Here is a copy of a letter I sent to Joan awhile back. Maybe someone out there in cyberland has some suggestions. My DH is now in a NH and there is little chance that I will ever be able to have him home again. Before being admitted I had cared for him alone for over the past 8 years. At times the aloneness becomes overwhelming. Ron is now an invalid that has to be fed, changed, and cared for full time. His communication in minimal at best. If I get two words together or a smile - it is a good day.
Be well and please stay in touch. Ruth ----------------------------------------------------------------------------------------------------------------------------------------------------------
Hi Joan,
I just read your blog of the day and started thinking. How long has it been since I heard the words 'I love you"? I cannot remember. Occasionally Ron will tell me I am 'nice'. Is that the same thing? How long has it been since he held me in his arm? I can't remember. Sometimes I get a half hug - but that's about all. It is such a sad life. I am there with him most every day. Today, everyone had banana splits. I fed him the entire bowl of ice cream - almost with tears in each spoonful. I still refuse to let him see me cry. Do I still love this stranger? I don't know. I haven't had a 'husband' in so long - I'm not sure I know what that words mean. It has to be the better part of 10 years.
I ask myself - what business do you have asking a total stranger these questions? I think you may know more than others. I hate being alone. When I promised - "Till death do us part", I never realized I would be alone for so long. Am I wrong to be so alone - or lonely as the case may be. I only wish I had someone to talk with - I use the computer just to have someone to talk to. What would my 'husband' do if I were the one in the NH? I don't know. Someday's I think I would rather deal with the roller coaster that is AD than to deal with this horrible aloneness. I have read your blogs about loneliness, aloneness, the emotional divorce, and most all the others. I am still not finding answers to my questions. Are there answers? Where do I find them?
I know I am not alone - I am curious to know how others do this. I have no dinners, no concerts, no ice cream cones, no rides in the country, no trips - I have nothing except ALONENESS. I don't know of a worse punishment than being alone day in and day out. Days I deal with by keeping involved and busy - it is the evenings and nights that I have problems dealing with. The evenings and nights ALONE! I have stood by this man day and night for years - will I ever find peace or comfort? Who would ever want me at my age? Am I destined to be alone all the remainder of my years?
I do hope you have at least a few answers. There are tons of articles available on the Internet, but none of them ever really answer these questions. They just dance around - but never really answer the questions. I hate being all alone day in and day out.
Thank you Joan, for taking time to read this awful letter, but this is where I am. The State of NY states that I am a "Widow", yet I have a living "Husband", I think. At least there is someone at the NH that I go to see on a regular basis. What am I - a wife, or a Widow? I am sure there are others caught in this nether land - how do they deal with it? I would like to have someone put their arms around me, and tell me they care for me. I would cherish having someone to just talk to. At times I feel no one even knows I am alive. I am still alive, I am a feeling, caring, lonely woman. Is there any help for me, or am I a lost cause?
Be well, and we'll chat again soon, I hope. After this letter you may never want to hear from me again. Please stay in touch, and I will try to do the same.
Ruth, you are the same as so many of us, a married widow. It is an extremely lonely situation. One is not accepted in the "married" community, nor is one accepted in the "single/widowed" community. One is neither fish nor fowl so to speak. I just want to be accepted and not judged by others. They have not walked in my moccasins, nor in yours. Take heart, we are here, and we understand. I know that does not make your life any easier, but just know you are not in this boat alone. We are there also. Take care!
god bless you Ruth, I know very well the aloneness and the lonliness you have now that you are once again alone without your DH to complete you and your life. I can only share with you some activities that I have embarked on to mitigate the emptiness of my life now. I found a friend who is a widow and we do some things together. You might be able to find someone through a Alzheimer support group in your town or perhaps your church. Finding a church or Senior Social group is a way of making new friends. Look in your newspaper for ads about these groups. Going on a bus tour can be fun and you will become acquainted with the fellow passengers. I have found that poetry, essay writing is my way of making life meaningful and fills some hours. You might want to take a course at the YMCA or local junior college. Volunteering might be meangingful for you. None of these activities will fill the hole in your heart and you will have times of terrible grief and sadness but they can begin to give your life some comfort and enjoyment.
Ruth, the aloneness and loneliness are a deep hole that is very difficult to get out of. The above suggestions are excellent. Do you have an interest you want to pursue in a craft or hobby? Take a class or two. Get yourself on a regular schedule of doing things - I still work full time and that often saves my sanity - volunteering 2-3 days a week is good if you can do it. If you are not exercising and can - add it to your life, excerise makes a world of difference to a person's well being.
The other thing, there are other people out there that feel the same way you do and are in the same rut. Do lunch with someone on a regular basis or take in a movie. I really like to do a matinee movie and dinner afterwards with a friend or two.
A couple of things happened recently that reminded me of an important maxim - if you want to have a friend, be a friend. This one seems so simple and yet the amount of time and energy a person with AD takes, steals that away from us whether they are home with us or in a facility.
Do you or can you have a pet? A cat or small dog that needs some care can really make a difference in the loneliness - I wouldn't have survived as well as I have without mine. There are many senior animals that need to be rescued that are waiting for someone to love them.
The hardest part in starting to fill the hole in your life is taking the first steps to doing something about it and sticking with it.
The first thing I noticed about this disease is the isolation. My husband was isolating me long before I couldn't leave him alone. At this point I can still go out and leave him, but I'm not sure how much longer that will be true. There has been a sudden downturn, and I'm only going to be going out for things like medical issues until I figure out just how bad it is.
So I get lonely. I don't have contact with the outside world except through the computer. As good as that is, it is not the sound of a human voice. It doesn't have a face. I'm not one of those people who learned to pick up the phone and call people. I truly have phone phobia as far as dialing out. If someone calls me I can talk, and talk for quite a while. But making calls is WORK and it is HARD.
I've been making lists of the things I would do if I had some respite. Because at some point I know I will, and I'm going to need those lists. I will have forgotten how to live.
So what are you all going to say to me when I tell you that at 78, I've met someone who has been helping me with the court case, and he is as lonely as I am? I'd known him for about 10 years before as a friend, and now, suddenly, it's become more. I don't want to hurt anyone - I wonder if this can be avoided? Discretion, yes. But I'll never have another chance to have a man this wonderful in my life. No, I haven't made that final step, but I'm tempted. Comments, please.
Mary, this is not the first time this has come up here. We do what we need to do to survive. And considering what you've been going through for the last few months, I'm amazed at your strength and courage.
The truth is that most of us are already widowed in any way that really counts. I'm in no position to say yea or nea, but if you can let joy into your life...
The sheer exhaustion and caregiving needs will keep me from having another relationship at this point even if one came along:) i do think if you are comfortable and having some fun in the company of another person then it would be a postive experience. i do know if the shoe were on the other foot my DH would have the hired the best of care for me but would not put his life on hold-even saying that i am just too needy emotionally to think of trying to move on at this point. divvi
Mary, who would you be hurting? From everything you've said, I know it would not interfere with your making sure your husband is safe and well-cared-for.
The only thing I would be concerned about would be: IF your husband's children found out, would it hurt your court case? Perhaps it might be better to wait until those issues are settled before making any changes to the relationship.
Mary, life is short, go for it. I wish I had the same situation. I wouldn't hesitate. Who would you be hurting? Everyone needs someone he or she can relate too on a deeper level. The only person you would be hurting is yourself by being so concerned about what others think. I think Divvi & I are the hesitant ones, what the heck would the next man bring? Maybe one day I'll get over it. Right now I would be content to be alone, but I guess that passes with time. I think you are very fortunate.
The court case is this coming Monday, Bastille Day, and I agree with you; it is imperative that I wait for that to be taken care of first. I was thinking that this week be limited to coffee together one day, and a walk in a nearby park another. Can't promise anything after Tuesday.
Thanks to everyone for their comments and recommended article. I can't help putting some blame on my husband for making it so clear to his children all our 28 years of married life that they came first, and he shares some responsibility that together they went to the bank and cleaned out the bank account, the account I paid all the bills from. Thirty-one thousand dollars of bounced cheques that I had to make good - not good. Resentment that I had cared for him faithfully all these years is there, too. At least this way, I have a chance to be happy, not depressed, and I know I will have better health as a result. The other way, there were two people going down the drain and his children were pushing us to speed the way. Thanks everyone for the warnings; I intend to take the.
I don't think there are any wrong decisions on this site. We all deal with the same disease (dementia of some sort), but our situations, personalities and backgrounds are all different. Where we are in this battle may be different from each other also.
But, we all do the best we can, at the time, with what we have.
Comment Author rbosh CommentTime 57 minutes ago Hello again,
I would like to thank each and every one of your for all your kind words. It is indeed a cruel world we live in with any of the many dementias. I have not posted here often so most of you know little or nothing about Ron and me.
I am and have been very involved with Project Lifesaver (you can find it posted on Joan's home page) for over the past 2 years. It requires a great deal of my time these days and I welcome the involvement. I belong to 2 different support groups and help to facilitate a third one. My daily life is full - so it keeps me off the street and out of trouble.
I correspond frequently with Joan - and she has been very helpful in the past. I don't have alot of time to devote to other things. I am frequently out in the community advocating for all people with AD and dementia. At the hospital where my husband resides - I try to advocate for anyone and everyone who needs me. Some residents there have no families to help them - so I just step up to the plate to see they get the care they need when necessary. I am not afraid to stir up a hornets nest if I have to.
My aloneness comes from the time I have to be home alone. Mostly evenings. Sure I go out to dinner or lunch with other lady friends and things like that. It does not fill the need I have in my heart. Ron rebuilt almost my entire home, he was a master carpenter, and now it seems he is in every corner. No matter where I look I see his work and it makes me miss him more. The advise I am getting is to not sell for at least a year. Some days I think I would sell the house in a heartbeat - but that is being unrealistic. This is my home - I would surely miss not being here - so that is not the answer.
Most evenings I sit and read. Lately I have been doing a lot of work on Native Americans. This is my ancestory and I find the writings to be most enjoyable. We all need to know where we come from - even if we don't know where we are going. I enjoy writing and have had 2 pieces of my poetry published.
I spend a gread deal of time on the computer - most of my friends are now cyber-friends. After all, who wants to sit around and talk about AD and dementia. There are as many different topics as there are people, but most people want my thoughts and where we are and where we are going with AD. Like I know all the answers. If this were true - Ron would be home with me, enjoying our retirement. I would not be alone and struggling.
Thank you again for all your kind words. Just knowing there are folks out there understand what I am feeling and that I am not alone means a great deal. I do not have any pets at this time - I do not have the time, nor the energy to care for one and it would be so unfair to the animal. After 8 years as a caregiver I am trying to care for myself. This may sound selfish, but if I don't care for myself I can not help care for Ron. He is the most important person to me.
You will all be glad to know that I finally got the committeeship (conservator), in spite of my husband's children legal actions against me. It's not that there won't be road bumps ahead; they've already stepped up their harassment of me, and I'm walking to my car looking over my shoulder. I may have mentioned that one daughter was the "old lady" of the weapons man of the Hell's Angels, who has since been murdered because he became addicted to heroin, not allowed, secrets may spilled. As to the man who has been very supportive to me over the past few months, it is wonderful to feel protected and loved by someone. I'm enjoying this last chance. So there, Val.
Mary75 - congratulations on getting the conservatorship and getting past that hurdle. It sounds like you are being very realistic in realizing that there will be bumps in the road ahead with them despite being conservator.
Good luck with the relationship. I know I go back and forth in my head on whether I want another one or not (at the ripe old age of 50)- what if they get AD or something else so you are very brave to take the chance.
Mary75, I want to offer my congratulations as well. It has been a long, horrendous journey for you, and even though there will be hurdles, you will overcome them, I'm sure. I wish you happiness in your new relationship and hope that you have a much easier road ahead.
This is for Val in particular. Just when I thought I had all the t's crossed and i's dotted, I find out that the $350,000.00 that my husband was supposed to have put into the Merrill Lunch account earmarked for me was in fact put into an "estate account", with his 3 children named as holding equal quarter shares. I'll be talking to the broker on Tuesday, and then I guess it's back to the original lawyer who had stipulated the clause. The one good thing I can see coming from this is that the waterfront property will have to be sold, and that will remove that problem of the children's usage of it and their demands to upgrade it. Just to remove the image of the wicked witch, it has been my husband's retreat, and he never let them use it after they partied there (drugs) with the resultant mess that we had to clean up. I have a fridge magnet that a friend gave me that says,"It IS as bad as you think, and they ARE out to get you." Mary
Well, at least you found out. All my husband's stuff was on his computer & I had no way to access it. Will you be able to get it earmarked again for you & how did this happen? Seems a good idea to sell that property before those irresponsible children ruin it.
Val, when I was preparing the documents for the court case re. conservatorship, I came across a 2000 agreement that had been signed by my husband to open an account in my name with Merrill Lynch ( I had brought considerable financial assets into the marriage and this was part of a marriage agreement.) I had asked my husband about it back in 2000 and he said the "N.... Estate Plan" has been opened in your name." Over the years, I've assumed everything was okay. It's just in the last year that the broker mentioned in passing, "How fair it was for your husband to have made equal shares for you and his children in his estate planning." (By this time, I'm going around the bend with 24/7 care of him in our home , and it didn't register.) Now that the smoke has cleared a little, I look at this clause and say, "What happened?" And maybe this is why his children feel so entitled and smug - he said back in 2000 when they really started abusing me, "I'm to blame. I told them things I shouldn't have and gave them the wrong idea." Was this a hint of his developing A-D? It's just 8 years ago. I'll find out this coming week from the broker what the status is and what can be done about it. Sunshyne, I've cheered up, for the moment, and wait for the other shoe to drop.
Good luck mary. Keep us posted. Thank goodness your broker mentioned it! Hope you can get it straightened out. Especially since you brought considerable financial assets into the marriage.
Here's the update from the broker: In 2000, my husband started an "estate account" of $300,000.00 in accordance with our marriage agreement. He is to receive the income from it during his lifetime. On his death, I will receive the income. On my death, this children will get the income. So it does seem that the marriage agreement was honoured, and I can put that one to rest. Thought you all would like to know.