Joan, I just find the sadness incapacitating(?sp). I am back to not being able to read and find myself wondering aimlessly around the apartment. I guess our new family problems have just drained my strength. I am trying hard to overcome this but you all know how hard it is.
We are living lives of mourning. I know I have to learn to live with this disease without continuing to mourn day after day. My therapist gave me a book on this subject at out last visit. I have yet to read it.
I call it " the black cloud" forever hanging over my head even at times that are supposed to be enjoyable such as evenings out with other people. I was out last night and should be feeling better this morning, instead here I am again indulging in self-pity, thinking about how the others' lives are so normal. You are not alone, Joan, in not being able to concentrate on reading. If I do try to read I get frustrated because I can't remember what I have read. The most I can do is the crossword puzzle in the weekend paper and that takes me all week.
Hi Inge, It was me who said I can't read. I went for about a year unable to read and then suddenly I was able to again. Now I can't concentrate. I just keep reading the same sentence over and over. I feel the same as you Inge, the black cloud. This morning I felt that the sadness was just deep in my bones. Talk about self-pity.
You know, sometimes we are entitled to some self-pity. Pity is a hard word with a negative connotation, but it's valid. You can say I feel concern, empathy, whatever, but there's no denying the loss. I've been thru this, and I understand what you are all going thru. And I know you'll all get thru it, even tho you may be screaming, "I don't want to get thru it, I just want my life back." And I also know that there are worse things--not many, maybe only one or two--but there are some people I know I would not trade my life for. Feel the same pity you'd feel for anyone else, comfort yourself, hug yourself, be kind and understanding of yourself. You deserve such things.
No matter how hard I try there are times the sadness overwhelms me. I find a good cry helps but it isn't always an option. If I'm with John or at work I can't give into it. It makes it difficult to function. I'm tired of pretending that things are ok. John thinks they are, he tells everyone he doesn't have a problem. Of course he doesn't, he doesn't remember. Friends try to tell me how I should be handling things and count by blessings. It isn't that easy when you see the one your love changing before your eyes and each day brings new challanges. I thank heaven I have this website to relate to and a great caregive counselor.
The book that my therapist recommended is Healing After Loss by Martha Whitmore Hickman. It is a book of daily meditations. It's on my list of things to do.
I feel a little(a Lot?) guilty. Everyone on this board has been so kind - but I do think I had anger. My husband has MCI and is 99% functioning. But I have to always be vigilant of the1% of what he might do. His symptoms are more like Picks disease than Alzheimers according to the neurologist and his memory is as not as bad as his sudden bad moods that sometimes go on for days and are only directed to me. That hurts as I try so hard to please him. I go to therapy and she discharged me telling me that I was doing so well coping. But, I did find out - by accident that I had been stuffing the anger and it was not good for ME. So I have a new therapist and have been working on "putting the ozygen mask on my face first before I try to take care of him " - you know like they tell you on the plane. I had been taking care of him first, trying to make him happy, trying to keep him from having the bad moods while I apparently was gasping for "air". I have learned that I can't do any of that. It didn't work, and isn't going to.But after my recognizing the hidden anger, I feel better, more focused, stronger - SAD for sure - but it is much easier without the anger. It is like a poison. Thank you for sharing and "listening".
faith&hope, I think that is what I do. It isn't anger so much with us anymore as depression. I am always trying to keep his crying, depression and fear at bay and it is exhausting. This despite hefty and growing amounts of anti-depressants. At least, thank God, the people at the memory clinic LISTEN and seem to really hear and care.
Jang - thank you for your reply.Thank goodness I have an understanding Psychiatrist - but managed care won't pay them for therapy anymore. This process is so much like a puzzle. Our neurologist - a woman - who specializes in Memory Disorders and does research is also very understanding and makes herself available. I am getting an education that I never knew I would need or want. Thank you.
A good book to read is "The Battlefield of the Mind" by Joyce Myers. I'm not sure how you guys feel about her personally, but I read the book last year when Robert was going through all the ECT treatments (when everyone said the only thing wrong with him was that he was just depressed). It really helped me alot during that time.
I didn't agree with everything she said but overcoming the sadness and depression (for those of us who have situational depression) has alot to do with changing how you talk to yourself and what thoughts you allow yourself to dwell on. It's a good book for retraining your thought processes.
Sadness...anger...hope...despair...optimism...gratitude and then back to sadness and bouncing thru all the emotions again. Sometimes I can get through the big things, like the neurologist appts. It's the little ones that make me cry. Like seeing my husband trying to eat tortilla chips with a fork.
I couldn't find any other post for this situation, but it does make me sad. My 9 year old granddaughter ask her mom not to sit her next to Grandpa anymore when we go out to eat. She said, she felt uncomfortable, because he is always poking or rubbing her hair. Bless her heart, she said, she loves grandpa & wishes he was like he was when she was in Kindergarten. She was always his favorite.
I've been extra sad the last little bit. DH is still not eating very well and I know that the way things are going his days are numbered. It really hurts that for the most part I'm having to "go it alone." I told a loved one the other day that they really needed to spend some time with him while they could. The answer I got was, "I just can't stand to see him this way." I wonder, HOW IN THE WORLD DO THEY THINK I FEEL? I have to "see" him this way every day, all day, 7 days a week. I'm the one who has to watch him as you would a toddler to make sure he is safe. I'm the one who has to feed him like you would a baby. I'm the one who has to keep him clean........No, I'm not yelling at you all. I'm just so sad right now. I'm hurting and there is not one to hold me. It's raining outside today and it's raining in my heart too. Gail
kadee - sorry your granddaughter is feeling this way. I would imagine the touching makes her feel uncomfortable and that is sad it has to happen. All you can do is hug her and tell her it is OK , that you understand. Right now her not feeling guilty about the request is very important.
Charlotte, You are so correct about her feeling guilty, she is a very sensitive little girl, loves her grandpa, but does feel uncomfortable with him poking & rubbing her hair all the time. My daughter-in-law, tried to explain it was his way of conversing with her, just like he head butts my son whenever he sees him. I just hope this won't be her lasting memory of grandpa.
The sadness hits at unexpected times. Probably because of the loneliness. I find I have to be totally flat with my DH. I have to handle everything calmly and like magic make it ok. Whatever breaks, whatever goes wrong with the children, whatever he spends, no reaction allowed. If I get upset, he gets angry and threatening. So I will continue working since I have to earn to pay the bills and continue feeling hurt and sad as he tears down my character and lets me know everyday that I don't exist in his mind except to take care of him.
I too am feeling sad, because I realize that the interaction with others here in the retirement facility where we live (independently) is not going well. We usually eat alone, but in the casual dining area, if someone asks, "May we sit here?" the answer is, of course, yes. I've tried to explain to DH that once you allow people to join you, it's rude to refuse to talk to them, to the point of open rudeness to those people he just doesn't like. I guess we'll just have to give up eating there on occasion, which is too bad, because that's where breakfast is served, and it's really good. He doesn't like people who carry on interesting conversations, laugh, or are just generally having a good time. One woman has ignored us for three months, following an extremely bad outburst at the time of a shingles vaccination day. He was very agitated at the long wait, kept jumping up to check on things, and finally she said something curt to him. This was before he started on Seroquel. Anyway, the other night we were eating dinner in the casual dining area overlooking the pool and she and her husband approached, very friendly, and asked if they could join us. I didn't know how to say no, but I guess I should have? She tried to include DH in the conversation by asking a question about his daughter's cat and he snapped, "I don't know," then turned away and talked to her husband the rest of the meal. Why was I embarrassed when it wasn't my fault and everyone here knows he's moderate stage AD? My sadness comes from the increasing social isolation. And this was a guy who was loved by all who knew him.
Pris is your DH capable of staying in home while you go to breakfast? and then bring him something back fromt he restaurant? i do believe you need to have the socliazation and interactions with the others moreso than DH. sometimes they are jealous of the smiles and good times we tend to have talking to others and will use these ways to interrupt our fun. even now my own DH early stage 7 drowns me out on the phone when it rings talking in the background. not sure if he likes me laughing and talking to someone else:) its all about them as we well know they tend to absorb like sponges the 24/7 attentions -can you socialize with another couple in your home? ask them over for drinks or lunch where DH may be more in his environment? you need to just explain that the outbursts are part of the disease and if they can ignore it its best. i do hope things get better and you can find a couple who will understand the situation -divvi
PrisR- I posted my discussion before reading this topic but looks like i could have put it here. These dreary rainy days must be taking a toll on everyone. At water aerobics this AM others were commenting on being blue too. Yes social get togethers are hard. People are uncomfortable and I get tired of them assuming I want to monopolise [sp] the talking. You can't enjoy other people even. These situations are just unbearable because we long for some kind of normalcy and it is just not there. Try as I might sadness does get me down too. Oh to just run away for a while! Sweet Pea
For awhile I was going down alone for breakfast, explaining to him that I needed time to visit with "the girls" and this was ok for awhile, but then the usual shadowing began and he came along. He doesn't even like being there, but loves the blueberry pancakes. We eat dinner in the regular dining room and get a table for two, as the d.r. mgr. and hostesses all know he doesn't do well with others eating with us. That's ok with me, but I need my time with other people. I go to water aerobics three times a week when it's not raining and really like that time in the pool. When things are going really well I get overly happy and forget that the other shoe will drop any time. Then when it drops I get depressed and so it's back to the new reality.
At our retirement Inn for dinner we always sit with someone else - usually 2 women since there are only 4 other couples here. The staff assigns us and it is with someone different each day. Everyone knows that DW does not enter into the conversation, so don't try to talk to her. Fortunately, she seems to be happy just listening to the conversation.
Kadee, I share your pain. Today Dylan confided to his therapist that he misses his alone time with his Papa. I am going to set up something for just the 3 of us.
PrisR - you said: I've tried to explain to DH that once you allow people to join you, it's rude to refuse to talk to them, to the point of open rudeness to those people he just doesn't like.
Why does he have to talk with people? I would change and tell him it is OK if he doesn't want to visit, but you will visit with the people. Let him stare out the window or daydream or whatever. If he doesn't want to talk - OK. It is better than trying to push him into talking and then have him be rude. If people know he has AD they will not push it. If need be, make up cards to hand to them that explains he is best if not spoken to unless he speaks first, but you would love to visit.
I guess I said it wrong. What I told him was that there was an obligation to be civil even to people you don't like if you're seated together. Verbal rudeness is not good. People are used to his not talking, but to say nasty things to people is disheartening and will isolate us even further.