Another nice day. The morning and early afternoon was cloudy but the sun came out for a while this afternoon. Took a day off from the beach with granddaughter - let her just play at the playground and sandpile. She was happy. Our DISH DVR is going on the blink so she is not always able to watch her kids programing. Weird - it will just start going from station to station. They will send a new one but will have to wait until we move on Tuesday. She is starting to get on hb's nerves. I have tried to keep her occupied and away from him the last couple days. What drives him bonkers the most is her constantly asking for food. This goes back to when they lived at my sister's and she had her grazing all the time. I am trying to put at least 2 hours between eating which she doesn't like. We plan to take her back on Wednesday, so hope hb and me can hold out!!
the wi-fi here is driving me crazy. Now that I have a taste of what satellite internet is (HughesNet) I will not get it. It is going down all the time. In fact, I would say I average about 2 hours total a day when I am able to get online and stay online.
Another hot, humid,no rain day here. I am so ready for FALL! DH asked last night if we were going to church - I always tell him whatever he wants to do, so he said we'd go. Upon awakening this morning and getting his first cup of coffee (and telling me again that I make the best coffee in the world!), he said he was too weak to go to church. I said okay. I don't push that at all - he doesn't/can't follow the service and doesn't get anything out of it anyway. But I did miss our breakfast with friends this morning - my chance to talk "normal"! LOL
It's a lazy day, DH is playing golf on his laptop, I'm on the website - getting educated some more! Thanks to all of you! Hope you have a peaceful day.
The day was nice until I noticed the thread about where God is in this journey was deleted. I find that a place where the most intimate subjects from sex toys to heatache can be discussed, there are those that get offended when someone questions God. I have found that if it is comments by the 'older ones' on this site it is acceptable. I still am at a loss as to why those who are not interested in the turmoil that many of us face in reference to God can not simply avoid the thread. There are threads I do not read because they do not interest me at this time. I get offended by the some of the jokes that are posted as I see them as a bit vulgar but I do not ask for them to be deleted because some enjoy them. I have learned to just ignore the jokes thread altogether.
I know Joan has her policy. If someone was trying to push their point of view on others (which I have interpreted some non-believers postings) then I could see deleting it. But this was a subject that many here struggle with and referring us to just one member here I also find offensive.
Charlotte, The thread you are mentioning, Where Is God In This Journey, was pulled by Joan because it is one of the topics ( religion and politics) that she restricts on this forum. No one was pushing any one in any direction with the two or three posts that were made and there was no heated discussion going on. It was pulled or redirected as a matter of policy only.
In my own frame of mind, I question what lesson am I to be learning from this journey. It could be many things to different people, some may learn patience, some may have their own faith, whatever it is, deepened. Some of us learn or try to learn to be more understanding of those who don't realize what we are dealing with. I posted that thought on that thread and in Joan's estimation, it was worth discussing for the benefit of newer members here on her site. But as she said, HER policy is to prohibit discussions of religion or politics for the obvious reasons...they can get heated.
Charlotte, I agree "I find that a place where the most intimate subjects from sex toys to heartache can be discussed, there are those that get offended when someone questions God." I don't care for some of the jokes that are posted as I see them as a bit vulgar, also. And as you said, we can always skip threads or comments. I look for ones that will be helpful on my journey or make me smile. For me, that's the purpose of the blog.
I also agree it's Joan's site; so she can set the policy.
Comments made in the past were hurtful to me. I was made to feel less worthy because I am not of a mainstream faith. I chose to just bite my tongue-but I do agree with Joan.
We are in for another hot and humid week here in PA after a week or so of nice weather. Two great things happened to me today. One is that one of the aides at the nursing home was telling me about how the ambulance driver who drove Charlie for his CT scan commented when he brought him back to the nursing home that Charlie was quite agitated when they arrived at the hospital and how quickly he calmed down when I walked up and let him know that I was there. Makes me believe that I DO make a difference in his life. The other was that two of his brothers and a sister came up from the Lousiville KY area to visit for the weekend. Yesterday, even though I felt that Charlie was aware that they were there, he did not show much reaction. Today he actually reached out and hugged his brother. Later, sitting out in the gazebo, he made eye contact with the same brother and even though not a word was spoken by either one the look said more than words can ever say. Made my day.
Charlotte, You have more courage than I do. I almost wrote the exact same feelings that you posted. I was so happy to find a place where I could voice my struggles & what helps me through this journey, only to be told that I can't say anything about my faith. Well my faith is one of the main things that helps me. I'm getting tired of people saying they are offended by people talking about God. Well I am offended when I'm not able to talk about God. However, I also agree that it's Joan's site & she can make the rules, so I will abide by them. I just wanted to add my 2 cents.
I understand that people's faith is a major part of who they are. I think that's precisely why Joan is wise to not allow discussions of religion. We don't all have the same faith, and it is easy to hurt someone else when we seem to be advocating for our own and disparaging theirs. It was a surprise to me to learn that bluedaze was hurt by some of the religious comments here. I don't want to lose her or anyone else because of what any of us might say about religion.
Although the topic of politics does not come up nearly as often as that of religion, I often think that my political views, about which I feel very strongly, are in the minority here. There have been many times that I have had to restrain myself from telling someone what I thought about their views. I am thankful that Joan also does not allow discussions of politics. Otherwise I would end up hurting someone else's feelings or leaving. I don't want that.
We got a news flash tonight. First a wee bit of history..daughter no 1 is a geologist in Cape Town SA. She will be there 3 years this Dec. She would love to return to the US and we would love for her to be home BUT geology positions are not easy to come by and with our encon as it is, we have told her to research things carefully before giving up a good paying job there. Then tonight daughter no 2 and her hubby called to share with us their plans which will be a move to Iceland before the new year. They are in VA, he is a contractor both general and landscape and for the past 2.5 years work has just fallen off and they face losing their farm. But over the years, they have invested in property in Iceland and can weather the storm there. That leaves the youngest who is also on the east coast. While they all were at one time on the East Coast, they were able to come out this way..the funny part is how they all were urging us to sell out here and move there so if we needed help they would be there. Thank God we didn't do that! But what it does mean is that they will see far less of their dad than otherwise they would and it leaves me with even less potential for relief. Like someone said before,,today is the best it is ever going to be...seems like we are always getting hung out to dry over something. It all makes me feel just lost.
Does anyone remember the book, "When Bad Things Happen to Good People"? The idea is that sometimes things just happen and it's not God's Will. It was written by a rabbi whose son died from a rare disease. As for AD, I really don't believe there's some higher reason that we're going through this. Just rotten luck.
Thanks, Imohr*. I did not sleep well..actually haven't for several days since I first read this announcement on facebook before the call last night. And I read the ALF thread just a minute ago and the costs are so depressing. My elder care lawyer suggested divorce in order to qualify my dh for medical..referred me to a family law attorney..there has to be some other way. with his military pay, disability and SS he makes a good income. Add my inheritance to the mix ( which was in the trust and to be sole and spe property but CA doesn't recognize such a thing) and we make way too much or have too much in assets so the attorney's best solution is divorce and tried to paint a pretty picture of you are still there and it is only on paper etc but I would stand to lose benefits down the road that we paid thousands for especially in terms of Survivor Benefit Program in the military which has the goal of providing the widow a % of the base pay when the sponsor passes away...we have paid into that for some 30 years now! I am so discouraged I could cry..things seem so hopeless.
NO NO NO to the divorce!!!!! You have the wrong lawyer. You DO NOT NEED to divorce to get benefits. Get a new lawyer - CELA - Certified Elder Law Attorney - and read the thread on divorcing to save assets.
This lawyer is a certified elder care attorney. She suggested we consider this but said it is out of her realm ( family law) and referred me to one as she knows I don't like this solution and she said that perhaps a legal seperation would be in order.. What has happened is our trust has a problem in that the lawyer who was with a company to does these did not disclose he was disbarred when I received my inheritance..and so it all looks like community property..I think that is were the family lawyer comes in the picture to see how this can be resolved.. I called her and said what about him taking out an allotment to me, and "gifting" or what ever the word is, all to me and that we put all this stuff in separate trusts..maybe we would have to file taxes not as joint but separate.. I hate this disease.
The weather this weekend was lovely - not to hot and I got lots of outside time. Outside time with my animals and in the garden do a lot to help me relax.
He is still doing his decline. When I was with him on Saturday he got very distressed for a while. I could see he was uncomfortable and strugling but had no clue what was causing it. He got all sweaty including his arms. Then he burped. Apparently, the problems he is having with swallowing also effect burping.
One of the problems with this stage is that what you might think is okay to do under normal conditions may not be right to do with how he is now. I need to check with aids/nurses before I do something to ensure that I am not inadvertently hurting him or causing problems in some way.
Each change and stage has its own share of stresses. This one has huge stresses for me as I feel so helpless and there is so little I can do for him. They do tell me that he is more relaxed when I am with him and they find it easier to do what they need to do for him when I am there. I'm glad he recognizes me on some level.
"Each change and stage has its own share of stresses" - so true, therrja! For the past couple of weeks DH has done fine in the mornings and early afternoon; then after dinner when he usually takes the dog out - he gets up from the table and staggers around and can hardly walk - can't take the dog out. So I've been doing it and he goes to bed. This afternoon I was rummaging around in our storage closet and knocked by knee-cap on something - Oh, did it hurt!! I have put ice on it off and on all afternoon. He was constantly asking if there was anything he could do to help me. So, I let him set the table, get out left-overs to warm up; poured us glasses of wine; he fed the dog -THEN HE SAID HE WOULD TAKE HER OUT! Wonderful, I said. After dinner, he said if you'll get her ready I'll take her out - and he did! He usually is in bed by now, but is downstairs in the den watching TV. I struggled upstairs with my ice! You just never know how they will react to anything, do you?
Vickie, that's great that he rallied round. They continue to surprise us. I thought I had things worked out to a pretty good routine and now the last two nights dh has refused to take a bath. It was all I could do to get him to bed; he refused to get undressed and when I finally got him to bed: wearing his dress shirt and -- thank heavens -- clean depends, he was so tired he fell asleep before I could leave the room. If he continues to refuse to bathe I'll have to get help in.
Today while he was at day care I went downtown shopping for long pants. It's too cold to wear his shorts anymore and he does not have enough pants for a week's stay in a facility (I've scheduled that for mid-October). He has a closet full of pants (in the years leading up to dx I never noticed that he was buying three pairs of pants and wearing only one of them) that are now too small for him. He now wears 38-30 and they are hard to find here. I brought three pair of 38-32s home and will have to shorten them. NOW -- I have to get him to try them on.
My son left on Saturday and is now back in South Korea for another year of teaching. So far so good for him. He said the apartment the school gave him is probably the nicest apartment he will ever live in. The school is located in an upscale area of the city.
I will miss him and the help he gave to me while he was here. On the other hand, my husband hasn't mentioned Nick since we dropped him off at the airport. It seems to be out of sight, out of mind for my husband. So sad compared to last year when he told everyone his son was in Korea and he was proud of him.
charolett, I use verison wireless for my internet provider. It works on cellphone towers. It is mobile like your cellphone. You can use it driving down the road. At home I put up an antenna outside on a tower to pick up the signal. I really like it.
Thanks Bob - I am about ready to go that way if we keep this traveling from park to park during the winter. So far he seems to be handling it fine. He talks to people and they don't seem to mind if he repeats. Far better than my sister's where he just had me, my sister and brother but there really was not any 'socializing'.
Today, our last day at the coast was beautiful. Tomorrow we move back to the other park and Wednesday we take home granddaughter. We timed it just right at the beach as the tide was coming in but had not gotten to the pools of water so it was warm to play in. According to the thermometer on the club house is was 70 but weather bug said the high was only 58. to me it felt in the upper 60s. Unfortunately tomorrow is suppose to be rain to move in. They have forecast rain many times the last week and it was nice, but this time I think it will rain. Oh well!!
I think "socializing" is important. Was talking about that w/one of the facilitators at a dementia group hb attends for 2 1/2 hrs Thursdays. Hb laughs and confabulates a lot while there. Home, it's he and I and things are fairly quiet. Today a prof and a student or 2 from the university that provides "brainbuilders" for men w/dementia once a week are coming to evaluate him. It seems to be mostly speech & hearing oriented, and hb has no problem w/those--unless you factor in "brain". He doesn't do well with questions. Wish there were local groups so we wouldn't have to spend time & gas $ driving. Oh, well, it's what we do.
Just saying hello all. My mom is 89 and moving from our family home to a retirement center an hour away in the opposite direction from DH's 'place'. I tried for months to find solutions for them both in the same town but when Mom went to see one retirement place for teachers/families of teachers etc.. she discovered two sisters living there that she grew up with in her hometown and that was that. She is excited about her move. I am twirling around trying to adapt or WAIT for things to settle for DH (the facility has undergone a big staffing change that began about a week after he arrived). Overall he is ok but I'm not comfortable about seeing new faces at nearly every shift and am trying to believe that things will smooth out soon. Anyway, just checking in here on this last day of August and just thank you all for being 'there'.
Today's our 36 th Anniversary. DH is oblivious. Got the sewer line open this morning--tree roots. Used my 4 hrs. respite for Aug. so as not to lo0se it. Spent my last gift card from my Birthday at Wal-Mart. Good break away from home, VaD, and pre-surgery paperwork, scheduling, planning. temp,is in high mid-90's and humid. Not pumping legs today! A good day all told, thus far.
Even now there are relatives who don't believe we've made it this far. Met 2/10/74, engaged 2/12/74, married 8/31/74. 22 years 5 1/2 months Caregiving Mental illness and then VaD. As Starling says, "it is what it is." You jiust do what needs to be done. Think outside the box and make it work. GET HELP IN.