Everyone is telling me that when my DH goes into LTC that I must build a life of my own alone. How do you do that but still have them in your life somehow? He will still be alive and calling and I will visit. How do I take control of my whole life after being in a completely sharing marriage. We did everything together and discussed everything. We were one!! Now it will be two separate but included worlds. I just don't know how this will work. He is here but not here. How can I not include him in my decisions for my life when he is no longer part of it. He called me last night from respite and was so up beat. He is building a great life for himself without me and I am so happy for him. The difference is that everything is there for him. All these people that will make sure he is entertained and fed and washed and has companionship. Now for me I will be moving to a new, strange city with no one to help me start this new life. I will have to do it on my own and it scares the hell out of me. There is no reason to stay where we live now as we just moved here and I don't know anyone here either. He has always been there right beside me doing things together. If it was a new place we had just moved to it was never lonesome because he was there. This is so different and scary. His geriatric nurse said that I must not include him in my decisions for my own home once he goes into LTC, that I must do it without him as he has so settle in to LTC and I agree but again, what about me? There is no one to help the caregiver settle in to their new life alone and as so many of us know friends and family disappeared long ago and we are pretty much alone to start this new life, and at the age most of us are at, well it is hard. Most groups are already formed and have been for years, so it is hard to join in. Couples don't always want that single person around, maybe dangerous. So what do we do? I am really lost and the time for him to go is getting closer and he will be in respite most of the waiting time now.
reinventing a life as a single is so much harder on us than them I suspect. he will be well cared for thru the remainder of his life. we on the other hand must find new friends, hobbies or things that make life worth living again after a lifetime of being a partner. very scary yes. the uncertainty is surely a factor and most of us are at an age where we assume we will not have another relationship. but some do and it works out so very well and they are happy. once your spouse is in his new home and starts his new life alone, you must do the same. it will change in the way you deal with his care but for yourself, trying to find the best way to move on is in of course your best interest. church groups, Alzheimer groups, charity groups, exercise classes, are all ways of meeting new friends. yes its true, once you are in a single position, coupled folks usually do not invite and want only couples as friendships. and its true many see a single lady as a threat, be it true or not. there are many here who have gone before you and will have wisdom and good advice. wishing you the best jazzy. take deep breaths and make lists of things you would like to get done. divvi
It's wrenching to go through such foreign changes. He's not going to a resort even though he'll be 'entertained' and fed. None of this is going to feel the way it does now where he's high functioning but he's not himself underneath and you're lost because this huge new change is upon you.
Looking back I will never know where my wife's changing behaviour could be said to be the disease or her affected by the disease. She had it and it affected her long before there was any hint that she was sick.
When a person starts puking on the floor because they don't feel good it's easy to accept the person is sick and even though they are themselves they aren't 'normal'. But even here in AD it is hard for people to be as clear about mental diseases. Your husband is not himself because he has such a disease.
Part of the hardship for spouses in AD is that there is often a period like this where we charge them with responsibility still even as we see they're behaving in strange ways. I was very hurt by some of my wife's behaviour early and it was hard for me to forgive until her disease took so much away (still outwardly normal sounding) that it was clear it was there earlier too. I found letters she meant to give to me and notes she made which she tucked into a drawer. I didn't read them. They all started with asking herself why she couldn't just tell me she was wrong and what it was doing to her inside. I kept those in case one day I might want to read them since they're to me.
I'll never read them though because they hurt too much and because I accept that even though she smelled the same, and sounded the same, and she was competent - she was in the disease and no court would convict her so I won't either.
That's not how any of this feels and we really are living through our spouses behaviour now and life is ripping open choices we all have to face much earlier for you. I'm sorry about that. I've seen people who are moving to a new city for a great job more stressed out than you are though.
I'm sorry Jazzy. It's scary for me too even now to think about my own future or where I might live and what I might do. Or getting too sick to take care of myself even with normal sicknesses we might get.
You have every right to react to these big things and you don't have to make decisions immediately. Maybe a bit more time to come to grips with what's happening is the first thing you should decide. In other words give yourself a few months to just get a bit more used to this before trying to answer the questions?
It takes a long time, patience, and a willingness to just try some things.
You won't achieve a sense of "normality" (whatever that is,) quickly, but you'll be able to appreciate some things you didn't have time for before, and nourish yourself through the bad moments.
You really do have to be a little self-indulgent, in the sense that this is, inarguably, a tough transition and you need coddling.
Find classes or workshops or activities that interest you. Do them. Drink tea, take a bath, do other nice things when you're low.
Jazzy - wish I could give you some words of wisdom but I am going through the same thing myself, without the move, and I am also wondering what this next chapter will look like. Stay strong.
I found wives looked at me as a threat. Even before my husband died I was more comfortable with widows or single women. I wasn't even permitted to join our local solo club while I was still married-with my husband at end stage in a facility. OMG-was I going to snatch up the one man in the group! Being on your own isn't a bad thing once you get over the shock. I could finally do or not do whatever I liked. Learning to do all the things my husband used to do was challenging and rewarding. I learned to do home repairs and bought my first car by my self. Give yourself a chance to try new things. You might surprise yourself with new found talents and abilities.
Good advice. I think each of us are different and what is comfortable for one is not for someone else. I agree with blue daze that I felt wives perceived me as a threat. I think that is normal for most wives. I felt like I was freed from jail and actually after almost 4 years, I still feel a special "freedom" when I get in my car alone and drive down the road. I was a caregiver for many years for both my husband and my mother.
I enjoy going to the library and just sitting and reading a while. I love going through a drive-through and getting iced coffee or tea and maybe fries - and parking and sitting in my car with my iPad. I love traveling when I can find someone to go with me. I find that it is hard to "get someone to go with me". Around here the widows I know seem to be homebodies and are not interested in broadening their horizons. I enjoy my little raised bed gardens and my flower garden. I enjoy eating in my recliner. I enjoy eating and sleeping when I want to and where I want to. Now, mind you I enjoyed my life before AD much more than being alone now, but I chose to live in the present and try new things and meet new people. There is no going back. Make a list of things you enjoy or think you would enjoy - then do some of them. It is all up to you.
It's easy for people to give freely their advice, so here is mine. I believe that you will need time to adjust and it may take a long time, but you will adjust. We are all so different and so are our circumstances. Don't push yourself. You are dealing, and have been for along time, with many life changing situations. You have placed your life on the back burner. Hobbies...yeah, there are great along with church and socials, but just go easy. Don't pressure yourself. Time is a healer on many heartaches.
Yes, it is very scary. When I was 42 I lost my husband to an auto accident. I won't go into the details as it is still very painful, but he laid comatose (closed brain injuries) for almost a year. I did move on....and now once again I am facing another brain disorder . I will move on. Life will continue. It won't be easy....yes, it's very scary, but we are overcomers and we must survive.
For me, my husband's final hospitalization, then to rehab, then to ALF was only a brief time. There was no peace in any of that for me. I know there are others here who are coping with longer (and all are longer than what happened for my husband) time in placement.
To be honest, I have not come along as far as I hoped and expected. I can cite emotional exhaustion as the primary reason. I had hoped to move and have not come close to that yet. I designed a WRAP for myself- technically called a Wellness Recovery Action Plan- but for me I call it Well-being....
I try to make a positive step every day. Sometimes yes, sometimes not so much, and sometimes not at all.
I was told the same thing bluedaze* mentioned about being a threat....no, I don't want anyone's husband....I really like being alone and don't think I want another husband. (period on that).
Thanks for all you wonderful advise. DH has been in respite since Thursday a.m. And has called me three times to tell me how wonderful his life is there. How do I build my own life when he is calling all the time? I am not supposed to visit him when he is in respite so I don't but these calls just make me realize that after he is in there he will continue to call and I don't think I can tell him how difficult they are for me. He just has lost all his filters and there is no reasoning with him. I have to find some way to get some peace of mind for me or I will never settle down to this new life I am supposed to build. This disease is so one sided and there is nothing caregivers can do but put up with all the upsets to our lives. He is high functioning but his memory is going down hill and his behaviour is to much for me. I have made a bucket list for me and they are all small things that I hope I can take on. Things like, Tai Chi Chih and a course in Journeying. They are both quite relaxing so hopefully that will help. I pick him up Monday a.m. And I wish I didn't have to. He goes back on the 16th until the 24 th. maybe there will be a bed by then.
Dear Jazzy, it does seem like you are having more than your share of problems with your husband, and I'm sorry that you have to go through this. The one thing I am sure of is that you will come through safely. I have sensed that about you since the beginning. The only advice I can offer from my own experience is to take one day at a time. You can manage one day. Some days are better than others. Some not. And circumstances change, blessings happen, in ways we would never expect. God bless.
I wonder about the phone calls if they aren't a form of control and punishment in his mind. I going to check up on you and then I'm going to rub it in that I am having a great time here and I don't when I'm at home....stuff like that.
I know where hubby will probably be placed....not holding my breath on any of this with all the changes and ups and downs the last few months....that he can have his own phone in his room. NOT going to happen! He would be calling me many times every day and checking up on me and the control BS would still be happening. Once he's gone I will start building my new life. I'll make sure he has good care and I won't abandon him but I need to get back to the living, not existing and being controlled by this disease.
A friend just gave me a blast for not thinking of me. She thinks he is trying to manipulate me from there. Maybe he is, but how do you know? As I said he is high function still but for behaviour and memory so he Is just wanting me out of control. He still needs to be boss. This disease is so strange in how it affect them and it is hard to know what is the old him or the disease him. Once he is there for good I will have to set some ground rules pretty quick. Amber, I wish I was as strong as you sound.
Jazzy - I don't know how "strong" I'm being. I just remember that from the beginning of this site that the one thing everyone advised other members was "Don't let this disease take 2 victims". I have taken these words of wisdom to heart.
When hubby says vile things to me I know it is the disease that is talking not my hubby. The phone calls you are receiving, it's the disease that is calling not your hubby. It's really tough sometimes to remind ourselves of this and you just want to lash out and let him have it but what's the point they don't remember what just happened. Stay strong, we will get through this the light is at the end of the tunnel....see it coming!
I know it's the disease and it hard to just not say anything and I am trying. It's not easy and it sure takes a toll when you keep it all inside. I'm trying hard to get it all out somewhere some how. I have been doing a huge amount of screaming and crying while I am alone here this week end. I am getting good at imagining him standing in front of me and he is healthy again so I can rant at him. Nutty right??
Jazzy, I am sorry you are hurting ((hugs)) We are all so different and we find different ways to forge onward. The only thing I have experience with is what I feel and went through. For me, it was never about getting on with life without Lynn. He is still very much here, I still love him deeply. I visit with him every day not out of duty but simply because he is still the love of my life. He is still able to express his love for me and I realize that has a huge impact.
Your situation is pretty unique Jazzy. He is still high functioning and wanted to be placed. I can imagine this has hurt you as well. I myself do not believe he has the mental capacity to be trying to manipulate your life from afar. Even high functioning, he is still sick. If it were me I would try to give the benefit of the doubt and try to look at it as he is calling you because you have always been so close, you are his anchor. Of course where he is high functioning one never knows? But still, try if you can Jazzy to not jump to the negativity, it just sucks the life out of us.
You can not be available when he calls though Jazzy, or just don't answer every time he calls. As time goes by and you transition and adjust, you will find what works best for you. I too have sensed some things about you through your postings... you have a gentle heart Jazzy, you will make it through this. You are stronger than you may realize, but we know strength when we see it, and I see it shining in you. My heart goes out to you ((Hugs))
You are an angel of caring and mercy for him Jazzy, look deep inside and you will see that you have done your best. So now, keep that up, and do your best, for you.
I agree with Nikki. And the tears don't stop and missing them doesn't stop even when we come all the way around this dementia journey and feel strong within ourselves again.
As Nikki said everyone and every couple is different. That doesn't change the intensity of our involvement and it doesn't change the intensity of our feelings pushed into changes we hate are happening.
I had the sweetest girl who everybody loved and was successful in business but always remained first and foremost my sincere friend. I never truly understood until my father passed and I watched my mother suffer his loss so terribly even though they were such a tempestuous couple for so long; that life and the binding of relationships doesn't just live in my cozy little viewpoint.
I also have insight into nothingness in relationships. I know numerous couples that have varying degrees of that where everything is fine because nobody would dare do something out of bounds because you just don't do that; as a result the raw vitality of life is safely kept away.
They're all what they are the way every rock you see is different. It just is that way. There's nothing to learn unless we mean to impose our own values on others and surely there's something more useful to do than that.
When life hits us, hit it back.
Jazzy, your friend is right about your husband I think. But you did say he couldn't stand the idea that (as I read it) he's not in control of his life. Inside him the dementia is working and there is zero possibility that it isn't having an affect right now. How much is debatable but never will be determined. What's happening is raw and powerful. That's why it feels this way. You're not doing anything wrong I can see so I don't think you're being nutty.
I see it more that when the tornado is ripping at the roof discussing style points is what's nutty. I'm sorry. And that goes to everyone in these storms.
Right on guys, he is the love of my life and he still knows it. He is trying to do what is best for us by going in to LTC because, even though he knows my love for him, he is unable to express that love for me anymore. He is always so angry and frustrated with me and nasty and so kind and loving to others. I know very well that I will visit as often as I can get there and answer all, well I may let a few go to voice mail, I know it is the disease but as you all know, we keeping hoping it isn't. It has been the hardest thing to hear that I should build a life of my own and I am afraid I will not be able to do that. I may be able to choose activities that I can do without him, but not my own life as it is still ours. I guess I just find it hard to see him being do nice to others and not me. I know it's the disease.he is helping the volunteers to care for other residence and everyone loves him. This is so strange, not what I thought Dementia is like. His Dr.'s are just beyond themselves with his behaviour patterns. He is all over the place. It may not be so good the next time he goes to respite. He may show this other Kevan, the nasty one. He comes out more often now.
Thanks everyone. You don't know how much you helped me today.
Jazzy, I have no advice to offer - our situations are so very different, as you know. I have not encountered the angry outbursts that you have had to endure, and on the other hand the love my dH and I share is also different, and not as deep as the one you and Kevan share. But I am thinking about you and hoping that you will find some peace soon.
DH came home from respite. He was a good boy while he was there but that didn't last long. Bossy know it all is back in full form. Long sad face! No smiles! NO HUG AND KiSSES! NOT ONE!
He ate every meal they gave him but he keeps telling me that he is not hungry, leave me alone? I sure hope that room becomes available very soon!
I have thought quite a bit about your comments since last night, and I really think I need to print them off and carry them in my pocket, so I can keep my self reminded of what I need to do for me and for him. Thanks so much
Jazzy, when he goes back in can you arrange that there NOT be an easily available phone? Don't let HIM know you've arranged it, just get them to agree to remove it before he moves in. Reading your posts, it reminds me of when kids go to camp .. hello Mudder, hello Fadda.. You are going to have to make a life for yourself sometime and the sooner the better! I know that's hard to hear but again and again you're going to hear it here. There IS an "AFTER" After two years, a move, a trip abroad, and a full schedule of events taking place in my retirement village, I have more than enough on my plate. Of course I miss my husband, but he had been gone so long before he died...
As someone who easily gets 70+ phone calls a day from my wife, getting calls can be disturbing but also beyond their control. See if he either cannot be given access to a phone or if his phone can be programmed to not make outgoing calls (the phone might be necessary for him to contact help internally). Look into blocking calls from his number if they distress you. I also set my cell to give a distinctive ring when my wife calls.
paulc - did you say 70+ A DAY! ohmygawd! Honestly, how do we all survive this stuff???
Jazzy, if it helps at all, just say the word and I will be glad to drive to Brockville to go out for tea or lunch or whatever you feel like. I know it's not much but it's something. I have no advice on how to build a new life - we just aren't there yet and so I have no experience to share. Thinking of you and hoping it goes smoothly.
Jazzy - you are still in limbo, not in a place to start a future. Until he is permanently placed you will not be in that position. I do hope that bed becomes available sooner rather than later. In the meantime, try to not worry about the future - you are still where it is one day at a time.
I was sitting in bed with my lap top this morning and it is really quiet and I thought in a few months he will probably be gone and then it hit me. Then what? What are you going to do and even though I say I am getting mentally prepared and putting a plan together I just don't think you can until you are there staring it right in the face.
Feed back from others that have place their love ones. Did the plan you thought you had pan out or did you go in a different direction?
It has been a month not quite what I expected. A few unplanned trips to ALF. Much more time on the phone. A feeling of the separation not what I was expecting. But still, I feel like a weight has been lifted from my chest. People note that I am more relaxed. Not doing some things I expected to do by now.
It is going on 3 weeks since I placed him. I am trying to figure out what I feel. I do know that I am much kinder and gentler since placing him. The frustration and anger have gone. I feel like a 900 pound weight has been lifted. I have to pay out of pocket for about a month until I get on Medicaid. He cannot do anything and is now urinating in waste baskets. I was determined now to let the disease take me down too and placing him is what I had to do to save myself. Yes I miss him but for me I think placement is just another step to help me accept that he will not be with me. Also it is forcing me to come to terms with losing his social security and to really be on my own financially as well as emotionally. He is adjusting and so am I. It just takes time and change is never easy
I placed my DH 3.5 months ago. I had several ideas of what I'd do when I was free of the daily caregiving (take college courses, learn to play guitar are at the top of my list). I haven't started either of those things and most days I accomplish nothing but spending time with him at the ALF. He is less anxious there so it is pleasant to be there and I need to be with him while I still have that option.
I've always known that I was not very self motivated, hence could never work from home. But I cannot focus on anything at all. If I happen to go outside to water plants or get the mail, my spirits immediately lift but mostly I forget that is an option. Some days I'm very sad and grieving, then I have days when I feel more centered. I'm giving myself time to get my equilibrium back. I guess I should start practicing some self discipline!
Jazzy, I have to agree with not answering all his calls. Set a time that you will be avail, (bedtime,lunch,etc) and let it go to voicemail/answering machine etc the other times. With my Dh's numerous hospitalizations, I have had to do this to keep my sanity. The staff on the unit know how to contact me if there is an emergency. I felt I was being pulled in a thousand directions when I tired to answer each and every call. Hugs and prayers to you.
Fiona68, in October it will be a year since I've placed my DH (I can't believe Ir’s been that long!) & the way you explained your life & your days...........well I could have written it. I also thought that I would have so much more time to do things that I put off while he was here & I was dealing with all the things that go alone with having him home, but I found out that the days just seem to fly by. I go & see him almost everyday (I am fortunate that he is only 10 minutes away). I am also not very self motivated. I have many things that I should do (declutter my house, do yard work, write thank you notes to my friends & the list goes on!), but most days I have ZERO motivation. So I get up, do my morning devotions, & just putz (Midwest word for putter!) around until I go to the Veterans Home.
Like you said “Some days I'm very sad and grieving, then I have days when I feel more centered.” Well for some reason today I woke up with a bit of motivation, so I am going to take advantage of it & get some really important things done!
So my dear Fiona, I know exactly how you feel. (((HUGS))) to you!
Elaine, thanks for the hugs. It is one of the things I miss most - hugs. When I try to hug my DH nowadays, he pulls away like I've got 'girl cooties'. It is rather funny, but sometimes I feel close to accosting strangers, just to get a hug from someone. :)
Fiona68 and ElaineH, I can join your group, have the exact same feelings. I thought I would not go every day to NH when he was placed but can't stay away, just have to go and be sure he is taken good care of. He does hug me most times when I go. I feed him one meal a day,he eats at a table with 3 women and they tell him he is so lucky I come and take such good care of him,he can't speak much but will tell them,yes,she takes good care. I can't seem to get motivated to do anything but play with my cats.Hopefully it will change for all of us and we can get on with our lives.