As it is right now, I do not have travel plans. My younger sister thought that I should spend the first week after Dad passes with my Mom. I tossed it around, and told her today, I would like to hold off until the ruckus is over, come there when everyone has gone home. Be there when she needs me. To rub her feet, brush her hair, clean her house, and let her cry alone when she needs.
Thanks for listening. I know Dad has to pass, it is not something I am going to rail against the universe about. The family drama is in some ways worse than the idea of him going.
Coco, I think that is a good plan. Sometimes right after a loved one passes, there are people hovering around making meals, helping out. But then all of a sudden everyone has to go back to their life & their routine so then there is no one around. That is when a grieving person needs someone. And if you weren't planning on going to the funeral anyway, you might be just the person your Mom needs when (as you put it) “the ruckus is over.” But whatever you decide I know you will bring your Mom some comfort. You are a good daughter! ((HUGS)) & loving thoughts coming your way!
My Dad passed away late last night. Still have not made travel plans ...waiting for a day or two, I will let you guys know. Thanks for your support. I am glad he is out of suffering. You know, that last week of his life, his heart condition was so intense that he got an instant dementia, I guess not enough oxygen and blood flow etc. Ah the dear old fisherman is likely with his buddies in their favorite heavenly salmon grounds.
Several have posted about how hard it is to live this life. Last night I watched two movies on tv. One was "Lifeboat" and not sure the name of the second movie. Both were about people adrift in a lifeboat and the struggle to survive until help arrived. I was haunted all night because of these movies. I started thinking about how this is like our lives.
The ship sinks, or in our case dx. Then we are adrift as we take stock of where we are and what we are able to do to survive. In many ways unsure how long we will be in this lifeboat adrift. Weathering storms, loneliness, and despair. Like the movies, getting into the lifeboat. We know some of us (the caregiver) are going to make it and some (our spouses) are not. And sadly the only time we can get out of the lifeboat is to drift to the end of this terrible journey.
Just my thoughts.......
Sorry so many are having a hard time, I think it is the change of seasons. Just another reminder that we are still in limbo.
blue, I think that is a great analogy. I also think that that change of seasons affects our moods, and the moods of our LO's and can make our role as caregivers more difficult.
sept is here and already the start of early flu I believe. I had it 10days and now poor DH has it. it breaks your heart to see them congested and sick. but it must run its course as we all know over time we heal. change of seasons and moods. I think many of us don't like to contemplate the holiday season upcoming. it reminds us too much of what used to be. having to relearn to live and modify is very difficult on our psyche. but we must endure and do the best we can. hugs to everyone having bad times of late. seems we are many. divvi
Survived our storm last night - fall weather is here now. The gust were clocked at 70 mph. In the south you could see the dust storm building - reminded me of how the plume spread out when Mt St Helens blew. After the dust hit, then the winds, rain, thunder and lightening. The only damage was the topper on our big slide torn. Positive it needed replaced so will have to just pay the deductible. At least our agent said insurance will cover it.
DIL called when the storm his here and said she does not like dust storms. Told her 'welcome to the desert'. I told her I was going to call and warn her but obviously didn't.
Hope Diane's dogs are better today. They got the storm over on the west side of the state too and they were pretty scared.
Last Friday we took some stuff up to Cheney to my DIL that we picked up in Vancouver for her. I thought Art had recovered from the whirlwind trip to the doctors in Vancouver and Portland Sunday/Monday but guess not. He played with the kids some at the apartment, then we went out to eat. He was chasing the kids in the grass when he fell down. He got up the kids still wanting to play but he started to yell at them to quit when I said 'smile'. He calmed his voice then told them with the disease he has he can't play like he use to. During this tears were running down his face and he hugged them.
Last night I was talking with DIL about how they were doing. Grandson (age5) was shocked cause he had never seen Papa or a man cry. She talked with them about it, about the future how some day Papa will not remember them in his mind, but will in his heart. They talked a lot and about how he will someday die from this disease and be waiting in heaven for them. That seemed to bring them comfort. Grandson was angry cause the doctors can make him better with his FPIES but can't make Papa better. ;-(
On the way home hb said at least 4 different times he enjoyed seeing the kids. He has never said that before. I also heard some sniffing so he must have been crying some. It was dark so could not tell.
We've hit a patch of warmer, sunny weather after a stretch of cool weather. So far we haven't had a frost but I have had the wood stove on a couple of times. Amber, our fire wood got delivered last night, and DH actually got up early this morning so that he could do a "man thing" (his words) and help me take the fire wood off the trailer and stack it. We still have a lot of work to do to get it all in, but tomorrow is supposed to be good weather too, so I will be leaving the rest of the fall maintenance stuff until after we get the trailer emptied. Leaves are starting to turn - soon the deer will be back looking for a free handout.
Just talked to a guy in the park who came highly recommended by others to do work on the MH. The roof vents all need resealed and the roof needs cleaned and resealed - things Art use to do. Now I will have to pay to have it done. Another cost of this disease. But at least it will not leak during the winter and that is what counts. Did find out we don't have a rubber roof which is what we have been told - it is metal with a rubber coating over it. That would explain why it is so noisy when the winds blow!
The slide topper that was torn in the windstorm has been taped for now. It should hold unless we get more 70mph winds which in that case I don't know. I do know if they give warning again I will bring the slide in and not chance it. Insurance will replace it minus the deductible but that money will be used right now to get the vents and roof sealed.
Weather has cooled off to fall weather. Nice enough to leave the windows and door open during the day. Not sure later in the week when the high will be in the 60s if we can, but usually can cause of the sun shining on the MH.
last night went to head to the store and found one of my wipers was falling apart. We had replacements in the trunk to put on this fall, so got the one for that side out. He could not figure out how to change it. I could not read the instructions cause I did not have my glasses on. Thankfully the guy next door came out and changed it for us. He said any time just give him a call. Unfortunately his job at Hanford will end next month and he will be leaving. But I am finding guys in the park willing to help.
Charlotte, I am glad you are finding some help from the neighbors with the little chores that your hubby used to do. These people help more than they realize! I sure appreciate the neighbors that help us from time to time!
Last night my DH watched the same hour and a half long television program twice, back to back. He did not remember seeing it the first time! And at supper he asked me what my father was like when he got back from the war (WWII). He had forgotten that I wasn't even born until 1952. How sad, he seems to be fading quickly.
September almost over. Each month does bring more decline. A year since official dx.for DH. Nothing can STOP It's deadly course. Firmly in Stage 5 now. I can't leave home without him ...No longer feel safe to leave him alone.
bqd.. Last night, he watched the new episode of Boardwalk Empire and then continued to watch it for a second time the next hour insisting it was another one. Remember just agree , I remind myself.
Wonder what October will bring? Trying to make the most of each day is so hard. But, then I remember I must because it won't be any better than this! :(
The other night I let the dog out and she went crazy ,clawing at the fence and barking like I had never heard before.Finally got her to come in and went to investigate and there was a 'possum lying right out side the gate,what ferious looking teeth. The phone rang and it was aneighbor on the next road calling to see if everything was okay, said she could tell my dog's bark was so different and worried what was wrong. NOW that's a good neighbor. I am so thankful but I realize how vulnerable I am living alone so isolated.Do depend on my faithful Doberman to keep me safe, what would we do without our pets and helpful neighbors?
Got up this morning to frost on the car and -1C....crisp and cold fall is here.
Bonnie - I have a big wood pile where we split the wood and then bring it over to the cabin by wheelbarrow. I had hubby start in August bringing 3 wheelbarrow over and stacking them each day to give him some exercise and to get him to do something. I've got moved what I will need for this winter and he feels like he is contributing.
Same with the TV shows here. I go on the computer so I don't mind.
I'm also born in October but the class of 1975.
I was late returning from the city last week and no dogs. One of my neighbours heard them barking a lot and came over to see what was the matter and took them to their place and kept them until I got home. It turned out there was a bear around the cabin and the little dog was tied up and the big one wasn't going to leave him and stood her ground. I don't normally leave him tied up usually I put him in the cabin but thought I would be gone only a short time and it was a beautiful day. But another one of my neighbours left a nasty note on my address post about my dogs barking and how it was disturbing them and then didn't have the balls to sign it. Talk about two different kinds of neighbours.
Got a notice from SS today. Starts out with: we are changing your benefits - you are no longer eligible for SSDI because you have reached full retirement age.
My first thought was 'oh crap'! Then it goes on to say your will receive $xxx for September and October, after that you will receive $xxx per month. Same amount, just officially changed the name of payment.
Charlotte and Elaine H My DH just turned 66 this month. When I opened letter , I thought it was going To be reduced too. I checked for info on SS website to get answer. It was not clear in the letter. Why couldn't they just state that your payment will stay the same! So we all have "young hubby's"! Too young for us to be in the trenches with AD. We were supposed to be enjoying the fruits of our labor in retirement.
Hot dogs and ice cream. That's what I had for dinner if you want to know. It's one of my juvenile menu choices. Sixty three. That's what I turned this month. And fifty five. That's the last year my life was happy. I can't complain I guess. Two years ago I didn't notice it was summer following my wife around the house. This week I realized I can't remember what it was like sleeping with her.
The heart is a lonely hunter the expression goes. I can see the truth of that. It's not important what you're hunting - it's important that you are. I'm hunting involvement I can believe in and by hunting I mean hoping something accidentally lands on me.
Had a chat with my BIL this afternoon. The subject was not important (although his complaints made me realize that I should stop trying to do him any favors) And his phone call did wake me up from my nap which made me rather surly anyway.
But what really got my goat was that before he hung up he said " When we looked after T (my DH) yesterday he was really good! He got right to work (making soup) and carried on better than I have seen him in five years". Well, I tried to tell him that my DH is capable of putting on a act, and that I am the one that pays for it later, when he is too tired to even act his "normal normal". I did tell him that this was the same person who two nights ago sat through the same program back to back because he thought it was the next episode, not the same one. Don't tell me he is fine!!!$%*@#
Anyway, my BIL wouldn't listen to me, so I guess I am just lying again about how bad my DH has become. Maybe instead of sending my DH for respite when I have my surgery, I should let my BIL look after him for a week. I wonder how long he would last?
Great idea. Do you think he would have your dh in respite by the second or third day?. My hb 's kids don't think he's so bad, they talk to him on the phone about 3 times a year, and he does talk good when they are talking to him for those few minutes. By the way, I am older than all of you, 73. I feel so bad you are having to go thru this at such a young age. Yes young. I remember taking care of my mother, she was 56, I was 20, my sister was14. That was really a mess, but we made it thru.
Bonnies - I'm with you guys when they say he doesn't seem that bad....grrrrr.
Some more things I realize he can't don't any more. We heat the cabin by a wood stove and he always looked after the firewood. Cutting, stacking, bringing it in, putting wood on the stove even at night when he got up to pee but not any more. I just lit it for the cold season and he isn't doing any of those things. I wake up to a cold cabin and no wood in the cabin. Another chore that is now mine to look after.....sigh.
Wolf - sounds like a fun dinner! I don't remember what it is like to sleep by him either and he's still here.
Hi guys. Hey Wolf, nothing is better than a couple of jumbo dogs. I think we all remember when our lives were happy. In my case there were signs for years and we went to all the best docs in NYC. As often as I think we've hit rock bottom, something happens to remind me that the is always some crap below the bottom. Still can't get used to having a conversation with wife that she won't remember 10 minutes later. Or answering the same questions 100 times. Sometimes I wonder if she's just not happy with my answer. At almost 66, the active, exciting future I imagined is gone. Only my wife's rapid decline can free me, and that's the horrible fact of an alzheimer spouse. You guys are the only people in the world that can appreciate this reality.
Well, today brought yet another sign of decline. DH decided to take a bath. After his bath, he was in the bathroom for a really long time, so finally I asked it there was something I could do to help him. He was sitting on the toilet and had been struggling with trying to put on his pullups -couldn't figure out where to put his legs without getting everything twisted. I got them on him very quickly. I am actually surprised he let me into the bathroom. Which is where my dilemma lies - DH has always been VERY private about the bathroom and what he does in there, and I have always respected that. So how do I go about helping him in the bathroom, while letting him maintain his dignity? And how will I know when he will need help (as in today) as opposed to when he is aware enough to pull up his own pants? This is so sad. I broke into tears several times today - partly because of frustrations not related to DH, but certainly my awareness of how much he is slipping was a large part of why I had to cry.
bqd, I sympathize! Same thing has just been happening here. I think you did the right thing to ask if you could help him, that's what I did. After a couple of weeks, it's no problem for him for me to do whatever he needs help with. An aide came today for the first time to bathe him. I wasn't sure if he would let her, but she was so good with him and he cooperated fully! These things happening are no fun to watch but we just keep going. Hugs to you.
bqd, how sad. Each new loss seems to need its own grieving all over again. I wish there were an easier way for us spouses to deal with it but I haven't been able to find one.
Joisey guy, your comments resonated with me. We went this week to get the results of DH's extensive testing from the specialist. And she was happy to report that there was almost no change in the last two years which means either that it is not Alz. but rather some other dementia problem, or that it is moving very slowly which she kept saying was very good news. She could not explain all the changes I have seen in DH in the last two years and in even in the last 6 months
I asked to speak to her alone and then told her what I thought of her idea of good news. And that at the risk of sounding very cold-hearted, the fact that this will go on even longer and the fact that I will be looking into the eyes of the man I love and seeing a stranger looking back at me is NOT what I consider good news. I said "this is the ugly truth that people don't speak" and I asked her to go home to her husband and try to imagine it being him and think about how she would feel. I asked her to consider that the next time she spoke to her patients to keep that in the back of her mind.
bqd - as they say: the way we approached them is important. You asked in a non-threatening and respectful way so he probably felt free to accept. It is hard to see them decline but I hope he continues to allow you to help without problems.
Today we turned the MH upside down looking for the three packs of cough drops I bought last night. Sure he had stuck them somewhere. Finally called the store and they were bagged up and sitting there where he forgot to put in the cart. Also, the bagels which I totally forgot were in there. He is all upset that he forgot the bag blaming on getting worse, but I told him I had forgotten things before and so have others. But because at this store we bag our own groceries, he is blaming himself. Oh well.
ring, was his specialist going by that stupid MMSE test? What kind of reaction did you get from her after your talk? It's unbelievable how little the so called specialist know about this disease.
You know I'm not quite sure what particular tests were used. I didn't think to ask.
Actually the doctor was very respectful of my little rant (I was surprised).
Luckily I had lunch with a friend whose husband also has AD. I said to her "does this mean am I imagining all this?" And she said "no it just means their tests aren't able to pick up this stuff". It helps so much to talk to other spouses. Thank God (and Joan) for this website.
Thank you Vickie, Ring and Charlotte for your support and advice. I guess when this happens again (and I know it will) I will just ask nicely if he needs help. I consider myself so fortunate because DH has never showed any anger or aggression with his disease, just some frustration directed at himself when he can't do something he used to do, or remember what he wanted to say. So maybe I will be lucky here too and he will allow me to assist him in the bathroom whenever he needs help.
Ring - I don't think the tests are worth the paper they are printed on. You are close to your LO, you see the changes. Allan Vann said it best in his blog - the professionals should listen to the caregivers, because we really do know what is going on - we see it every minute of every day.
Remember too, that testing only test at the moment. We all know our spouse can do better and a few minutes later, hours, day later be totally different. And ring, the doctor needs to remember that.
I've lost it with doctors and nurses too. With a big "ARE YOU KIDDING ME!!!! response and then go on to fill them in with what I think of their response and what is really going on and how I am dealing with it. They chose their words more carefully around me now. I don't care if they don't like me just give him good care.
Bonny - every time they take another lose is really tough. Patience...lots and lots of patience.
Wet, cold, windy day here....a good day to get warm and cozy by the fire and read a book....which I think I will do.
Rereading my post...man am I ever getting cranky and tired...he is suppose to go into respite on Monday for a week but he is already saying he is not going to go. I've been 3 months without a break.
Also I have to buy a new vehicle....any thoughts on which kind I should get....I going from a small fuel efficient car to SUV. Haven't got a clue what are the good ones and which are the lemons.