Welcome, Suze. You'l find the people here open and willing to share tips, support your downntimes and help navigate the Dementia world you've found yourself in. Other will be along to welcome you, and joang will welcme you and fill you in on the features of this site. But first, please tell us a bit about yourself, your DH (Dear Husband) and a bit more about your comment, please. What aspect of companionship with your spouse are you finding most troublesome?
M DH is 67 and has Vascuar Dementia and is in Stage 6. I'm 62.
Just someone to share thoughts with. I'm 64 and still work full time. He is 64 also and cannot carry on any conversation. The nights are long and lonely. The days go by fast but he goes to bed early so it's me and the tv. Suze
I miss the same things. My DH is 59 and I am 51. I miss having a husband. We are just starting on our journey. The only saving grace is our 14 year old daughter still at home. Without her I don't know what I would do.
Welcome to my website. We have a multitude of blogs and discussions on lonileness and the loss of companionship. Copy and paste this link for that discussion: http://thealzheimerspouse.com/vanillaforum/comments.php?DiscussionID=2275&page=1
You have come to a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 4 sections for EOAD (Early or Young Onset AD - diagnosed under age 65, which applies to your husband) members - two of which focus on the young teens whose parents have EOAD (early onset AD). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Here is just one of the links to a blog on "companionship" -http://www.thealzheimerspouse.com/losscomp.htm
Log onto the home page daily for new blogs; news updates; important information.
I have the same nighttime experience. Jeff often goes to bed at 7. At least by 8. So, it's the next couple hours or so, alone and really feeling it, that are difficult to know what to do with. Funny how I really appreciated alone time when I had a meaningful relationship, and was excessively busy with kid activities.
But yes, I hear you. The days are busy enough that I don't sit around noticing loneliness so much, but without real companionship and interaction all day, the nights are palpably lonely.
I remember well these same feelings when early mid stages were here. if your journey ends like some of ours- with many more years to go, it is some consolation to know you do adjust to the lonliness and find things to substitute the losses over time. most of us who have been thru the tough times, find the alone time rather enjoyable after the years of caring for our spouses. i know thats not comforting to you now while you are just beginning the lonely nites. so many of us have been where you are now. sending hugs and pats of understanding. divvi
I'd be happy if my hb went to bed and stayed there until I'm ready to get up :) He wanders--always to the kitchen/TV area now altho' he doesn't turn the TV on--raids fridge; I lock the pantry. Bouncing up and down to turn off lights and check on him is double dog tiring.
Welcome Suze. In a way the lonliness you are experiencing now will prepare you for the "after". If you start building your life now for the future it really helps. When you see the * after a name it signifies that we have lost our loved one.
Welcome, Suze, you have come to the best possible place. Hearing from some others on here how restless their spouses are at night, I really consider myself lucky that he goes to bed around 8 and sleeps till at least 8 -- usually, till I wake him up. I value the time alone, though I have lots of it now since he also spends 4 days a week at day care. It is a problem finding ways to fill the time in a rewarding way, especially in the evening when it's usually not possible to read -- I get too sleepy. So I talk to people on the phone or on these boards, play spider solitaire or watch a movie on TV. (I record them so there is always something I want to watch.) Best thing is if I can do something that needs to get done (there are plenty of those) but I usually don't feel like it in the evening.
But my real escape is jigsaw puzzles. For years I had no time to do them -- now I do. So I indulge myself and tell myself that I deserve the indulgence. I trade with friends, buy them at second-hand places, garage sales or on line. The hours fly by and I have to force msyself to get to bed before 1 AM.
Welcome, Suze.... many hugs for you - we are a family here and come here daily to get advice, give advice, rant, ask questions and be there for each other....this helps the lonliness....
My husband hasn't been able to talk in two years....I remember the last time I took him to a restaurant and it dawned on me that I carried on both sides of the conversation and he had no idea what I was saying... that was the last time I took him out by myself. After that, I had a daughter or grandchild or close friend with me, so I had someone to talk to!!!
Welcome, Suze! Sorry you have to be here, but this is a good placeto be for support & comfort. My DH is usually ready for bed between 8:30 & 9 & by that time I am usuallu so exhausted that I just go to bed too. However on the nights that I'm not ready he gets extreemly upset when i don't want to go to bed. I try to explain to him (silly me)that I don't want to go to bed but that he can go by himself. He just doesn't get it. He will go to bed & then get up 10 minutes later to ask me when I am coming to bed. Of course, if I tell him I'm not ready he gets upset all over again. I am hardlyEVER alonein my house & I miss that.
My DW goes to bed at 8:00 pm and she is out till morning. Yes it is lonely. She is not able to carry on an intelligent conversation for over a year. You are no longer to share your thoughts with your mate know that they understand the issues. Yes it is very lonely after 8:00pm
My DH goes to bed about 9.00 and sleeps until 8.00 the next morning. Sometimes he sleeps longer and goes back to bed once or twice during the day. I don't have the problem of him wanting me to go when he does because we have separate bedrooms.
The only "companionship" I get is in the mornings. It's not usually too bad then. By after lunch, he plays on his laptop and I can do whatever here at home. After dinner, he sometimes will take the dog for a short walk, then is in bed by 6-7 p.m. So I'm alone all evening too. I read, I take long leisurely showers, give myself manicure/pedicure, I do my e-mails, FB and read the posts on this site. I can always find something to do! Don't watch much TV anymore. He may get up once or twice for the bathroom during the night, but goes by himself - although I do wake up. Then he sleeps until I bring the coffee pot up to bed around 6:30 a.m. We drink coffee in bed for about an hour or so before getting up. Even with all this, it isn't the same - he isn't the same - I'm not the same either I guess. It's a tough life for all of us. This disease %@#%^^.
I have companionship. My DH loves for me to sit and talk with him but the conversation goes something like this: He...What day is this - Me...Friday - He...What's on our schedule for today - Me...Eating out with the family - (Pause)He...What day is this? Me....Friday - He...What's on our schedule for today - Me....Eating out with the family. (Pause) He...What day is this? Me...Friday - He...What's on our schedule for today - Me...Eating out with the family. I have to have a break so I leave and come here. I guess when this phase ends, it will be replaced with something worse. I try to be thankful for what he can still do. Gosh, I miss him so much.
My DH also calls it a day normally about 8. And I then have the TV to myself and I have quiet time. For me this time is not odd or lonely as he would go to bed at this time when he was a busy substitute teacher. He used to get up early but now sleeps to beteen 7 and 8. What I miss is the banter we had when watching TV. He can get focused on the program and If I ask him a question, it is hard to get his attention.
I miss my DH too..he is still funny and says witty things, has good humor and a gentleman's temperament and is expected to remain this way. What is so hard is seeing the brilliant man ask where I keep the ice cream bars, how do I keep them so frozen?
To all- I am nearing the end of my journey with my sweet lover husband. I have just transferred him to a wonderful VA Palliative Care unit from the most dreadful nursing home on earth. I remember those lonely nights so well- it does not end, only gets greater. During this journey, the ALZ stages change and so does the lonliness for your mate. The loss gets greater, so please just take whatever of them you can get now and during this passage. Hold them, kiss them, hug them. My sweet man cannot speak now, cannot walk and darn it, 75% unable to swallow. The unit does not wish to do Peg Tube placements, so I pray that God has mercy, as I cannot allow starvation for him. Bless each and everyone of you, as I understand this all too well. Rosanna
ckkgram, we will be holding you and your DH near during the next few weeks- praying for a peaceful passing and you find peace and comfort and strenghth in your decisions. welcome Suze! divvi
Welcome, Suze! Gald you found us, sorry you're here. The lonliness is the worst, expecially in the evenings. I am blessed and fortunate that my best friend has moved in with us to take care of my DH. I am 55 and still work full time. She takes care of him during the day, and is someone for me to talk to in the evening. I'm lucky. hang in there, we're all here for you. Rosanna, I will keep you and your DH in my thoughts and prayers. I'm glad he's in a better facility. God Bless! (((HUGS to you both)))
ckkgram I have been where you are. Trust me-your husband will not starve or feel hunger. His body will gently shut down and his soul will drift up. We will be here with you.
I want to welcome you too, Suze, I agree with everyone that we are all going to be there one day and that day will come soon enough but in the meantime please cherish what you do have. I have no idea how long my DH has had dementia just how long it has been dx but in the last 6 months he has advanced quite noticeably. We have to think about the future and plan for it but don't forget to live in the present and enjoy what we have of our LO's now. I am lonely in the evening too and that is why I am on the computer so much. I am on FB also. This website has been a companion for me as well.
bluedaze* I think you are right on the money. My husband still eats well but in the past few weeks, he is slacking off. I co-worker of mine who came to our agency from a nursing home said they had a sign that said "they are not dying because they are not eating, they are not eating because they are dying. I believe that to be true and even though I still continue to encourage Charlie to eat, I do not insist.
Dazed, you are so right. That conversation will be replaced with "Who are you and why are your here?" or where is my wife? When I placed my husband I thought the loneliness and guilt would never end. Now that he is gone the guilt is over, but the loneliness is worse. I found out that "really gone" is worse than "just not at home". The only thing that gives me peace is that he is no longer suffering.
Don't worry about them starving to death, most of them start aspirating food and get pneumonia (which happens very quickly) or they just lose interest in food and drift off. Death from dementia does not appear to be a painful death for your loved one. In my experience it is more painful to the spouse/caregiver.
I think the whole dementia/caregiver experience changes your live forever. Hopefully, we come out on the other side intact.
Welcome to our family Suze. You will find yourself cared for like never before. We understand what you feel, unlike anywhere else. We will cry with you, laugh with you, complain with you and when needed toss you our infamous rope to hang onto.
Ckkgram, prayers are with you.
We must treasure every moment that we have with our loved ones. They are gone long before they leave this earth. The lonliness that starts with the dx continues to worsen as time and the disease progresses. Reach out to others and don't be afraid to ask for a hug. Hugs to all. S
Dazed, this morning my DH has asked me what is on the agenda today, over and over. Yesterday, I made reservations. This will happen again and again until he forgets that we are going. When we get there, he will continue asking when are we going home. I try so hard to answer gently each time he asks until I can change the subject.
maryd, I'm so glad someone else understands. Something that worked for me yesterday when he was repeating his questions over and over.....I said "Honey, you keep asking that question over and over because you forget you've asked it so let's change the subject". Saying this in a loving way, did not make him feel bad and we started talking about something else. What worked one day may not work another, though.
After DH repeats the same question about 4-5 times, and I've answered each one (hopefully in a loving way), he will say, "I've already asked you that, haven't I?" I tell him yes, but it doesn't matter because he can't remember. I also then change the subject.
This part is killing me. How can you have companionship when there are no reference points to talk about? Whatever I refer to, he doesn't remember. It makes for very non-stimulating conversation.
I TRY to treat the repetitive questions with humor. Every time he sees the commercial for vitamins that supposedly help memory, he asks if he should be taking them. I tell him - The answer is the same as it is every time you ask the question - you're taking the appropriate vitamins. We then laugh together - sometimes.
Yes, joang, you're so right "no reference points to talk about". When I mention someone or something, I then have to try to explain who/what I'm talking about. So frustrating.
Welcome Suze. I know what you mean about companionship and we also have no reference points left anymore.
The only answer I can see is to try and find and accept a new life step by step. That's hard to do or imagine when we're up to our necks in the hardships of giving this intensity of care. It's the only road though.
About TV. Watch things you've never watched or would never watch. I found I really don't like reality shows and I watched the Hindu hour which made me smile and I found I like watching golf. The courses and the quiet tone and the birds in the background are like a calm in the house. BTW - I also found out what Joan RIvers is doing these days. Selling jewellery on the shopping channel. I always remember her line "Am I smiling? I can't tell."
Quite often I find myself going to ask DH a question or mention something about a friend or event and I stop myself. I can't take having to explain everything in detail because by the time I have explained he has forgotten what was said in the first place!
Jean, you took the words right out of my mouth! I was about to say the same thing. I purposely don't bring up certain subjects(most subjects) because I know that I am going to spend the next several minutes explaining everything so why bother? Sometimes, if the subject is simple enough I will go ahead but even then he wants to ask questions and then ask more questions about the question he just asked. It gets to be annoying after a while so I just change the subject or go do something else.
WOW you Guys! Everything you said applies to my life (but it applies to all our lives, just at different times!) We were driving home from our weekend with the grandkids today & I so wanted to talk about different times that we have done certain things but then I realize that he wouldn't have a clue as to what I was refering to. When we wake up my DH always asks what what is on the agenda for the day. So I try to only tell him the first thing that we are doing. I have learned to NEVER tell him what we are doing in the future cuz that produces endless questons everyday until the specific event.
My husband is talking less, so the repetitive question thing is winding down. One thing I used to do, was make a game of it for myself and see how many different ways I could answer the same question. Didn't matter to him of course, none of it stuck! Took some of the drugery out of it for me.
I agree with what someone said above, one reason we are having less conversation is because I just don't bring many topics up. I recognize now that most of the time, the subject must be very simple for him to grasp it.
I never realized how much I would miss conversation. I find that we are going out to restaurants, (something we did a lot in the past), much more infrequently now. There is nothing to fill the conversational void with--it's not like I could take reading material--so it's easier to buy takeout food and eat at home. Cuts out the waiting in silence time.
Marilynn, I take my Kindle and sometimes a small paper with a sudoku on it. The e-readers are still pretty rare here so I get lots of curious glances and sometimes friendly questions, and I love showing people how it works. Dh is often content to sit for a while and watch the people or boats go by (depending on where we are).
I am fond of my iPhone for the very reasons cited. I can play Scrabble or other games, read anything that I also have on my Kindle, check Facebook, email, etc. So yes...it seems I've turned into one of those people who tunes out her companion and tunes into her electronic device! But, trust me...I'd stick that thing in my pocket, and return to a good, intelligent, two-way face to face conversation about ANYTHING in a flash. If such were available.
Jeanette - a couple weeks ago a transit driver in Portland lost his job after a passenger took a picture of him driving down the freeway while reading the kindle that was laying on the dash. Not good for the driver but great for the Kindle as it was on the news for days!
Hello Suze! So glad you found us. My way of handling the loneliness is home hobbies. When my DH was still at home I could put my laptop in my lap and pursue my genealogy, and still be with him. I had to give up painting and such because I never new when I would have to drop what I was doing, But it still a lonely life in limbo.
I am back after not being here for a couple of years. I guess I was in denial. Now I am really struggling - with the same problem, companionship. Dh is getting less and less relational - with everyone, not just me. I still have 5 kids at home (ds 20, dd19, dd14, dd11, dd11. We also have an older son (22) who is married.). I feel like the family is splitting apart. I need to sit down with at least the older two and talk with them about the changes that are occurring in dh that I was so close to I didn't see them. My dh is 67 on Friday, I'm 52 on Monday. He was diagnosed 2 1/2 years ago, but, as I look back, has had symptoms for a good 5 - 7 years. This is so hard..........
Martha P I'm glad you're back--not for the cirumstances but because there is help here. Many others will respond--if not tonight, in the morning. Joan has links on the home page which may help your kids too. The Dementias are wicked diseases which are not content to only harm our LO, but to destroy us, the caregivers, and the familial relationships. My DH will be 68 on the 19th, has Vascular Dementia and is well into Stage 6 of the decline. I count my caregiving for him from his Mental Breakdown in March 1988. Our daughter was 10. She grew up, went to college and moved to CA in 2001, 6 years before he was Diagnosed. However, all through those earlier years of caregiving I was straight with her about his illness and she did understand. I made it clear that we had to deal with it; we would do so respectfully, but we would not be disrespected by him because of it. She could refuse to wait on him--respectfully. She could be frustated, angry, what ever feelings events tiggered. That's reality. I also connected her with the Big Sisters program to provide her an outlet, just for her, away from the everyday interference his illness presened in our lives. Even now,with her in CA, I have her full support in my decisions for her Dad. Rght now it sounds as though you're being pulled in many directions as your DH requires more care, and your kids all need you in other ways. Ask questions. Share info. We are here to throw you a rope; answer a question (or try); share a laugh; dispense cyber hugs, etc.
Martha P, I didn't know you before you "left", so welcome back to the boards. I have no children left at home, so no advice to give there, but it must be so hard. I wish you strength. Joining this group -- about a year and a half ago -- made it much easier for me to cope. DH was stage 4ish then, now is a pretty solid 6. Things have gotten easier in many ways -- but of course it's just me and him.
Martha P, I have a 14 year old daughter still at home.(Also have four grown kids married and out of the house). I have been up front with her on all that is going on. And she has stepped up to the plate and has helped so much. If you do not open up to the younger ones they will make up in their own minds what is going on. The sooner you talk with them the better everyone will feel. They will see things in a new light. And they will understand so much more than you think. For the past few years, our DD thought her dad did not care about her. Now that she knows what is going on she sees it is his AZ that makes him the way he is. We got our DX in Feb. I am 51 and DH is 58. I wish you the best in all of this. It is not easy for the younger ones. I am so sorry you have this to deal with. Hugs, blue
Martha P. Welcome, I do not have any children at home, but I have 4 grandchildren close by, & while I know it isn't the same, they have seen their PopPop change in the past few years. Their Mom's (my daughters) haven't really told them anything except that PopPop is getting forgetfull & since they are young (all 10 & under) that is probably all they need to know now. Like the others said, we are here for you. Come back anytime & talk, vent, cry & share whatever you need to with us.....cuz we understand! Hugs to you.
Hi Suze, I empathize completely. I am 56, my wife is 59. We are, however, quite a way along in our journey. She is in stage 6/7 and neither speaks nor understands when I do. She is no company at all these days. It is more like dealing with a toddler prone to temper tantrums.
What you said is so true..no one knows what it is like with an AD patient at home ( or in a facility) but those of us who are in the situation. I think they feel that our lives are somehow normal when we are still able to go out running errands ( even those the LO used to do) so they do not get how difficult it gets and how some days we wonder why we even get up ourselves. I have a friend whose mother is in her 90s and has a few memory hiccups but does not have AD. They have round the clock in home care..the girls take care of getting mom to the doctor on days they are off from work, or work with the bills but other than that have fewer worries and a normal life. And they think they get it...what we deal with.
They have a spouse with whom they can take a trip, have a conversation, host a dinner party, go sight seeing, paint a room, garden anything they like. We might be able to get the LO to do a little bit of these things but they won't remember doing anything and we can't even go down memory late about a fabulous trip taken even a couple of years ago.
So very, very true. I had a friend recently state that when dh AD was announced at church - NO ONE got it except Dory. Dory has a dh with Parkinson's. She gets it. I am grateful my friend realizes she doesn't get it - and she still listens and cries with me. You all do that too, but from the heart of experience.