Ever feel like not one person in your family or friendship circle understands? They ask, "How is your husband?" And you always reply, "Ok." That is what they are wanting to hear. The children that you raised and loved AND always have been there for them- now just think- "My mom is still the same young, never tiring mom." Friends and family only wish to hear- "Oh everthing is alright." I want to tell them to imagine their loved one who is normal RIGHT now- then imagine them becoming a child- a child that you have to keep on behavioral medication or they would be rageful, having to answer the same question over and over and over again- with a smile, a spouse who no longer can drive, work, pump car gas, go to the store to pick something up for you, cannot hardly eat with a fork, cut food up, doesn't remember we have been somewhere- when we have been to that place at least 100 times. I'm sorry, but this morning I just feel like crying- I am alone. I am a nurse, therefore, when I go to work today, I will feel better- I can reach out and take care of the sick and elderly patients and know I make a difference. I lie in bed in the early morning hours and remember my husband- what he was. Yes, he tells me he loves me 10 times per day- but the intimacy is gone- he is my 61 year old child. Where oh where has my husband gone? I am so sad that my family thinks- "Business as usual or my mom is still that strong-resiliant mom." Don't they realize that I have to go to work, leave my husband alone, support us- and if I cannot keep up, what will I do? It is all up to me and I am 57- not young anymore. Again, I feel alone in this journey. I guess when I have to finally "place" my husband they will understand that is hasn't been business as usual.
I know how you feel to some degree. I don't think I have experienced the full weight of it. I guess that is one area where those of us with kids at home have an advantage. We have our children who understand exactly what we are losing - they are losing the same. We have that bond with them. Last night after hearing a heated argument between me and my husband, my 12 year old son came and just put his arms around me. It meant so much.
I hope you have someone today who can just put their arms around you - either symbolically or physically. Just know you're not alone. We understand how you feel - how you hurt.
Rosanne, Believe me, you are not alone in feeling alone, telling people what they want to hear, having no one to talk to who really understands, having to go to work every day to support the 2 of you, one of which is a child in a 6'2" body. It's certainly not easy and I know it is not going to get any better, but I persevere. I have 1 child, if you can call a 41 yo a child, who tells me to take care of myself. Otherwise the other 2 only care about their father who is going downhill really fast. I try to understand but sometimes I get on my "pity party" like right now. Sorry. Take care!
I feel the same way. Family calls to ask how we are doing and why do we always say OK? It's not OK. It will never be OK. I have lost my loving husband, the way he used to be. He was always the one to comfort me when I was sad or having a bad day. Always the one to give me that hug I needed so badly. Now I cry myself to sleep, in the dark, so that he won't know that I miss the way he used to be.
Bless each of you! We are not alone, each one of us understands. I too, have a 37 year old son, who, of all people, should ask how I AM? But, unless this happens to you, no one understands- Family and friends live in their own world, dealing with their own issues, not grasping what this horrible disease means! Just keep going , we will make this through. Bless You.
Roseanne, my husband is 69, and at the same stage you described. We have four children - the oldest single daughter has moved in to help me (she's 45), and she knows what I go through, and when I'm about to lose my temper, I call to her and she comes running and takes over so that I can go outside or to my room and let her deal with whatever it is he needs to do and won't listen, or get him to stop trying to repair something that isn't broken.
She is my comfort so that I am not alone, but she doesn't understand MY loss like all of you do. You all have become my mainstays! Thank you, Joan, for this website!
Maybe it is time for honesty. When someone asks how you are doing....be upfront and explain that you are having a tough time. I don't mean bitch and moan, I mean actually tell them what is going on. You may find that people would actually like to be helpful and if they know you could use a hand, they might just come through.
I know it is human nature to just tell everyone that you are fine, your LO is fine....everything is peachy keen! We all need to reprogram ourselves.
I have been through what you all are dealing with.....I know how tough, how isolating, how frustrating it all is. Give yourselves permission to reach out....it is okay!
If you are vulnerable enough to share what it is really like to live this life with a loved one who has Alzheimers then perhaps you can write as you have done here and share your written thooughts. I try to share my experiences by poetry meant to enlighten specific aspects of this change in my relationshiipi with my husband. I know the feelings exposed and the situations are too embarrassing and raw to easily share with others . I sometimes wish there could be another virtual reality TV show where the participants are family members and they change places for a week to care for our spouse. We could then get some much needed rest, and perhaps the family members would realize the real reality of caring for a person with Alzheimers. There is a dire need for the public to be educated to the reality of never ending grieving, physical exhaustion, and money drain, in caring for someone who is changing into a stranger. The ratio of people contracting alzheimers disease is becoming an epidemic and almost everyone has someone, or are friends with people who have someone with alzheimers.
When family or friends ask how my wife is doing I usually answer "as well as can be expected. There are good days and bad days". Usually that is all they want to know. As with the rest of you, almost never does someone ask how I am doing. Sometimes one of my kids will, but they are all so far away that they cannot help with the care. The main thing that keeps me going is that my wife has not shown any rage, just tired all the time. I try to take her with me whenever I go somewhere such as the store, a meeting, church, etc. In one month our daycare center will open so I will be able to get more time to myself - such as going to the Y to exercise and keep in shape for what lies ahead. It does get lonely. I miss the wife I had - the conversations, jokes, working together on projects, etc.
I know that I was guilty of not understanding--or even caring--when someone told me their FIL had AD and didn't remember the g'children, etc. I had no idea what the family was going thru, how could I? Then when DH got it and I told others, I got the same response. He appeared so normal, what was MY problem! And for a long time--years--even I didn't know what was happening, that I was dealing w/a brain disease. I simply had no idea. When asked, I usually said everything was 'fine' because it was too hard for me to talk about it w/out crying.
Our children were always 'there' for me, supportive, but they had their own lives, helpful in an emergency, but only I could be the 24/7 CG who saw it all. And I didn't understand how hard it was for them, even tho they were adults, to lose their father. The one time my son let me see his anguish, it was like I was hit by lightening, I was so tied up in my own loss (and had a right to be) that I had never considered his--and they had a special relationship.
As for placement--all I heard from most was that they didn't see anything wrong w/DH. Like I really had no reason to do that. But the children finally breathed a sigh of relief, they thought they'd lose me to the same disease, and the doc said 'about time, you lasted longer than most.'
I think it is the 'nature of the beast' and we are caught up in an unseen horror that is invisible to others, even if we describe it in detail, it's one of those things that no normal person can absorb and believe. How in God's name can your words make anyone understand. Supposing I told someone that DH could not find tomato bushes in his own yard--they'd laugh or dismiss it as something weird that I said. And even if they believe, what can they say or do? I find it hard to believe myself and I lived it. But those of you reading this know that every word I say is the absolute truth.
My DH is gone now and some may wonder why I'm still here, but I find that I am able to say things now that were deeply buried for many, many years--even I didn't know how deep. There was no one to share them with, no one who understood, and sometimes it's a catharsis. I have a good life now, I'm really happy and content, (I want others to know that will likely happen). But you cannot turn off the emotions of 53 years of being married to your childhood sweetheart, those feelings do not go away just because your LO leaves, so this is a comfortable place for me to be at times.
Before this monster reared its ugly head I really never thought about the caregiver. People never ask me how I am doing. To this day I am still told how "normal" DH appeared. I wrote an article in our community and Temple newsletter about caring for the caregiver. The response has good-lots of phone calls. Now I make the effort to contact other caregivers and recent widows to see if they need anything or just want to chat. One recent widow doesn't drive and I often invite her out for outings. She and I will be roommates on an upcoming trip to Naples.
I've had quite a few friends/relatives remind me to look after myself - enough so that I wonder if I looked stressed to them? What I see in the mirror is the same me I've always been - so who knows. My deceased spouse would always say "FINE" when I'd ask him how he was. I started thinking of that as one more of those FOUR LETTER WORDS... When the grocery clerk says, "How are you" - I somtimes feel like asking them how much time do they have!
When people ask me how things are going, I answer, "We have bad days and worse days. No good days anymore. And it will only get worse." They asked and I tell them. I actually have more offers for support than I can use. I'm lucky that way.
I'm fortunate that daughter and family and a granddaughter and her family live in the country near us, and they see and know what hb is like. They stay w/him while I go out if I ask them. Two friends also know hb; in fact, he goes for coffee w/us once a week. One of their hb's has severe physical health issues and beginning AD; so we share. A few former co-workers know and a couple men have said they'd sit with hb whenever I need them. Since hb doesn't know them, I won't ask them because I don't think hb would like it. So I'm fortunate I have family and friends who care even tho not living w/it; don't *totally* know--except for the one. Then I have a new support group I meet w/once a week (have attended twice) last gathering until fall is Tuesday. It's a relief to be honest w/some. For others who know the words "vascular dementia," but not the fullness of it, I answer their questions with, "We have our good days and bad." No one's asked me to describe them. HA But I am blessed by these family and friends and by you on Joan's blog.
Zibby, call those men who were willing to "sit" with your husband and discuss ways for them to become his friends. Maybe they can come over and chat, or play cards, or do puzzles with him while you are there once or twice, and then after he gets to know them, you can go out and run an errand or two while they are with him. Or they could take him out to lunch. Ease him into it. The time will come when that odd hour or two to get out of the house will be a blessing. Don't cut it off now.
I have read a couple of responses to to Rosanna's post and how many of us will answer with an OK when it is NO ok in any way shape or form. It has got hard for me not to feel some level of anger, though I would not want our kids not to have a good life and enjoy things, but it seems we were the ones who always sacrificed for them so they could go to school, go to college, etc and now when we should be at a place where we can enjoy some of those things in life we worked toward, we are stuck in ALZ hell. So there is a huge part of me that does not want to hear all about their trip to someplace or other, or the hikes they took, or any of the other seemingly carefree events when all I have is the sameness of every day..get up, make sure DH takes his meds, get breakfast, do dishes, make bed, do laundry, go to the grocery store, the drug store, find time to do the yard work, clean closets and just try to keep up with the madness... Just yesterday someone asked how Ozzie is...why don't they ever ask how WE are? I don't say OK anymore...I say as well as can be hoped for for someone who has this disease..They then asked if they could help and to be sure to call if I need help. I told them that DH would enjoy Jim coming for coffee and to chat or even go out for a bite..someone to talk with beside me all the time..and they said they would come over..Then I hastened to add..( these people are neatnicks and things are always ready for company, the way I used to be) that my house is not house and gardens ready..you will have to deal with a working house...the dust protects the furniture..and I just do the best I can trying to keep up with it all. So we will see what wil happen.
I don't think a curt answer would do us any good at all and I don't think it would make us feel better to deliver one. But to aks if they really want to know the truth of how it is to have to contend with this disease and how much time do they have would garner some level of how interested the person asking the question really is. I think, as someone pointed out above, that perhaps we owe it to the community to stop answering with the standard OK and just start to be up front..To the people I mentioned above, I mentioned that last week was the first week is a long time that I did not have to stop everything to take DH to some appointment and I had great plans for what I wanted to get done only to discover the level of fatigue that has set in now. Anyone else notice all the aches and pains that set in mostly due to poor sleep and worry?
I have a broken wrist, arm in a cast and am so tired of doing everything. My DH told me today that i looked wiped out. I told him that I am. He does not seem capable of doing anything. I am so not wanting to cook and don't feel up to going out. I need this cast to be off, it is so heavy. I finally see why people go into assisted living. I thought I would always be able to keep going.
I think back in the years after my hb had and affair and sitting in court hearing the judge calling it rape cause she was a minor, and later when I was deep in depression: people would ask how I was and I would answer 'fine'. Inside I was in terrible pain, confused, or suicidal but no one really wanted to hear that. They only wanted to hear 'fine or OK'. But, in honesty, how many people in general really want to know how your are? They ask because it has become a 'custom, habit' to ask and they expect a 'I am OK or he is OK'. The only one that wanted to hear the truth was my pastor or counselor.
I am alone- my Larry would never have believed this! I did place him 6 horrible weeks ago- should have never done that. It was better taking care of him here, at least he still knew only one thing, he loved me. I try to keep myself busy. I go to the NH 2 times per day, I go to church, I go to the movies, I go to eat, all alone. I have never been alone and I hate it. My children and family have zero understanding of my aloneness. I keep saying, "Where is my husband- he would have never left me alone." I am going to volunteer at a hospital 2 days per week- I am trying to make my way, but the saddness is overwhelming- I am alone. I cannot work as Medical-Medicare states I will have to give every bit of my earnings to them, as I was allowed to keep my husband's small retirement, but still have a co-pay. I am a nurse and could work today, but again, all earnings would have to be handed over, per, CA guidelines. I cannot make his small retirement last all month- no one understands my total despair. I am going to start selling furniture, etc., this darn disease is indeed a robber. Again, my husband would never have believed this. He was always here for me. I spend about 6 hours per day at the NH, as my husband still is my identity. I have never ever felt so alone.
ckkgram - do your children live nearby? I don't know your circumstance, but I know my children would assume I was okay becuase I have always been the rock of the family. Maybe your children are assuming you are okay. I think you should print out your message board entry and show it to them. They need to know that you need their support. If they are not in the area, tell them you need them to come visit, that you need them. You should not be alone - no one should. Do you attend a church/synagogue/etc? or could you find one nearby? If you do attend, let the church leaders know that you need support. I think the volunteer job is a great idea; I hope you can develop a support network there.
Rosanna, I truly know how you feel. I've felt that way for the past 4 years, but it is beginning to lift. Nature seems to have a way of healing itself. I found that by going to a stress psychologist, the process is speeded up We are both nurses, but I retired at age 60, 20 years ago. Would you consider even taking a part-time job? You might find one that is so interesting that the money issue does not factor in. And if you keep your skills up, you're set for the rest of your working life. Too long out of nursing, and you'll need to take a refresher course. Just to be practical, you don't know when your husband is going to die, and you need to be still functioning and independent when he does. No, your husband is not your identity. He's only part of it. You are Rosanna with a past that didn't include him and a future that probably won't, either. I hope this doesn't sound too harsh, but I think that the world needs you and not a second victim to Alzheimer's.
Starling, you're right, of course. I can ask men who offer to come while I'm around so hb can get to know them. (Hits forehead w/hand.) Same w/"cleaning" help as others have mentioned.
Starling is finally singing the song I sang to her for a long time. Caregivers need to accept every stitch of help they are offered, ask for, or just fekll in their lap. Keep a list of tghings needing doing and when a generic opffer of help is made, pin it down with something specific. There are things only th Caregive can do in caring for their LO and then there are all the other stuff that needs doing. We cannot do it all--nor should we. Anyone can do dishes, run laundry, vacuum, mop, mow, rake,etc. Also, getting help in or volunteer visitors early on will get your LO adjusted to others being around and helping. This will make your caregiving life much easier as things progress.
As for any guilty feelings--chuck them out the door. One of the best gifts one person can give another is to honestly appreciate the gift they are receiving from that person, acknowledging how much it means that they care.
There is enough Aloneness on this road we're on. We certainly don't need to increase it through our pride or stubbornness.
carosi--you are right, and I remember that your advice helped me when I started bringing aides in over a year ago. I think that some of us just aren't used to needing/accepting help, we now find ourselves living a different kind of life, and it's a new behavior that has to be learned.
ckkgram, I see where if you work all your earnings would have to be turned over to medical medicare.. I have a question..since your work would end up sending a 1099 at the end of the year, would you end up having to pay taxes on the funds earned and forced to be given to the Medical Medicare?If that is so, on top of all the rest of this "robbery" that is an outrage that would not surprise me..
Not to change the subject, but just about feeling alone, tomorrow is my birthday, so i said to my husband, today is July 11, guess what tomorrow is, He answered like a snotty 11 yr old, July 12.... aren't I smart to guess that.... Anyway, I was driving us home from my daughters then, so I said, yes, but what's july 12. his answer... suddenly angry. I don't give a f..... what it is. Why is it your birthday???? When I didn't answer he said, you're not gonna tell me..... (again like a snotty kid). OK, so the tears began rolling down my cheeks, as hard as I tried to stop them. And I just suddenly felt so alone. Here I am with an 86 yr old toddler with a snotty mouth. what next. i did manage to stop my tears finally, after distracting him with 40's music on the XM radio. but i'm so sad.
happy birthday chris. this is surely the worse part of the disease. if they are unaware its one thing to bypass those feelings but when they obviously make nasty comments knowing what they are saying its totallly another. please know that many of us here endure or have endured these crying jags over things that come out of their mouths. the best learning curve will be to go get a birthday cake and icecream cut yourself a huge peice and eat it all. and of course be sure to give DH a slice and tell him its your birthday and you wanted to share it with him. if hes nice ok if not you ignore it -i know its hard. your friends here understand and wish you a nice day and hope you find something nice to do for you. divvi
Chris, I add my wishes for a happy birthday. Be kind to yourself today. You have to be your best friend. Divvi's right that you have lots of company here, people who have been or are going down the same road and understand your loneliness.
Chris, a heartfelt Happy Birthday. My DH was never one to celebrate my birthday or bring me a gift for Christmas, Anniversaries etc..... He was a generous man in all other respects but special days were not his strong point. I am just thankful he was a faithful husband and father. Do I miss not having celebrations? Most certainly but I miss my DH more. Pamper yourself today.....send yourself flowers. You deserve it!
I wished you a Happy Birthday on Facebook with this Maxine bit of wisdom and I am going to share it with our friends here. Take every birthday with a grain of salt. This works much better if the salt accompanies a Margarita. Have a really good day ♥♥
A belated Happy Birthdy Chris. When I saw the title of this posting a few days ago, it resonated with me so very much that I thought I didn't even need to read the comments section. The title said it all.
Thank you to all of you for your birthday wishes. Actually, I ust reheated last nights dinner, I let my dh toast me with his lemonade (I had wine, ) and a little while later, when he asked where Chris was, I didn't even blink. Just told myself happy Birthday, and put him to bed. LOL.