joan yesterday I had a strange conversation with my DW. She looked at me with tears in her eyes and asked me if I wanted to go on without her. I nearly cried myself to see the woman I have been with for 50 years suffering from this dreadful disease asking me such a question. She has always been very unselfish and cares about others so much. I tried to reassure her that everything we have been thru in our life and survived it all has been training for what we will endure in the future. We didn't come all this way to separate just because of a disease that has no cure and only gets worse as time goes on. No one knows when or how they will die but what they do in the time they have is what really counts. just venting hope you understand regards bruce
What a precious lady, to think this way...in some way wanting you to go on living and asking you if you would rather that. Her generous and loving nature comes out in her question. The answer you gave her to her sad question gave her the support and security she needs to know she will be loved all the way for always. Bless you both.
I kind of know what you are talking about and how you felt because my DH wanted me to ask our apartment manager if I would still be able to live in this apartment if he died. We live in a senior apartment complex and the age limit is 55. He is 72 and I am 52. When I told my manager what he said I started to cry. I told her "Can you believe that in is limited brain capacity that he would think to ask about that." Even with this disease he was thinking of me for that period of time. This is really hard to watch our LO's go through but we are going through it too, or at least that is what it feels like.
Bruce, that's not venting, that's being honest. What a lovely sentiment when you said " No one knows when or how they will die but what they do in the time they have is what really counts." These are words to live by, indeed!
All of the comments above are so true. It is amazing when our lo's can come out of their fog long enough to be concerned about us. When that happens here I simply hug him and thank him. And Bruce if that is venting, then I would hate to see you being honest......I probably could not stand it....lol......
Following is an email I sent to another sister about the latest encounter with my sister. She let my son and his family live in her apartment, not paying rent although there were times they wanted to and she refused. I knew something like this would happen.
""Had another round with sister. It started with me nicely asking her what color she wanted the room Myra was in painted. That is the room with the dark blue ceiling and baby blue walls. They got the dark blue on the sides which does looks horrible. One day she likes the dark blue the next she doesn't. Today it is fine, just the dark blue that got on the sides. Anyway when asked the color she wanted she said she didn't know what her son had painted it. I told her it doesn't matter = what color does she want. She said she doesn't know she would need to call her son.
This has led to this arguing over one thing or another. She was saying the frig was so dirty she should just throw it out. I looked inside and it looks clean to me. The only thing in there is rust that was there when they moved in and a plastic bag frozen/stuck in the ice maker (which doesn't work). When I asked her to show me where it was dirty, she told me to open my eyes. Art couldn't see anything either. She walked away but later brought a drawer out that evidently a couple little pieces of something had fallen off the rag when she was cleaning and didn't see it. She also does not remember when the kids moved in it was dirty and even had a drawer full of her son's medicine.
Now the wood floors. They were scratched when the kids moved in (which she denies) and naturally have more from them moving furniture around. She seems to want the kids to refinish the floors - that is what I sense. I asked why if she is going to keep renting it, why worry. (note: they floors are more painted than stained. Stain would not chip) I can't wait to see what she wants to do about the shower. It has that slate on it and it will not clean. I really do not think it was sealed before it was ever used because it looked flat when Sheldon left.
I told her I told CJ he needs to walk through with her and write every thing down she wants done and have both sign it so there is a paper trail. Boy, she blew up on that idea. She says she already told CJ. I said 'ya, but you forget. If it is written down there is no argument over what has to be done and how. She said she would have to hire someone to come in and walk thru in case she misses something but won't sign anything.
I wish I had money for three reasons: I would pay to have a professional come in and do it her satisfaction, to pay all the rent they never did, and to get away permanently from here. She is upset cause we want to help the kids get the place to her liking. She thinks they need to do it themselves. They need to learn they can't live like pigs and not have to clean up when they leave. (those aren't her exact words just a summation of how I heard her speak). She says she tried to teach dil how to clean up and be neater but she didn't learn so now she will. She says the pickyness comes from all the years of living in military housing.
I never wanted the kids to live here and tried over the years to get her to kick them out cause they were taking advantage of her generosity. But she would not because of the little ones. Now, what I feared would happen is. First my daughter, now with CJ.
Art wants to go in and work on the place but if he did that she would just get angry at me for doing what the kids should be doing. Yes they should, but he wants to help and needs something to do to feel useful. We have not helped yet, but want to get this done so this book can be closed.
BG, I told her I chatted with you about her memory problems and what is going on -that went over horribly. Said what business is it of yours or something like that. So if the next time you call she mentions it or acts differently,, you will know why. I need someone to chat with I can't chat with her anymore. I am torn between being here to watch out for her and needing to get away from who she has become. Her kids don't seem to care about her or not enough to visit often. In fact, after her stroke her DIL told me her son was glad we were her to watch out for her. My interpretation: Glad you are there so I don't have to take time out of my life to check on or worry about her.
I was explaining she has Mild cognitive impairment but not amnesic like Art cause she remembers eventually. That it can clear up or stay like she is. She said she has nothing like Art, yet she keeps joking with Art that she has Alzheimer's just like him. She says the doctor has told her it could take 8 months to get her memory back. What the neurologist told her was that the clot that is effecting her memory may move so it comes back to normal, or it could not. The 8 months is her energy level. If Dr. xx told her the memory would definitely come back, I feel sorry. There is no guarantee. I truly hope it does because if she refuses to do what needs to be done like write things down that she says, it could be bad with any new renter. Personally I hope it does because I want her back. But strokes change people so she may always stay this way.
Enough venting. I am sure you didn't want to hear all this. Sorry for laying it on you, but I need someone else to know besides R (our youngest brother that lives here). I feel so sorry for him being here and having to deal with it all. I am sure it is more than he bargained for.
Add on: According to my son, she upset my DIL friend that was helping her clean when my sister started ranting about the paint, which my sister denied ever saying anything today to my DIL. We gave up our dream of workamping to be here to help her when she was caring for her invalid husband in 2003. We had left in 2005 because he son moved into the apartment that she had built for him. He bailed on her after about 6 months and we came back. Our son moved in so we left for another workamper job in 2008 after her husband died but we came back after 5 months. I guess I am resenting her attitude since we gave up precious time,3 years or so, we could have been following our dream. When we felt free to leave Art was diagnosed and our lives changed forever.
I am wiped out. I want to leave but if we had not been here when she had her stroke, how many more hours would she have laid on the floor before our brother came home and found her?
Just a bit of a vent. My husband has declined a bit in the last few months.
Constantly asking if it's okay to do something -- I don't know why, he's going to do it anyway.
Short term memory really bad -- constantly repeating questions/comments; not remembering that we just came back from the mall and wanting to know when we are going to go.
But the thing that has been driving me crazy the last couple of weeks is that he keeps changing his clothes. First it was putting his shoes on and then his wallet in his pocket. Two minutes later he would take them off and a bit later do it all over again. Over and over. Today he has changed his jeans to shorts and back again at least 10 times. He has gone through 5 or 6 shirts and each time he has been putting them in the hamper. I have been taking them out of the hamper and putting them away. No matter what I say he says he needs to change his clothes. I know it's really a small thing but I feel like crying right now as this shows there is no comprehension of what is actually going on.
I can definitely relate to the clothes thing. I have the same thing going on. It's been a very warm week and I have been telling him to take off his ski jacket because it's so hot. Five minutes later, it's back on again. Also, he changes his shirts constantly. It is really sad!
Charlotte, as long as you take care of your sister they'll let you do it. I believe that if you were NOT there,...she'd get the help she needs from her children.
The young ones would NEVER say, LET ME do it, Aunt charlotte...you need your rest. Am I right about that? Poor sweet Charlotte, take care of yourself....you're going to end up like Phranque if you don't....with three or more people leaning on you for help.
My hb changes clothes all the time, too. Wears 4 shirts at a time; everytime he changes, he puts clothes in hamper. I, too, take them out, give them a shake and hang them up... That way he won't run out of shirts in a day. Hmm maybe I should take all shirts except for 4 out of his closet. Sunday he had a brown & a black sock on. I asked if he'd exchange the brown for a black to match his slacks. "No, don't bother me with it." So I didn't, and we went to church. I'm picking my battles, and trying to get less upset. Saturday was a BIG one though--or more like Sunday night. Two debit cards were missing from my wallet on Saturday. One I'd used an hour before I realized it was "now" missing. Dr. appt cards were missing from their usual post on a kitchen cupboard door. I looked everywhere for the debit cards, then called to freeze them. Sunday night hb was sitting on bed going through things in his wallet when I walked up to give him his meds. THERE IN HIS HOT LITTLE HANDS were the debit cards and the dr appt cards. Of course, he could tell me nothing about how they got there and kept insisting they were his and he needed them. I "won" that round. THAT (debit cards) is scary because he'd been in the car w/me and adult granddaughter. We didn't notice his taking them. Guess I'll put one card in a wee bag and pin it to my bra as women in the old days did w/cash--I've been told.
I'm venting about the nursing home. I placed my husband in an alzheimers care unit. Memorial day they found him lying on the floor and he had urinated all over. He had swollen legs and feet and they did not know if it was his constant pacing or his congestive heart failure or because he has kidney disease. So they said they were sending him to the emergency room. The emergency room ran a bunch of tests and said he has the same problems that they diagnosed before, which we are not treating aggressively except with medications because of the dementia. So they sent him back to the nursing home. The next day the nursing home called me and said he was being combative again. They had sent him to the hospital once before for this. In the hospital they checked him out and got his meds straight and sent him back that time. So since they said he was combative they sent him to the emergency room again. The emergency room checked him out again and sent him back to the nursing home. I went to talk to the administrator about what was going on and she said with his health problems if he gets combative they would send him to the hospital because they don't know whats causing the problem. I went up stairs to see him and they had him setting in a wheel chair with a aide watching him. The nurse was calling the hospital again to transport him back and the hospital said they would admit him. His psych doctor looked at him and all the doctors and nurses said he behaves fine there. The pysch doctor called the nursing home and said something must be triggering this. They would not even work with her to try to find the trigger. They moved my husband back and forth five times in two days. Then the nurse at the nursing home said I said it was ok to dope him up like a zombie. I told the doctor that is not even what we discussed. The nurse at the home asked me about hospice care in case the time should come and I told her to keep him comfortable with no pain or tube feeding. It seems they don't want to deal with it and they don't have enough staff for one on one care. When I placed him I asked if they knew how to deal with combativeness. They assured me they knew. Yea Right! I am looking for another place. There is a good one 30 miles away so the social worker said at the hospital. There is one in town that has a waiting list. There is also a catholic one. We shall see. If any of you put your spouse in a home keep a journal. Go there at different times. Write down where your spouse was at, what they were doing, also wearing. Write down there mood also. It might help later if there are problems. There is one nurse at the home that stated she didn't have any problems with him. Also label all there clothes well before you bring them there as they will lose them.His watch is missing and can't be found. Now if I move him I will have to pick up all his clothes and tv and move them to the new home. I thought once I placed him things would be better. Good luck with that. If he goes to the hospital there is papers to sign. If there is drugs to be administered there is papers to sign. I was going to try to find work. Good luck with keeping a job with all this rigamarole going on. I guess I vented for now.
Porkhck, I cringed when I read your post because it's all too common, and we don't need this on top of all we handle. Yes, a transfer is a good idea. I have to be vigilant at the care facility my husband is in and am waiting for a transfer out. There's no question in my mind that my husband would be dead by now if I hadn't eventually stepped in with the staff and administration. Pity those patients who have no one to look out for them. Best of luck.
Well here is my vent.... I just returned from 20 days away. Went to Iceland with middle girl to help work on the summer houses they own and rent. So while it was a change of scene it was not a Roman Holiday but we had some fun anyway.Youngest girl came to stay for the first 2 weeks and his brother came for the last part. I left comprehensive instructions for them, how to work the front loader machines, what not to use on the stove, how to fill the pill boxes, where and when the doctors appointments might be ( there were just a couple) and told them not to worry too much about housekeeping and to have some fun...For the most part the house was in good shape BUT I had to go on a treasure hunt for dishes etc, then found out that the one thing I stressed which was a blood test DH needed for appointments this week and one next week were completely overlooked.. Then on top of this, brother didn't lock the car when he took DH to the cardiologist and his handicap placard was stolen so I have spent the past 2 days running around to the DMV for paperwork and to get the new placard. There is no such thing as respite time when you come back to this.
Husband is still in hospital. He's getting delirious again. They have him in a chair by the nurses station. He seems to sleep for a couple of minutes and then starts wanting to get up. The only problem is he's to weak. When he is more alert he tries to tear the hospital gown off. I talked to a different social worker at the hospital and she said she did not think if I move him to another nursing home/care unit that things would change. As soon as he gets combative they will send him back to the hospital. I had told her to see if the resident psych doctor could adjust his medicine and see if that works before booting him back to the hospital. Also I told her to tell them not to turn him into a zombie for their convenience. Just get him to where he is not combative. I thought they had a special area in the home where they could do that. Apparently not. His regular psychiatrist who is affiliated with the hospital told me that every time they are moved it makes them more confused. You would think they would have a better system by now. I called the alzheimers association and they were no help either. They couldn't really give me an answer. With this disease and the health care system you would think they would have found a better way.
There is, indeed, no other way, no "better" way. No way. It just is. No one knows what they're doing because no one knows much about this disease, no matter how much "studying" is done. There is NO CURE, no "breakthroughs", no real hope. (what's called a Miracle is what is needed) Involvement with Alz. is a sick, sick place to be, patient or otherwise.
Porthck, I'm sorry that you are continuing to have problems and no clear solution in sight, as of yet. Hang in there, you will find a way. It sounds to me as if you are doing a stellar job keeping on top of the present situation and guarding your husband's best interests. For what it's worth, my experience is that those Care Facilities run by religious orders seem to care more for the human being that is our Alzheimer's afflicted mate. Here in Vancouver, Canada, Catholic facilities have a long waiting list, as more and more people want this kind of care for their spouses. I have my husband on waiting list for the Jewish Care Facility (an approx. 5 month wait). I've been there and talked to their Social Worker, and their approach is entirely different to the corporate-owned one my husband is in now. The Louis Brier Hospital show obvious care about people: it is part of their culture. This is the story I heard: when Louis Brier first offered to donate funds for this care facility, those on the Board wanted to restrict it to Jewish people only. He said that he wanted it to be open to everyone, or he wouldn't put up the money. I think your approach is a good one, as is your communication with the Social Worker. There really are some fine people out there who do care and will help (not as many as I would like, of course!), and I want you not to give up hope. Just keep plugging away, like the duck on the surface of the pond who looks calm and placid, but who is paddling away like hell beneath the surface. Sending love and best wishes.
06/09/10 Hubby was in hospital since 06/01. Now he went back to nursing home. I had to buy him a pair of compression socks for 120.00 as medicare and medicaid won't pay for them. Told the nursing home not to lose them and I will wash them myself. Told them to watch them if he goes back to hospital as I'm sure he will. He has been shipped there four times since 05/11/10 his first day at the home. This may sound ludicrous but if the hospital or nursing home loses those socks I'll scream. They prescribed them because he has edema from congestive heart failure and kidney disease. Also his blood pressure dropped to 40/28 and 70/28. These socks may help with his blood pressure dropping. When he got back to the nursing home they started checking out for bruises, marks, blood pressure etc. He pinched the nurses hand. The hospital has him om depakote and other drugs as needed. I hope he won't get combative again. They are also giving him 8mg of melatonin for sleep as he doesn't want to sleep. In the hospital they gave him some magnetic letters to play with but he was putting them in his mouth. Then they gave him some pvc pipes with elbows to keep him occupied. They had him in this chair with a tray in front of it. It looked like a high chair. It's hard to see a strong independent husband playing around with tinker toys. Some one said I should get him some of those big lego pieces to keep him occupied. I think he gets bored. I am just emotionally drained from all this. I'm trying not to worry. I hate to say it but the only way things will get better is if there is a miracle cure or he passes. He has so many health problems that we are not treating aggressively because of the dementia. I adopted a cat. Maybe I feel a little guilty because he never liked cats. He had to go to a home and now a cat lives here. I'm 55 and not working. I'm getting along financially for now but I was hoping to retire in 12 years. The only thing that bothers me is I have no medical insurance. I know I'm not the only one in this boat.
porkhck i hope you marked those socks with his name on the soles! that way they cant just walk off. i hope he does better and you enjoy your new companion cat. divvi
porkhck - if you have a VA facility anywhere near you, they sell great compression socks. I wear them to keep my feet from swelling as does my sister. they are only 5.99 a pair. What a ripoff - $120.00. I don't know where you live, but if they loose this pair let me know and I will send you a pair to check out.
Yes there are two va facilitys within 30 miles. She also said you can buy them on the internet for around 50.00. I live in southeast wisconsin. I marked those socks with permanent marker. Also I talked to the director of the unit and they are to take them off at night and put them in a locked draw by the nurses station. I also told them I would wash them myself as they only last about six months and should be washed by hand and air dryed. They also told me to not use woolite on them as it breaks down the fibers of what ever they are made of. I had to get them in a hurry so I went ahead and signed for them. She put it through medicare but she said they don't pay for them anymore. They did in 09 but not in 10. So I signed a paper that if they don't pay I would.
My husband's worn a compression stocking for approximately seventy years. Yes. Not a typo. He has permanent chronic phlebitis and cellulitis in this one leg. I've given up trying to put them on him now that he's not walking except a tiny bit. Just raise his legs when he's sitting in a chair. ABSOLUTELY your husband should not wear them to bed. And frankly, don't believe the hand washing of them. You can; and putting them in a dryer shrinks them, but no matter what they will wear out in six months or so. I never washed them more than once a week.
But that is absolutely too much to pay. Look at supporthosestore.com for good prices if you can't find a medical pharmacy (not one in a hospital) around there.
06/14 Husband went back to home on 06/09. On 6/12 they called me and said he was bleeding from the rectum. They sent him to the emergency room and they said it wasn't serious and back to the nursing home he went. Before they sent him back to the nursing home they gave him a shot of geodon as he was combative. For two days he was semi sleeping and drooling. Yesterday my daughter and I went to the home and the door to his room was shut. As I pushed open the door two aides were in there and they sounded like they were yelling at him. He had soiled his diaper. The one said she had a weak stomache and I also heard her talking stern to other patients. I think she's in the wrong job. Today we went there and they had him by the nurses station and he was awake and I was able to give him a candy bar and shave him. Before he was booted back to the hospital I was able to cut his hair. I feel better when these two aides are on duty as I don't trust the other ones. This unit is 7,802.00 per month. Thank God for medicaid who could afford that. Even with the fancy price I'm not impressed. This disease sucks and alzheimers care units and nursing homes suck.
I would be reporting those 2 aides to the Administrator or Director of Well Being. You are exactly correct if she has a weak stomach, she is in the wrong job.
I definitely would report those two aides to the Administrator. But be prepared for retaliation.
Several years ago, we oversaw the care of Claude's brother who was in a nursing home. We were in and out constantly, they never knew when we were coming. Everything was fine until one Sunday. We stopped by and all the aides were sitting in the day room, talking and smoking. Room lights were on and the patients were being ignored.
Monday morning we reported this to the Director. She said she would take care of it. Yeah, right!!!!! Nothing was done and Henry got less care than before. We immediately moved him to the other nursing home in town. ( It was a small town, only two nursing homes.) I heard a few months later, that it was sold as they were on the verge of losing their accreditation.
Today has sucked!! I have never found joy in cooking and cleaning or housework. I have done it over the years because it was expected. When we were first married, hb cooked the first 6 months until I got brave enough to cook. Of course, it was only 2 days a week since he worked swing shift. Since then the only time he 'cooked' was BBQ. We have not had a BBQ for a while so he no longer does that. Last night I told him the toilet needs cleaned because with his loose poop he makes a mess in the toilet bowl. He did nothing which did not surprise me.
Tonight I just did not feel like fixing anything but he needs to eat. He is not happy with what I am happy to snack on - veggies, almonds, toast and PB, etc. He likes a meal. I was washing dishes complaining about how I hate doing it and cooking, shopping, cleaning, vacuuming, etc. I told him I didn't mind doing it when we had a house cause he had the outside to take care of even though there was much more inside to do. Since we have been in the motorhome he has very little to do outside and won't even help inside except maybe vacuuming once a month! No reaction at all except to say don't fix anything - I can have a sandwich. The meat was cooking, the beans were heating and veggies being cleaned already.
I wanted to scream at him, tell him how I despise him and if I could I would take off, leave him to take care of himself. I know from others here it will only get worse - him not doing anything. I want to think if he had not been this way most of our marriage, I may feel different. Right now I want to run away too.
Charlotte, Ease up on yourself...we all want to run away. MY DH used to do all sorts of things in the house and outside too. He will say, " Is there anything I can do to help" well there is plenty but the sad fact is he is not able to do much because of his vascular disease in his legs and feet which keep him from walking well and he just does not have the strength now. I have never despised my DH but I have got resentful at times when he could have done things but didn't and that was mostly in the past 5 years when I thought I was the one having the problems staying focused and getting things done, not realizing who was moving in and not paying rent! Just last week I got so mad at all of this I took a piece of cardboard out and nearly beat the huge green waste can to death with it. It is the sameness of this disease for us, the never ending nothing new but more work and worry about everything,,money, wet clothes, dirty house, things need fixing and we don't have enough time for it all even with help. Then of course we break down with aches and pains and life is not fair at all. It gets depressing when we see our neighbors still able to get out and go for walks with their other half, work in the yard with their mom who is 80umpteen and in good health while we deal with all of this..the frustration just builds to a boiling point even under the best of circumstances.
Last night I told him I wished we had a good marriage, that every since his affair 25 years ago we have just existed together. We have gone along pretending we have a happy marriage. If we had had a good marriage this journey would be easier for me. He just sat silent with a look on his face like he was thinking he had done all he could to change things but truth is he did squat. He did what it took to get me to stay knowing I did not want to face the embarrassment of divorce and failure.
I was telling him that in time we will have to move into an apartment. He wanted to know why we can't stay in the motorhome. I tried to give light reasons but they didn't work. I finally told him that because as he progresses in this disease, if I have to help him bath or he become incontinent I can't do it in the motorhome. I told him if we are lucky he will not become incontinent until he needs to go into a facility. I told him he only has to deal with the present, I have to face and plan for the reality of the future. I hated being so blunt, but I guess with my mood and his insistence in knowing why, I was.
Charlotte, I wish I knew the magic words to make you feel better. I do pray that you will make peace with the present and be able to look at the future and make some plans to look forward to. Love you....
Charlotte, Even tho our marriage was very good, I can certainly understand how you feel. Even with having a good marriage, there were a couple of times that I felt hate. I ashamed to admit that now. Since I don't have all the stress 24/7 , I can't believe that I ever felt that way. I give you all the credit in the world for taking care of him after what you went thru in your marriage.We had a motor home once. Not big enough when things get worse.
Charlotte, you know, I think I had a good marriage, however with what I am going through now all memories of a good marriage delude me. Some days are goo, some days are bad & some days are good, bad, good, bad etc. today is one of those days.
Well for me, when I am on the way to pick up the meds or to take him to a doctor appointment or just out of a bite, it hits me it was he who used to do the driving and on a road trip,even if not far, he would teach geology, or history, comment on the ocean or " I bet that used to be the old road" fronting the now busy freeways... Now if I look at the pictures in our albums, my mind wanders back to those days and the dreadful changes are painful. It is one thing to look back and see when we were fitter or he had a full head of hair and then to realize that while he LOOKS pretty darn good for his age, there is nothing and some days I can actually talk to him and his mind is so far off...there is just nothing, nothing but the wt of all the chores to do, the help that is gone, the people who drift off, and the full realization of what alone is..we are alone in our world now and they are somewhere off in theirs yet we sit in the same family room with all that emptiness. It is a wonder that we CGs are not certifiable for a looney bin all our own.
Some days I am a certified looney. I am beginning to worry. I have been reading caregivers have a 60% chance of developing this disease and over weight people with large waists are over 60% of dying and at 82 I'll bet I have a good chance of dying. Now that is depressing. Eat desert first, and as the song goes "Live as if you are dying". Anybody want to sky dive?
Thank you everyone. The afternoon has gone a little better. Venting, solitaire, and a walk on the beach helped. I walked in the cold ocean while tenderfoot walked on the sand! Then I just warmed up chili for dinner along with fresh veggies. Nothing like the crunch of a good piece of celery!!
He spent yesterday taking everything out of his cabinet inside that had tools, nuts, bolts, etc of every kind in it. Some of it is still on the floor. Today he worked on the 6 bays out of 8 underneath that are full of more tools - most he will never use but he won't part with. I discovered when he was getting things ready to leave my sister's, he loaded all the tools that were his from the shop into the bays too. We probably have triplets or more of many tools.
Charlotte, today has been a terrible day, so I can sympathize with you. When things change so quickly, it's difficult to cope. All week DH was pretty good, even had some empathy for me yesterday since I didn't feel very well. I think the stress of what's been going on here since my trip has kind of gotten to me. But, we had some pleasant days this week, even went out to dinner one evening. And, then, out of the blue, he got mad at me this morning about something I don't want to talk about and when I asked him if he was coming down to dinner, he began saying things I KNOW he doesn't really mean. I couldn't even get a word in. He told me "He can't stand it anymore. I should leave. I answered him back. I know I shouldn't have. It escalated. He was "in my face" and screaming. I gues I have to up the Seroquel.... I'm feeling very low today. Days like this make me feel as though I won't be able to handle it when it gets even worse. I really thought I would be able to do this. These last couple of weeks make me think I won't be able to. Turning the other cheek is hard to do.... I hope tomorrow is better. I'm glad this day is almost over.
Bev, I hope today was better for you. It was for me. Mostly because I am making myself get out to walk and visit with others in the park. I can look back and think what set me off was the internet is really crappy here and I was so frustrated and mad that I couldn't get on. I play Farmville on Facebook and had crops that needed harvested. You only have so long or they die. I know it is stupid, but raising rank in the game by farming is one joy I have. I am finding the internet is good every other day and late at night. I guess the internet is more of an escape than I want to admit!
Charlotte, just a practical point about the cooking. Do you have enought fridge/freezer space to cook for leftovers? Make a huge pot of chili and freeze enough for several meals? Or boil a lot of potatoes that can be fried up with simple meats?
The inestimable Andrew brought us soup again tonight before going up to put L. down. He has been such a support, I can't imagine life without him now. L. had been alternately very alert, answering questions about his name, where he'd gone to school, etc, for the new hospice nurse - and combative, with the hospice CNA, then when Andrew came to put him to bed tonight he played with him, tossing a pillow back and forth, laughing and happy. It changes in a breath.
And my leg has been so painful the last few days that I am discouraged and unable to do much.
Thanks, guys. I have an appointment with a third ortho - this one does arthroscopy surgery - and if HE says I need a knee replacement I guess I have to go with it. I have constant discomfort when walking, even with knee brace, good shoes, cane.
This morning l. said, as Andrew was putting him back in bed after washing up, that he needed to go to the bathroom. He pooped on the way, on the pot, after being cleaned up, and then all the way back into the bedroom, with Andrew going along behind and wiping him, to keep the Depends clean. He had been a bit constipated, but he made up for lost time today. The nurse was here, and everyone was laughing. I could too - I wasn't doing the cleanup!
Thanks, Charlotte. The days are up and down. I never know what each day will bring, as all of you know. Today was not a good day, seems like the bad days are slowly replacing the good ones we had been experiencing. I feel pretty low right now and hope tomorrow will be better.
Bev i hope you take action now with meds and his dr before it gets any worse. in your face is never a good sign. and yes it can escalate out of the blue with no provocation. hope your day is better. divvi