.
mothert, you have every right to feel that way. Since Gord has passed away, I am continually amazed that I can go out the door any time that I want and come home whenever I want. I am still looking at my watch when I am out because I was so used to only leaving the apartment when I had a PSW in. It is so damn difficult and of course you are feeling the strain. Grumble all you want. It helps a bit.
jang* - It's not that I never get out, but it's just like jang* says, always checking my watch and having not enough time to enjoy time with my friends - relationships take time and I don't have it anymore. I do understand my friends want to help me, but, really, what can they do? This life is what it is and I just have to make the best of it. Thanks for letting me cry on all of your "been there done that" shoulders. I just have to find my joy again - it's around here somewhere.
Interesting topic. Just last Thursday, I became "mommy" to two of the fastest 3 month old kittens...sisters....Xena The Warrior Princess and her best friend and sister.. Gabrielle. Xena is a black tabby and Gabrielle is a cute tuxie half the size of her sister...at 3 months she is yet to hit 2 lbs where as her sister is again as big...but she can hold her own.. When I went to Dept ff Animal Services to adopt them ( I put in the bid the day we lost our Cookie as they were motherless at the pet ER) a friend drove up with me so I could keep my eye on the "new babies"...It was then that it hit full on how isolated and out of touch I really am..oh I knew I was not in any group anymore or clique but wow how abnormal it all is! I see people I know coming and going...but not us...not anymore...and when anyone calls it is usually to get DH out.
So true...and men have these too. Since I placed my DW 18 mos ago, the lonliness, the emptiness and the depression of living w/o a loving partner was unexpected and devasting for me. I don't think men have the quality network of friends that women seem to have and have for a lifetime. A man's network seems based on work..and not so much social. And no direction book on how to build one. But whenever I feel the need for a "pity party", I remember my life is good, I am healthy and, most importantly, my wife of 38 years is safe, clean, cared for and loved by an excellent group of caregivers...and I pull my "big boy panties" up and I am thankful for a life, despite feeling so all alone, that I should appreciate.
My husband is sixty-six and in the moderate stages of Alzheimer's. I'm feeling so anxious about the future. I'm not sure I'll be able to be a good caregiver as he declines. I find myself becoming frustrated and angry already.
worried, I was never a patient person. I did get frustrated and angry but I did my very best in a really difficult situation. That is all any of us can do.
Boy, do I feel your pain. Been there, done that and still doing that. For the past two years I have not gone one place without my dh in tow except on Wed. morning when the cleaning lady is here and that has just been for the past several months.
I not only want to be able to come and go when I want to, but I want to have my home alone time too. Home alone hasn't happened in probably 3 to 4 years. I am almost at the end of my rope. And, my daughters are always on me and telling me I need to be place my dh because I am looking so tired. Wish I had an answer for you, but I don't or I would use it myself.
Here's some plain talk--the answer is respite. Adult daycare, bringing in help, etc. If those aren't feasible, then the only thing left is placement. If there's no money for that, Medicaid has to be the solution. None of these are easy to accomplish, but must be done if you want to save yourself. As I told a member of my support group--"What a disease, it forces you to get away from the person you love the most in order to survive."
What great advice. It is such a difficult thing to even think about. But, so true.
In my case day care is out. Traffic is so bad early morning and afternoon here on the freeways plus dh is in this sleeping mode and so tired all the time. I feel that sleeping maybe why he is still here. The Hospice nurse and the visting nurses can't believe he looks so good and be so bad with his Alz., heart condition and COPD...and each one of them said it probablyi is because he is sleeping most of the time and that is the only way his body can handle his conditions.
I am going to be increasing in-house help. But, that doesn't solve the problem that depresses me so much of never having a day alone in my own home...or even an hour or two alone for the past 3 years. It is a constant care giving mode...Don't dare start doing something creative I would like to do..because that is when he wakes up from his naps..and then I have to quit doing what I want to do...fix him something to eat. Change the TV channel for him, make sure I know where he is every minute.
Placement is possible, but I want to be sure I don't do it too soon and spend all the savings and I have nothing left to live on if he dies. If something happens to him then I loose his SS, his VA pension, and his Federal pension. I could place him free in the VA facility but, they are nursing homes and I have been told by others they are not pleasant places to be. Maybe I can do that later when he doesn't know if the place is nice or not.
I remember all the bad things I did because they're in neon and have spotlights. I work at remembering all the good things I did or any of them. We're not good at that under any circumstances never mind under the kind of stress NOBODY wants anything to do with.
I dressed her and undressed her for well over a year. It was often frustrating. Sometimes I had to put her arms back in a sleve two and three times only to find she had 'helped' and pulled the other one out. Or she just kept turning to pick up a different top on the bed I had discarded. Or I put her socks on and in a flash her top was off again. And once in a while I didn't just get frustrated and angry - I screamed bloody murder and stormed out.
Guess what the only thing I remember is?
And if you watched someone else in a movie going through that where would your sympathies lie?
And that's human nature.
We don't talk about the other truth much. That we have every right to be angry and upset with what is happening in our lives. If our spouse deserves sympathy then so do we. If that's not true then we don't believe in the equality of human beings.
I can tell you this. Even though I did many things wrong and part of that in all fairness is that we don't want to give up on any skill or behaviour so we resist, I do know I did a lot and I know that partly from inside and partly from what many around me said. That's one reason I say this so much. Some people don't have those around them that are telling them what an excellent thing we are doing by just hanging in there with them.
Give up when you have to and fight for them where you can. Unless you're like most everybody and can't give yourself honest credit to save your life. You would think that this kind of sacrifice for love would open up spiritual realizations (religious or not) - but it doesn't. The hurt and loss overpower in the majority of cases.
Here's an image. Many believe St Peter is at the pearly gates with a book. Here's one of the entries:
Gave up years of their life tending to a loved one's needs.
Judith--I know that you mean about wanting time alone in your home. Sometimes when the aide was here, I would go up to the guest bedroom, shut the door, and sleep, read or watch TV. I especially remember doing that when the weather was bad or if I was tired. It was well worth having the aide here so I could do that and recharge.
My dh's fishing buddy takes him out once in awhile. I do have some time in my house alone that is if I don't have to take my sister to the doctor or my daughter someplace. I try to not schedule anything but sometimes the fishing is a spur of the moment and no chance to change appts. I like being alone in my house and long for that then I think "ok, girl, one of these days you'll be alone in your house all the time, then what"? My looking for work son has agreed to come once a week to take his dad to lunch so I'll have that time but I probably will have errands those days.
JudithKB: Check out that VA facility for yourself. People who use the one here in western South Carolina are happy with it, and I hear in general that VA care is much better than it used to be, that doctors work with a team much more effectively than in the private pay world.
The VA hospital which I could use is very nice and they have won several awards for being one of the best VA hospitals in the country. What these ladies were telling me was the nursing homes the VA contracts with where my dh could go for respite....I know he wouldn't want to go to a nursing home at this time. Plus the VA respite unit is on the first floor of the hospital and they have no lock down type of care. They don't contract with any ALF. near me. Very strange.
last week when I had my first respite day, and pulled over on the shoulder of the highway to sob and reflect, it was so nice that when it was over, I saw a picture of myself in the past, and my mistakes, then I saw me NOW, and I was so "proud" of how I am taking care of him, proud and actually a bit surprised. Moving on in one more little increment.
Mothert I hope you know how wonderful you are too.
Well, I see that this thread is much needed. I'm glad I felt the need to unload as it has obviously given all of you the same opportunity. Sometimes I think we all don't want to admit that things are tough and we're depressed because maybe it admits a bit of defeat (in our overly self-critical eyes). Face it, day in, day out, we never get away from our responsibilities to take care of EVERYTHING but ourselves. Just the way it is. I do get out more than most as my dh can still stay home alone during the day and I leave (alone) most of the time when the housekeeper comes and she cleans, talks to dh and makes him lunch. She will be his caregiver when the time comes; we are trying it out in July when I leave for 3 nights and 4 days to go to a wedding in a neighboring state - Can't wait! I never get any time alone in my own home, either; but, I do wonder the same thing as flo - one day I'll have nothing but time alone in my home and I'm wondering how wonderful (not) that will feel?? I long to be alone but not sure it will actually be as wonderful as I imagine.
My best friend called last night and she is an expert at digging out of me what I'm feeling and, in turn, making me feel so much better. Then there's all of you. Thank you, Coco, for your kind words and Marilyn MD, thank you for all your expert advice, actually thanks to all of you for your compassion and great advice. Together we will survive!
I'm another one who longs for time alone in my own home. I would love to involve myself in some project that I would enjoy or just have a day to clean out a closet. DH is pretty high maintenance these days and sometimes I feel pretty desperate. However, flo sure did give us something to think about, didn't she? One day we will be home alone all the time. I don't think that's going to feel so good.
How true MarilyninMD.--"What a disease, it forces you to get away from the person you love the most in order to survive." ..and surviving is getting harder and harder. i can't wait for him to get picked up for day care...he always wants me to go with him. Next step is placement, i don't know if i can do that...i wish someone would take that descion off me...
JudithKB--when my husband was on hospice, I found that they didn't contract with ALF's either for respite stays. The reason is that the ALF's are pretty much private pay and they will not take the rate Medicare pays for respite benefits. Nursing homes, however, have many Medicaid patients so they accept the lower rates the government pays. It is probably the same with VA respite reimbursement--it isn't enough for the ALF's to fool with it when they can get more from private paying customers.
As most of you know, I am working in an RV park. Last summer we had problems with a couple and this year seems to be no different. Long story but they seem to not be able to let last year go even though I apologized for whatever I did wrong (not sure what it was but I took responsiblity for my part). This year the manager has most of us in one row together. Last year we were scattered around so did not see them socialize together. The other day the managers were walking to the ones next to us and spent the evening with them. Having a husband who can not really be a couple is a negative. We are on good terms with them but to socialize with them or the others is out. Oh, we stop and chat with the other workampers but not socialize per say. Such is life which all of us are living.
One of the things I found most stressful was not being able to be alone in my own house. After college I lived alone for more than ten years. Never had a roomate. I worked and put myself through school and if money was short I took on dog walking jobs. The apartments may have been tiny but they were mine.
Years later, as H progressed in his career my favorite job was one I could do on the internet from home. Once H was no longer able to work he just stayed at home. It got to the point that I would just go out to get a newspaper and drive around for a few minutes. (And scream.)
Charlotte, are you still in Oregon? The PNW remains my dream.....
abby - I am currently in Eastern Washington. Today it rained/showers most of the day. The sun finally came out at sunset. We like it here cause the sun shines most of the time. Those non-sunny days are depressing.
O h, Charlotte, I couldn't agree more - dark, dreary days = depression. I feel so much more alive when the sun is shining. We live north of Seattle on a little island called Camano - fabulously beautiful. But, even with the awesome beauty of this place, I find it hard to be "up" when the days are dark and rainy (like today and yesterday). I have to remind myself to be grateful, sometimes.
mothert, it is a hard reality that as this disease progresses most friends and family fade away while you're still caring for your DH. They are uncomfortable, don't really understand what you're going through, etc. And yes, time away from the daily stresses of caregiving are essential. I have a ft aide for my H but still have difficulty geeting "me" time for a variety of reasons (my own health). As always, Marilyn's wisdom and advice is insightful and right on the mark.
mothert - a nephew lives on Camano Island. It is beautiful there. Use to go to Stanwood to Warm Beach camp in the 80s. Also love driving over Deception Pass north of you.
Well. I took Lloyd to my oldest daughter's to clean since she is gone on business so much. She lives on a huge hill and there are 4x4 posts that keep you from driving off the hill and an incline beyond that. Well, I pulled around her circle at the top of the hill behind the house and was all set to just drive down the hill when I left. Today Lloyd gets out of the car by himself and I run around and get there just in time to see him take a nosedive over the posts and down the hill about 12 feet. Over the posts I went and grabbed him out of the brush and he was a bloody mess. Pulled him up the hill (I don't know how) and got him in the house to clean him up. He had 2 scabs on his head from falling face first on the carpet - rug burn - and tore those off. He hurt his hand, both knees, and one shin...plus the head. I felt so bad and was kicking myself and saying "shoulda...coulda...woulda". Shoulda coulda put him in the back seat with the child locks on. That woulda prevented everything. But I want him up front with me like old times. Damn, I hate this! I try so hard to take such good care of him, but I just can't keep him down.
Charlotte, I used to work at Warm Beach Camp, and I still volunteer out there whenever I can. My grandkids go there to Summer Camp and I still have lunch (when I can) with my old working pals. Dh and I took our lunch to Deception Pass just last week when the weather was still beeeautifulllll! Wouldn't be surprised if I know your nephew, although the island is getting pretty populated now. I think about leaving this house when my dh passes (whenever that will be), but I have a hard time thinking about leaving this area, love it too much. Grandkids are a big draw, though. However, by the time I'm alone, they'll probably be too big to want me around anymore; they grow up so fast.
Linda, so sorry about dh's accident - try not to be too hard on yourself.
aww linda so sorry about the fall.! its things like this that happen that we try to become proactive prior to events. i am sure you learned the lesson. back seat child locks. yes its so hard to change habits but we do what we must. it will give you more peace of mind. i hope he heals soon! divvi
Linda, my wife's big fall down the stairs haunts me. She was such a mess and so upset by it that it's painful to me right now. But I agree with what you're trying to do which is keep him up in the front seat, keep him going, and take some risk to do that.
Charlotte - I am cleaning out the 5th wheel today. Need to advertise it for sale and move on. Oh how hard it is to give up a part of our retirement that meant so much. We've traveled to Wash. state several times. We spent an entire week in Mt. Ranier area with "full sunshine!" a few years ago. It is a beautiful state but the rain does come often. We lived in Tacoma many years ago when dh was stationed at Ft. Lewis. I had a new baby and was so in love the rain didn't bother me. It would really be a downer now though. I look at campers as they come through our town and hope those folk appreciate the fun they can have and don't take it for granted.
Linda, I think it is impossible to keep them safe all the time. We tried that with our children and it didn't always work. Flo, I look at couples who are older than us ( me now. It is hard to move from us to me) and I hope they realize how lucky they are to be able to even go out for coffee together let alone go on trips and have fun. My sister has never been a happy person and she and her husband have had over 20 years of retirement. They have been so lucky.
I have to agree the isolation is maddening! I have respite on Tuesday for 4 hrs. Itherwise I stay home or take my DH with me. I am basking in delight since the Major league baseball season has started. My DH will sit and watch a game all the way through without needing my attention. You better believe i keep up with the games. That was one clue for me something wa really wrong with him, he would NEVER miss a game if he was ok. I make sure I DVR them. That is a win win situation, gives me some freedom I so greatly need. I just wish they were on all year lonmg.
You might want to record all games, because by the time the season is over he will not know that he is watching a re-run of a game played earlier in the seaon. My dh is addicted to the program Cops... I record them and he sees the same ones over and over and never complains or comments that he has already seen that program. Of course, he can't remember much of anything for 5 mins.
divvi, Emily, and mothert, thanks for the thoughts. Wolf, I agree with you. It's funny how the smallest things like him in the front seat gives me some semblance of "normalcy". So-o-o-o the solution was to pull around her drive the opposite way and put us in the flower bed and then we just do a little dogleg to go down the hill. DUH! We went over the next day and parked that way and all I had to do was tell him I was running in the house and would be right back...don't move. Poor baby stayed right there in the car...never got out. Any time he gets visibly hurt, my daughter comes home and jokes with him. She will say "What happened to you? Did Mom beat you up again? That b****!" Sometimes he says "no" and other times he laughs and shakes his head yes. She says he always gets hurt when no one is around except me. For the most part, that is true; because I let him roam the house while I clean and do laundry. He knows not to even try the basement steps. When I go up and down to the second floor and he comes, I always help him. But he shoots up and down those stairs at will all day long and has fallen once since his dx. In the kitchen, I always watch him. All the knives have been put in a drawer now, but I always worry about the stove. And if he is hanging around the stove, I pull all the knobs off. Ky, I guess I will have to record America's Funniest Videos. He loves that show; just laughs and laughs when it is on. And Judith KB, you're right. They could watch the same segment over and over and over. For his show, it might even get funnier the more he sees it.