It's getting harder to see the humour in the silly things you do It's getting harder to remember what we used to be It's getting harder not to lose my patience It's getting harder to accept this path as my lot in life It's getting harder not to hear your voice anymore It's getting harder to make every decision It's getting harder to not resent those who have turned away It's getting harder not to think of everything that's been lost It's getting harder to think of everything that will no longer be It's getting harder to stop the memories running down my cheeks It's getting harder to look to the future and see nothing It's getting harder to think of saying goodbye to you It's getting harder to see what this disease has done to you, to us
I hear your pain, been there, and want you to know the you will get to that light at the end of the tunnel and you will come out into the sun light again. Will you be changed....absolutely! But you will survive.
29scorpio - this is pretty much how I've been feeling lately. Although I think I'm adjusting to things, it really is getting harder in many ways.
I'm going to try to copy & paste this to one of my boards on Pinterest - not sure it will work (especially since I'm not very good at that sort of thing). Hope that is okay with you. If not, let me know & I will remove it (if I can make it work in the first place).
This describes me completely. I thought I was turning into a monster, but realize we all go through this "harder" life. I sincerely hope that it gets "easier" at some point as I feel my mind and body won't hold out.
Well said 29scorpio but does it ever get easier! When Lisa was diagnosed the neurologist said the good thing is she knows what is happening, and the bad thing is she knows what is happening. Will it get any easier when she doesn't know what is happening. I am loosing my patience and I don't want to. I need a break and keep trying to reason with Lisa into accepting that why do I keep trying to reason, useless. I keep getting stressed and upset about things that are not life threatening but really bother me, like using the dish cloth to go around the house killing bugs and wiping up everything in sight then doing dishes with it. I know she cannot help it but also know I am not handling it right, try different tactics but bottom line just need a break so I have more resilience and patience.
I am working on getting some time but have to not be upfront or truthful with her to get it. Anybody out there will it be any easier when she doesn't know what is going on I feel that time is getting close.
Rona, my heart goes out to you. I believe the stage that you are in is the most difficult. They seem to understand and be the person we knew, but then reality shows us how impaired they are. In my case, at some point I stopped trying to explain to my DH and just took matters into my own hands. He would not understand that I needed to get away because he didn't know understand that he was impaired. Even if they do understand (or make us believe they do), they are losing the ability to reason. After a certain point, I never tried to be honest and make my husband understand reasons for what I needed to do. I lied to him (therapeutic fibbing we like to call it). It was easier, he bought what I told him, and no feelings were hurt.
I hired someone to come in during the days when I worked to "help do projects that I just cannot get to - and she'll make you lunch while she's here". He was fine once he realized she'd go bowling, golfing, out to lunch, and shopping at thrift stores with him.
I'm not sure it gets easier when they don't understand what's happening to them; they get more frightened, sometimes delusional, suspicious, and needy. I'm not sure of your situation, if you work outside of the home or if you're retired, but we all need a break from the day-to-day caregiving, so that we can continue the fight. If you can get someone scheduled to spend time with her now, she will learn to trust others in her life as her care needs increase. Best of luck to you.
My goodness, our lives are so different and yet so similar but the constant is STRESS. Each of you has given each of us so much help. We really need breaks. A cave where we can go and leave everything we are going through at the entrance while we decompress.
I have a cousin who has been living with and fighting leukaemia for about thirty years. His wife has told me she can't imagine the life we live as, even though there are times when it was bad, they were still able to go out to dinner, go camping in the mountains, travel. She is in awe of dementia care givers and how they survive this life, sometimes for twenty years with their partner not knowing who they are or caring about anything.
It is getting harder and we sure need strength to keep going don't we.
Yes we do need that strength Jazzy and fiona68 thank you for the comments. Even though it is hard when I read what others are going through I know I am not alone and know there are others worse off.
I need to stop asking permission and just do what I feel needs to be done that is a hard transition for me.
The world is shrinking but we are continuing. We are retired Lisa 59 and I am just turing 65 we are lucky in that we have had a number of retired years together to travel and enjoy life. We still travel but every trip I always wonder if this will be the last as each one gets more difficult. However I keep pushing and Lisa is a trouper she trys hard but there just isn't much left to try with. Talked to friends yesterday and they have been talking about what to do for my birthday. Good friends and they continue to include us Lisa' enjoys the get togethers usually at least 6 of us but she no longer can really participate just sits on the fringe. But they are good with her we are lucky.
We have also gone south the last two winters in our motorhome and met wonderful people and stayed in touch even travelling together. Have always been up front about Lisa and I am always amazed about how good and supportive people have been. Even though I feel stressed and know I need time to be able to continue I still feel we are lucky.
So what am I saying this is awful the world is shrinking, I am loosing my wife she is slowly leaving me but I am trying to hang on to her for as long as I can. It is getting harder, I am stressed and I need help, but I still feel we are lucky compared to many. Thank you all for the support.
Rona, My DH too knew exactly what was happening until the very end. My doctor told me the same thing that it is good he knows what is going on but that fact can also be a negative. I kept waiting to see if he would not know what was going on but it never happened. He told me once that he knew he was done and that he was dying. He was very matter of fact. All of the above posts contain good advice. You will eventually give up trying to reason with her because you will eventually see it is pointless. Fiona 68 is correct, you will need to take matters into your own hands and make the tough decisions and not try to get her to agree. It sounds like you have good supportive friends and that is a definite blessing. We did not have that so much because by the time he became ill most of the friends had vanished and I had been unable to keep up relationships due to his caregiving. Have you considered a respite? It helped me a lot to get away from it for a weekend here and there.
Thanks co2 yes I have thought of things but not followed through. I know what I have to do I just have to do it. I think I have been trying to run away from it trying to keep us busy but that is getting harder as lisa's safe place is at home and that is where she wants to be.
We have supportive friends problem is none live close by so Nobody in the community where we live. We moved here over 5 years ago to help out with Lisa's parents, both who ended up with dementia and both gone now. By the time we moved here unknown to us Lisa was already well on her way with alz we just thought it was stress. At this stage of the game I cannot see us moving that would be too disruptive. We have a cabin about and hour and half away with good friends there. But now even going back and forth to the cabin has become difficult. Fine when we are there especially if others around but the process of getting ready and getting there is difficult.
I have talked with care worker and need to do another assessment, apparently last one out of date, so that she can qualify for a day program. This would be great I never followed up before as we went away and I was still trying to reason with her. Last assessment last year it was agreed I need help so what do they think she is going to be better now?
I want to start with this then talk about maybe getting an overnight here and there.
Rona, Yes there is a huge difference in thinking about what you have to do and actually doing it. Big difference. As she progresses, your world will become smaller and smaller which will necessitate you getting respite or some relief from it for your own mental and emotional health. Any decision that you make is for your best interest although our minds trick us into thinking it is for them. Here we did not have to qualify for day programs but I know it is different in every state. I tried that for a while but it was a good distance away and had to take and pick up (much like taking a child to nursery school). Since I work from home, that became another chore for me and he did not seem to care one way or the other if he went. I tried bus transportation but he could not manage the money and I was worrying all the time so I quit that. It is oh so very difficult. You will feel better if you can at least make one small step towards getting some help--making a phone call, having someone come to the house to see how it goes while you are there--anything. I had a caregiver come to the house and take him grocery shopping. I would give her a list and since he loved shopping it was enjoyable for him and I had a couple hours of freedom. God bless.
I hear you about knowing what we have to do, & actually doing it. I've been avoiding it, probably for far too long. Lately, I am starting to at least gather information, phone numbers, etc.....now to act!!
It is overwhelming to me, & I suppose I can't make myself believe that we have reached a point where things are changing & in the near future, some steps need to be taken...it's a difficult, hurtful thing to realize.
Dan has never realized what is going on (at least he hasn't admitted it to me). I guess that's been good for him, but not so much for me. I can't reason with him, so I'll just have to do what needs to be done & hope it's right.
Mim, YOU have to make all the decisions now, because he just can't. I, personally, kept in mind what my DH was before all this happened. In the end it was SO difficult, but he could not help what was happening about the loss of control of his body functions. If he could understand it, imagine how devastated that would made him feel, and love him through all of it. Easy for me to say now, but it's just not that important. So glad that it was something that I coped with and let him feel it was no big deal. Wishing you the best ...