Today I had a brown angel come my way. So unexpected. He drives the 5000 gallon water truck, and we had a delivery to go in to our water catchment tank.
As the truck was noisily pulling in the driveway, Dado, got up from the outside table and went in to the bedroom to hide. This is so sad, he used to love to talk to the local guys any chance he got. And I KNEW, he stayed in the room for the half hour delivery, because he was ashamed.
As the man was rigging up the hoses and getting the pump going, he asked, "Where is Dado? We miss him working at Ace Hardware" I looked right in his lovely brown eyes, and said, "I am sorry if you did not hear, but he has Alzheimers, he cannot talk well, and that is why he is hiding inside"
To my amazement, this big brown guy, slowly dropped a few big tears, while looking right at me. He said, " My Mom just died of Az not long ago, I took care of her as it was too much for my Dad"
We talked about it all while the water pumped, and I told him when he left, "You know, my heart was especially sore this morning, and now, I feel so much nicer after talking to you"
He said, "Yes when someone makes you feel better, it makes your heart soft"
After he left, tears of relief and joy spread right through me, the good kind, the kind that refresh and renew the spirit.
I wish this for you Mary in Montana, that you feel the love coming to you, and that your heart gets soft enough to let it out. How I love my family here, though we all say to newcomers, we are sorry you have to be here, just think, how blessed we are to have each other. We may never have known such wonderful people.
All my love to each and every one of you, all of it. And the soft tears flow now.
Coco, you are such a sweetheart. You feel like my sister and my solemate. I was so tired yesterday. That always adds to my emotional strength issues. Last night was on the good side. You brought a few good tears with your kind words this morning. Thank you everyone for the support. Someone said in a different discussion that they have no support except for here. They are so right.
I have support but I always think that in their heart of heart they are so thankful that they aren't in my place. No one could have told me how dreadful az is. I would have thought I could do a better job. But, alas I am mortal and get tired to the bone and grumpy with the love of my life. Mary in Montana you and Coco have the most beautiful place to live. Look at all that beauty for me.
I remind myself often that there are probably as many nice people out there as there are those who are not. It's us that are different because when life hurts you very hard it does things to you and I'm not sure any amount of time ever fully erases that even if we fall in love again with someone new later.
When we meet someone with similar experience the bonds are instant because both understand what you must live through in order to really understand.
The struggle for the spouses ultimately I think is to have the sorrow, have the memories, have the anger, but learn not to paint everything with the brush we ourselves have been tortured by.
If Dado can conceive of hiding because he may feel ashamed (which really pulls the heart strings) , then perhaps he would understand a comment like being proud of him. Or how those fellows miss him. I'm sure you already do that.
This disease brings more than enough despair into our lives. Very few must face years of hardship in hopelessness but almost all of us do. That is psychologically a witch's brew as any psychiatrist will tell you.
Sooner or later post traumatic stress syndrome will become accepted as the price for many of sending our young men and women into battle. And sooner or later society will accept that caregiving loved one's with a fatal disease creates it's own syndromes.
It's hard to underestimate what a little help, understanding, or compassion can do at the right time or over estimate how much harder it is when we don't get any. That is the crux of Joan's board. Anyone in need can come here and they will likely find those things.
Coco...you just have a way of telling your little stories that makes it so clear what is happening in your life. Bless you and your Dado and thanks for sharing.
Coco Your story does make the heart soften and even though my loved one has passed I still feel for those who are still enduring everything this disease does to both them and their spouse. Those with an understanding heart are just our own personal angels who have already seen or are now seeing what the disease does to all involved. I pray for everyone here who has to endure this suffering on a daily basis and unfortunately the ending is always the same. Bless you all for all you do in the name of love. Hugs to all Bruce D *
We don't "fit in" to our old activities, and most familiar folks are absent from our lives now - My DH has a great deal of difficulty with movement - very slow, walks with cane, walker sometimes.
Because we are walking so slowly, people that are passing us in stores and on the sidewalk - coming and going - will make some type of pleasant greeting. Before, that didn't happen - we were all in a hurry on our way to whatever. Folks now will jump to open the door, help us getting bags into our carts, etc - all with much caring and friendliness.
I am with my DH 24/7 except when he is in Day Care. There are times when we are out that he gets very confused, stops, won't move - until "the light" comes back on. I just stay at his side - waiting for him to be ready to move on. People come up - I guess we look in distress - and ask if they can help.
This interaction with strangers makes the day a little brighter.
My breaking heart this morning goes out to Hospice who has been with me now for several weeks while they evaluate my dh. They not only have been evaluating my dh, but have given me their "soft heart" in helping me find the right place for my dh while I take 2 weeks of respite. They encouraged me to do this and have been by my side every step of the way. They will meet me this morning at the ALF where my dh will be spending the next two weeks while I will try to rest and get on firmer ground to be able to continue to keep him at home at least for a while longer.
As many of you know I am much older then my dh and the past two years of me being the only caregiver with no help from anyone except for the past several months when I hired my cleaning lady to sit with my dh for 4 hours every Wed. morning has taken its toll on me. I so badly need this time and I don't feel guilty at all except my dh does not understand at all why he has to go to "this place". He thinks he is just going for the day. Both his neuro and the hospice doctors have told him that this is necessary or I could become ill and that they will still be taking care of him if and when they are needed at the ALF. The hospice social worker and the hospice nurse will continue to see him at the ALF which makes me feel good because I will know they will be checking his chart and his care. They will meet me there today to talk to the ALF about him and his care.
I had planned on just one week of respite care but these professionals kept telling me to take two weeks. They said I would need one week to get rested and the next week I should do some fun things and/or things just for myself. I am either stupid or a coward or maybe both, but I don't know how I could have done all the paper work and coordinating putting him in this ALF without the help of hospice. I don't know what I expected, but you don't just go sign into a memory care unit at an ALF like you are signing into a hotel. You have to get all your things in order regarding his care, doctor's info, medication current, family members who are allowed to see him...who is allowed to do what and when, legal papers regarding his care.
Since my dh is under evaluation with hospice, their doctor will be the primary doctor. But, he also has a VA doctor and his private neuro and heart dr. A nurse from the ALF had to come to the house to evaluate him. People coming and going for the last week has been like a revolving door. I never in my wildest dreams thought this could be such an extensive procedure or maybe it is just because I am so tired.
I hope I can make it through this day without any major misstep.
WOW Judith! It does sound like a procedure. I hope you have a restful respite. I can't fathom having 2 weeks all to myself. Enjoy, enjoy, enjoy! Don't worry about your DH (I know, easier said than done), but it sounds like he will be well taken care of.
JudithKB we are just on our way to the doctor, his neurologist, and I saw this. You are very much in my heart and prayers, and oh how I wish one of us was there to have some fun with you. Sometimes it seems lousy that no one on this site lives close to me, and many of us, because we would be the only ones that could really understand and perhaps have a lovely time.
Hang on dear one!! Hugs and WARM thoughts coming your way, SOFT LOVE to you.
Coco..be sure and let us know what the dr. had to say about your dh.
Everything went very well with my dh at the SLF today. He did say to me..."these people here are really old"...Then I reminded him...I am really old too and he is getting really old.
He started to give me a little bit of a hard time about going before we left the house. I started crying and told him...he had to do this for me. I have no one to leave you with and I need rest and to attend to some business things and he did seem to understand that...which amazed me. And, he went willingly but with a sad look on his face.
I am looking forward to the next report from you Judith.Hope you had a real good nights sleep. And I hope he does too, it is so sad but so necessary.
Things went as expected at the Dr. visit, answers to questions:
What year is it? 1971 What month? November Where are we , what town is this? Vancouver.
He is feeling fairly well, and was fidgety on the drive but not over the top. It is as you all say, the same thing, the same progression, the same fear and hurt, and even the same knowing it is some kind of lesson. Doctor says he is in "middle stages", and wants us to try to up the Aricept again.
Honestly the worst thing for me personally, once a $$!!*(** again, is the callousness and coldness of people so called close to me. I just can't deal with it. OH God how I want to do the right thing, to not talk behind backs, to not let stupid cold comments make me want to scream. Either that, or truly I need to watch what kind of people I am around. It seems so STUPID STUPID that after all the good and progress and learning to love myself, that I would let selfish self centered jerks get me down.
Other than that, all is well. I have a new saying when people ask how I am, I say "relatively excellent"
And then, the title of this thread, softness. After I wrote the above, he came in my computer room/studio for the third time in half an hour, to say goodnight. And then I remembered something I had done the night before that really soothed him and put him to sleep.
I went in to his bed, and laid beside him , slowly stroking his forehead and scalp. (He has the smoothest fuzzy hair and smooth brown skin) Oh how great it is to see it puts him right to sleep, avoiding the tossing and turning for at least an hour.
Thank God for the grace to be humble, and truly loving. I know we are to not preach here, and of course I would not, but, if I did not believe in God at this point, I think I would just give up.
Coco, read your thread 5 days ago and haven't been able to comment. When I read it I cried, beautiful and thank you for sharing. and to Judith, bless you and get some much needed, needed rest.
Absolutely Coco, if I also didn't have God in the picture I would be lost. I don't care what anti God retoric we are exposed to at times. I know what I know.
awww...thanks you guys...thanks for bringing up this thread again. It is good to remember that kind angel that came that day, as there have not been too many angels lately.
But..there are a huge bunch on this board, with soft hearts and caring souls, and for this, I will ALWAYS remember, for the rest of this life.