December, usually the most wonderful time of the year for me. Today, I only know it's Christmas because I see the all the ads on TV and occasionally watch a Hallmark Christmas movie in the evening. This is my quiet time of the day, just me and the animals up. The last couple of months there hasn't been a minute to think about myself, or have any me time. For the first time in my life I feel alone - not just by myself, but alone. The following is an excerpt for a message JanK wrote a few days ago:.
"...As the years go by, situations arise, and we adapt. We cope. And more things happen, and we manage, we lower our expectations of life, and our world shrinks and then shrinks again. And then one day we look down and we're pulling someone around on a blanket! Recently in a moment of quiet, I looked around at the wreck of our home. It's messy and not very clean. Certainly nothing like it used to be. And then I looked at myself. Again, messy and not very clean. A shadow of my former self. And I thought about how we get from normal life to this"....
It really hit home, I wrote another paragraph but deleted it. Sounded like self-pity :) The antibiotic for the UTI has kicked in and DH is feeling better, Hopefully he will just want to stay down today so I can get to some things I've stopped worrying about. The sun is shining, and right now it's not too cold. Doing outside chores in 20 degree weather with ice on the ground was necessary, but sure let me know times are changing, LOL. Our youngest son who had a rental he has always said we could live in free if we needed to move back to CA - was the one in the fire and 99% of what he owned destroyed. He and his wife are moving on, bought a small modular in a senior park (he just turned 55) further from town. It was never something I planned to do, but always knew it was there :) I so wish we had a smaller place, and one that didn't need constant maintenance. But it isn't feasible, even if we sold this place we would still have to live somewhere. So here we are, maybe I'll bring down a few Christmas decorations but pretty sure no tree this year. Then I read JanK's post again this morning and thought - yes, how did we get from a normal life to this? Maybe I can use this weekend to see if I can find a little of our old normal, before AZ. I do love this time of the year, and hope all of you are finding some joy, even if only little bits and pieces. AH, my day has begun, LOL.
That was short lived, LOL. I decided to clean today, start at one end and go to the other. I had purchased new seat covers for the recliners because he uses a hair cream that gets the headrest dirty and is hard to clean. He loved them, put his on right away. But this morning he kept asking for something....couldn't figure out what he wanted --- oh, something to put over the back of the chair. Yes - so as I start away he says, don't bother, I have something here. He had gotten a blue tablecloth from the bag for the thrift store. I got irritated and he starts his routine that it was too good to throw away. I have plenty of others, more than we need. He never wants to throw anything away - nor give it away - nor sell it. He wants to keep everything we've ever had. We don't have room here and I don't want to keep dozens of tablecloths I never use. We are so short of storage space but it's a constant argument with him. He never wants anything to change.He cannot seem to get it clear that we don't have as much room here, we don't have the kind of house we used to and don't live the kind of life we used to. I don't think he even remembers what we used to do.
I have a hard time parting with some things - but once they're gone, I don't even think about them. I have a gorgeous glass cake stand dripping with silver and pearls. I never used it much but made a beautiful centerpiece. he didn't want me to give it away, so had it sitting in a box on the landing of the stairs. Had to go bring down a little heater for him, of course my foot slipped at the last step and the corner of the heater hit the glass and broke it. I almost cried, Immediately he wants to fix it, we can get a new piece of glass, which we can - but then we still have the problem of nowhere to keep it. Can't remember what he had for breakfast but remembers every little thing I try and get rid of, LOL. If any of you need a fish finder, we have one in the barn. Not used it since we moved to MO but he'll defend with his life before he'd let me sell it. As Jan k so aptly put it, how did we get from a normal life to this??
oakridge, Would it be possible to get rid of, sell, or give away items without telling your husband. You would need to do it little by little but it sounds like maybe you are sharing too much information with him. When you become the caregiver, you are the conductor of the train and get to make the decisions for the both of you. It is important to not cause agitation and you have to be creative, but many of us old timers have done it.
For instance, is there a neighbor or friend who would list the fish finder for sale?You would then have to coordinate with that person to pick up the fish finder from your barn some time when you are out running errands with your husband. And if later your husband should ask you about it (which he probably won't, if it hasn't tripped his memory in a while) then you just say you have no idea where it is. Perhaps it got lost in moving, or more likely it is somewhere in the barn and next week you might have a look for it. For your sake, you need to start evading topics that cause distress and talking around others while doing what you need to do (cleaning out) silently in the background. Which is all, trust me I understand, easier said than done.
On the trip to visit Leannah this morning Sam the cat got sick from the ride and eventually stuff came out from both ends. And he got dirty in it. I cleaned him as best I could at the ALF but he will get a bath tonight. That should be interesting.
Leannah isn't pushing for web access but mentioned Instant Messenger access now.
I will end tonight with a comment much different from mine earlier. Was checking my phone for a voice app and came across some recordings I'd made of songs, some from 2013. Not sure why I had all of them but one was "our song". I must have found it on youtube. I asked dh to stop the tv and listen to something, and as he heard the song and recognized it he smiled and my husband was back again. For a few minutes we were both in another place, another time. But it was well worth it, and our day is ending on an up note. Maybe December will have more unexpected moments :)
@Oakridge What a sweet ending to a difficult day. Sometimes music can carry us to a different place whether we have AD or not. Glad you two were able to experience the love zone together.
December 2018. Discovered my StepDaughter has unfriended me on FB. I was upset at first, thought it immature and unnecessary, but then decided to rethink her decision. Her toxic nature is poison in my life. She is critical, cruel and selfish to her dad and me. My therapist has suggested that I have no direct communication with her in order to protect myself from her venom. When I try to update her on her dad's health, including emergency hospitalizations, she is distant and often doesn't respond. She calls her dad once a month and talks for less than five minutes and never has her children (17 and 15) make any contact nor does she share what is happening in their lives. So, what's the big loss of the FB friend? Nothing. Indeed, I'm better off. I didn't marry her, I married my husband and that's where my loyalty lies. So, I enter December knowing that sometimes it is best to let of people go who are not healthy for your soul.
Make sure you go in and block her too so she can't read your page.
We have two adopted kids. Our daughter has not spoken to her dad in 10 years. She has no desire to see the man that made sure she had a roof over head, a warm home to live in, and food on the table. Our son can not deal with talking to his dad due to his no memory so can't carry on a conversation. Years ago I had to stop having our two oldest grandkids come because he would have nothing to do with them and it got too much for me - we were at my sister's who had just had a stroke with immediate VaD, so dealing with two dementia was too much when adding active kids. I have just recently reconnected with those two who are 20 and 18 (they lived with their dad not my daughter). The other grandkids too I don't have contact with because he doesn't like them.
Charlotte. Brilliant suggestion. I just blocked her. The account she unfriended is one her dad and I share which says even more about the situation. Thanks for the idea.
Hello friends, I'm here to let you know I'm progressing in my caregiving training. I suddenly became an expert in automobiles, tires, mechanics & similar type things. My decision to put the horse down, my decision about what vet to use, my decision about who and where to have the hole dug. I never knew I was so smart and learned it all in a matter of days :) You may remember it was just last week it was a fight a day about everything we needed to do. Not sure what has changed. Not sure I like it either, LOL. Now instead of him getting angry if I try and do something he simply expects me to know how and do it.
When I first came to the list someone talked to me about having to face selling the horses, the farm etc but I have always been able to take care of it. How smart she was! Now that he can't get around, at least another month or two, has made a big difference in how I see it. Breaking ice in 20 degree weather, hauling hoses around, setting up the de-icer, getting a bale of hay in the front pasture - tending to everything that needs to be tended outside and inside - well, that's not true. My house is such a mess and the home nurse comes in the morning because I didn't get home in time today, and was too tired when I did. Was 47 today and felt like summer, but a sharp drop tonight to about 23, will remind me in the morning it's still winter - don't even think we've gotten to winter yet. Trying to get everything ready before the snowstorm hits - if it does. Last week we had ice, and tornados bouncing all around. Did stop and pick up some extra groceries for us and all the animals because I don't plan on going out unless it absolutely necessary.
It's easier not to have to fight over everything, but why concerns me. Is it the medication? Was it the infection that caused the rapid decline? Is he just reaching that point? I have actually been looking at real estate ads, will have a friend that is a realtor come by and talk - but we still have to live someplace. I said earlier I feel so alone right now, been so depressed, doubt I'll even get the tree up. What a difference from a year ago. So here I sit, cold and tired, and getting ready to go through the calendar, the bank account, etc, to make sure I'm up on things. I feel like I have to check every day to be sure I'm not forgetting something important.
I read in Reader's Digest today they have a new blood test that is about 70% accurate in predicting who will get AD about 9 yrs earlier than it's diagnosed. I'm not sure I'd want to know that far in advance for either of us. In fact, was thinking about having the contractor dig two holes while he's here, has to be at least 6' deep anyway. Being up on the side of the pasture with a view doesn't sound bad at all right now.
These are the times we have dark moments. While you list all the practical things, keep a light on for the duress of all this on your feelings and outlook. Don't call that contractor.
Thanks Wolf, the backhoe contractor will be here Friday am and the vet Fri pm anyway. When a horse is put down you have to bury them a minimum of 6' deep to keep the coyotes from digging them up. But maybe by Friday I'll be back to only one hole, LOL. At $200 minimum probably can't afford two.
Oh Oakridge, sending you a big, giant ehug. I too have taken on new responsibilities around the house/property and know how overwhelming it can be. The requirements of our small country property in California are not nearly as extensive as yours with animals in the snow. Take your time in making life changing decisions and walk through all of the aspects before you jump. And keep posting, we are here for you. I agree with Wolf, no digging holes in the snow, not now.
Oakridge, I think a lot of people here have experienced the sudden declines in their spouses. You kind of think the disease will be a gradual progression but more often there are sudden and steep declines - sometimes from illness - but often unknown. My experience over six years was plateaus and drop offs that caught me unaware and left me stunned.
Oakridge, my experience was just what marche said--things would go on exactly the same and then all of a sudden, there would be a huge unexpected downturn. And no digging holes! Except for your horse, which I'm really sorry to hear about. That must be a rough one--you didn't really say, but I'm wondering if it's an emotional loss. I think of my horses to this day--and they were sold off more than 25 years ago. But I remember going out and chopping ice out of the water buckets in winter and all that. I had a cast on my arm and was using a quad cane at the time (broken bones from a fall)--but ya gotta do it. Throwing you the knotted rope--we are holding the other end.
Thanks everyone, I never really thought about it but yes, I probably did expect it to be more gradual, this is the second time he has made such a rapid decline and it caught me unaware. I always wonder if its something I did or didn't do. Right now he is really angry with me over the horse. Told me don't expect him to come out tomorrow -- then in the next breath he asked if that was what I have planned for him, LOL.
Yes Elizabeth, it is emotional for me, and probably for him too, we've had horses forever and had wonderful times with them. This one is my favorite, solid black and so sweet -- but old, getting crippled and there are some mornings my heart breaks when he gets up to come to me. He has really helped me the last couple of years, been someone I could talk to and cry without having to explain anything. I medicated him heavy tonight, hopefully it will help and will brush him down good in the morning. We had a horse ranch in CA also, and the first winter here was fun, even when we had to have a rope to guide us from the house to the barn - that wore off fast :)
Watching the weather close tonight, it could go either way. Several inches of snow and ice or all slide to the south of us. There is an old Indian saying...The outside of a horse is good for the inside of man.
What is your spouse's ability to do anything beyond sitting on the couch, sitting at the table and going for a walk? This is all that my husband can do. He cannot get a drink of water, find a snack, buss a dish or wash a dish even with assistance. He wants to be waited on 24/7 not because he can't do it but because he won't. If asked, he makes up reasons why he cannot help and won't get off of his duff. It makes my job all the harder when he can't/won't help with anything even when asked. When we have guests, he will speak up and say "I'm not an invalid," but then he sits down and acts like one. Should I just expect that he will need 24/7 catering and try to find the funds to make sure he can be waited on? I can't do it all. I'm resenting the fact that I have to try so hard and he won't even lift a finger. Is this normal for early stage? Ugh!
It is normal for the disease. Some get there earlier than others. It drives me crazy.
After being placed for those 6 weeks hb expects me to wait on him which I do mostly because he doesn't seem to remember. That may be true because they did most every thing for him - he wasn't expected to do basic stuff like shave, brush his teeth, etc so that mostly never got done. I actually find it less irritating and makes me a lot less angry now than where your husband is. Probably because those 6 weeks I had it all to do myself (RV daily living) so no longer expect him to help. I used to get really angry because he sat there (or stood and watched) while I would empty the tanks, clean up dog poop, etc.
I would agree. Helping him with what he cannot do, like changing his colostomy bag, is much easier than doing things that he could do, like bringing a dish to the sink. But if that's how the disease works I will try to understand. There are so many treatment models that focus on having the patient do whatever small productive tasks they can do rather than just doing everything for them but I don't think they will work here. Sorry Teepa Snowe.
My husband told me he would never accept his condition. He tried to do as much as he could for as long as he could. Once he realized he couldn't do very much he tried even harder to be helpful, which in turn only made him very angry & frustrated. He got even angrier when he saw I could do it. I tried to do things when he wasn't watching, but that was becoming almost impossible. So, he spent most of his days angry, frustrated & depressed because he could no longer accomplish what he use to do in the past. It got worse when the TV was no longer holding his interest, because he was having more difficulty understanding what was being said. These are difficult times, for sure.
I don't even read the articles about ways to enrich their lives, keep them involved, etc - haven't for a long time. I don't have the energy or desire to work that hard. I know there are many that do but I am not one of them. About the furthest I go is finding a program that will keep his attention for a while which usually are football, hockey or the old westerns. But, even those are getting rare that they work.
I use to try to do the things needed around the MH like dumping the tanks when he was not here. Now I just do it whether he is here or not because it seems to no longer affect him. The 6 weeks he was gone was 6 weeks for me to figure it out that I can do it with him here and not worry about how he may feel. Sounds cold but that is my reality and survival.
Example: yesterday I finally did something about the bedroom window. I kept noticing ice down the side of the bedroom window. Finally figured out it was condensation on the window draining out the drains. Yesterday I took the blanket I had over the window off - it was wet probably from moisture running down the wall. While it was drying I wiped the window down, let it dry then taped plastic over it. Not easy cause I had to crawl around on the mattress to do it, on my bad knee. Thought for sure it would be hurting all night but it didn't. It actually feels better today than it has in a long time. Today I looked at the window from the outside - appears to have little to no condensation. The only negative meant pulling the mattress back to let the wall dry meant remaking the bed. At least I didn't have to fight to put the fitted sheet on which is whole lot of work!
Lynne - I hope you can find some way to get help and some respite. People here might have more suggestions too if you want to share.
My beautiful horse is resting way up at the top of the property in a little grove of walnut trees, overlooking the creek. Actually a beautiful, peaceful place, I could imagine being laid to rest there:) DH fought it and was nasty to the last but I just went ahead with my plans and spent almost the entire day in the pasture with my horse. He would have a stroke if he knew what it cost but as long as he doesn't know...he'll eventually forget. I mentioned earlier dh asked if that was what I had planned for him -- but to tell the truth, it wasn't so bad, peaceful, it's a beautiful place and he's out of pain. With everything our spouses go through - and we go through trying to take care of them -- maybe the way it's done with animals doesn't sound so bad.
Nicky, dh went along the lines of your husband. Still says he can do everything but has been years since he recognized many tools - and gets frustrated and angry when he realizes he can't but also won't admit it. Maybe that's why this last decline hit so hard, it was different. I had the backhoe contractor make a new road across the creek bed so we could access the upper pasture and dh hit the roof. Said if I'd wait till spring he could dig it out, by hand. No one could have dug that out by hand, and it took the guy about 30 minutes. Sometimes, the benefit overrides the cost. He will say, we have to get such and such done next week, but he can't do it and I've run out of energy for now. Yes, he too gets mad if I do something - that he's said he'll do -- except he can't. It's been a rough month for us. Dh said if this ever happened to him, just take him into the woods and leave him alone with a rifle -- but even though he still says that -- he doesn't realize he's there now. On the plus side, he can do a few things around the house - if he wants to. He can heat up something to eat in the microwave. Can run the cordless vacuum in the living room, if he wants to. Can load the dishwasher but if he unloads it he just puts it on the counter, doesn't know what things are or where they go. One thing that really bothers me is he has no desire for life out of the house - and specifically nothing other than sitting watching tv. Which means I don't have much life anymore either, in fact, I don't really have any life other than here....and I'm not ready for that. Then you still deal with others. If you just met him, and talked to him, you'd not immediately notice anything wrong. The things he says may not have a bit of truth, but if you didn't know it, it sounds good. it is hard to just go ahead and make the decisions, and/or do the work but I'm getting better. I've found if I just go ahead, full steam like I don't even hear him it works better. Later he doesn't remember anyway.
The home nurse came today while I was outside so he was involved with her and maybe didn't even realize what was going on outside. Didn't ask any questions, although I showed him some of the pictures I took today. He seemed to have forgotten already. I was riding in the backhoe today and mixed up some words, laughed and said although dh had dementia I was just senile, LOL.
Thank everyone for being on the other end of the rope! Sometimes it really helps to know someone else out there is going through the same thing - maybe a little different - but still the same thing - and I don't sound crazy to you.
What you said about your husband reminds me of my mom who said 'if I start forgetting like my mom, I will shoot myself'. She forgot but I wish she had not because the last few years she was just there - couldn't walk, talk, feed herself, etc just sat in the wheelchair. My brother who gave her the pistol years before said it would never have worked because it was rusted.
I am happy to hear it went well with the horse. I know you must still be hurting from it cause you will miss it. But, positive is one less thing to take care and you know he/she is out of pain and not suffering.
Oakridge, when you wrote your husband wanted to be taken to the woods, it reminded me of something my husband said. Our backyard backs onto a forest & on occasion he told me he just wanted to walk into the forest & not come back - he never did thankfully. He also never mentioned a rifle, but by that time he'd given away his hunting rifles, so maybe he'd forgotten he ever had them.
Well, that's no longer a problem now. He's in long-term care & can't do much by himself. He barely talks, but can still walk, feed himself, tap his hand to music & sometimes able to put a couple of puzzle pieces together with my help. He often still recognizes me & is able to hug & kiss me & rub my hand. I sometimes look at him & can't believe I'm looking at my 68 yr old husband, who looks so lost & older than his 68 years. Most of the residents there are 12 to 20+ years older than him & sadly he fits right in.
My husband is 82 Nicky and at 68 we were still going strong. I'm sorry that you are having to deal with the disease at such a young age. You may have mentioned how long he's had it but I missed it - assume since he's already in long-term care it's been awhile. You gals who have dealt with the later stages for so many years really amaze me, although dh has had it for 10+ years it's only been the last few that he has become noticeably worse. We are really on a roller coaster right now, not sure of the exact reason and it doesn't matter since it is what it is.
When I leave my husband with a caregiver he gets mad cause he says he can stay by himself. I gave him a chance today. I had to go to the store - told him I would be back in an hour (was actually back 5 minutes early). He is sick -running a fever and coughing all the time.
Get home he is outside walking around (36 degrees lightly snowing) with no coat on, the dog not even with him. I assuming he was outside looking for me. When I chewed him out, for me not him since it is in one out the other ear, he said he was going to pack his stuff and leave. I wanted to say 'go for it' but instead told him he was going no where and leaving would not fix the fact he is sick. Gave him food to change his mind direction.
Doesn't understand or like because I won't let him go outside.
Oakridge, my husband was diagnosed at 64 & the neurologist assumed he'd had it since around age 57 - but no one can really know for sure. Lately, I've been thinking back & remembering "little things" that were said or done back when he retired when he was 54, nothing to raise a red flag, but now I think it may have been the disease, especially now that I know the disease can be there 20 yrs before any symptoms show up. My husband declined very quickly in January 2017 & by June of 2017 I had placed him in a private facility. But, there were many behavioural problems in that facility, so he was admitted to 2 different long-term care facilities. The first one was not well suited to his needs, so he was transferred to a second one, which is much better & he's doing well there. 2017 was a rough year for him, because he went from living at home, then in June to a private facility, in August 3 weeks in hospital for psychological assessment, in November admitted to the first long-term care facility then January 5, 2018, transferred to the facility he's now living.
Charlotte, when I first tried to leave my husband with a caregiver, that did not work at all. I had to wait until he told me he didn't want to be left alone & by then it was not safe to leave him alone anyway. He still didn't want a "stranger" with him, he wanted me with him, but when I told him I had "doctor appointments", he became a little more accepting of the caregiver.
When I hired a caretaker I didn't tell him she was there to be with him. I said she was there to help me clean, and clean she did. The first week we worked the whole time. The second week, after an hour I said I had to go to the store for a few things and left him "supervising her". That went well so I just went out even if I just went to sit in the café with a cup of coffee. Sometimes it was a support group meeting and often grocery shopping. He never said he wanted to go with me and he just got used to her being there. After a few months I hired a second person for a different day of the week. Someone suggested I do that so if one got sick or quit I wouldn't loose both days at once. Having help was what saved my sanity and allow me to keep him home to the end. He was on Hospice and in a hospital bed for the last ten months. In all, it was about 7 years.
MaryinPA, that was a very good idea - I didn't think of that. That might have been easier for him to accept. I wish I had known about this site at that time - I would have received a lot of useful suggestions.
At that time, the Alzheimer Society had told me about one of their patients, this man that was "helping" his wife's "friend" aka caregiver, with doing a resume, since the man was still fairly good with the computer. The 'resume' was stretched out over a few weeks & then it became just weekly visits which the man enjoyed. Although my husband was a teacher & in fact taught computers, he unfortunately was no longer able to use the computer. It was a good idea, but not for my husband. My husband was very aware of his memory problems, which made him very angry. He also didn't want help with anything he tried to do around the house. The only person he liked working with was our son, but he lives 5½ hours away, so that didn't happen too often.
The last post I wrote jogged my memory & I vaguely remember someone(perhaps from the Alzheimer Society), suggesting the caregiver come & help me with housework. But, since I was physically capable of doing my housework, I didn't think that would work with my husband. I assumed he'd get upset if I left the caregiver there with him, when the caregiver was suppose to be helping me. I had totally forgotten about that.
However, he believed the story I told him, even though he was not happy with it. At that time he was going to the Memory Clinic, so I told him the visits from the caregiver where part of a program offered by the Memory Clinic & since he didn't want to stay alone, that would be the perfect time for me to go to my "doctor's app't". He questioned my many visits to the doctor, so I said I belonged to a support group for menopause - I didn't want him to worry about my health. Because of his displeasure every time I left, I had to tell him that the doctor would kick me out of the group if I didn't attend. It was so difficult for me to lie to him. I could see in his eyes that he believed me because he trusted me not to lie to him. Actually, that look still haunts me.
Hb has his neuro appt tomorrow in Portland. Been watching the weather all week - gone from freezing rain to rain and warmer. Tonight it is snowing - not just up the Columbia Gorge but outside my door. Will see what morning brings whether we go or cancel - again. The last time I cancelled because he had a melt down, crying and refusing to go. If I cancel will just wait until spring I guess.
If we get much snow that means shoveling when the dog goes out. She doesn't like to walk in the snow - poor baby! Wish I could train her to a pee pad.
Chickened out. The interstate through the Gorge appears fine but it is getting out of the Tri-Cities to Oregon that isn't. They forgot to cancel his bus for day care - the driver said the roads are fine here but getting up over the hills to Oregon they are slick. We were surprised with about a 1/2 inch of snow last night. In another hour or so they will be fine but that would make it too late to get to PDX by 1;30. Now that I mad the decision going to climb back into my warm bed.
Had to laugh at the title to one of the 'spam' posted today. All I saw at first was 'semi-automatic egg tray machine'. My mind went to a gun shooting out eggs!!!
Most days I feel like I'm desperate for any sort of communication or conversation with anybody. However, yesterday we went out and about and I had to communicate with a lot of people quickly for hours. Even though one of the interactions was a real chat, I was exhausted by all the talking. I just wanted to go home, get into bed, and pull the covers over my head for a while! I feel like I'm losing my ability to go out among people and interact with them. But I still want that communication with other people.
I'm with you JanK. A simple doctor's appt today took everything out of me. Just getting everything ready, dealing with the people - meeting with the doctor, I needed to make a couple of stops but ended up just coming home. My world is shrinking along with my husbands and learned today it will be another month or so before he can put weight on his foot again. Has already been 3 months -- am just going to scratch Christmas, my favorite time of the year. I keep up with the world through a weekly news magazine but it's hard for me to just chat with someone, I don't have much to talk about anymore, and rarely go anyplace but the doctor and grocery store. Like you, I feel i'm losing my ability to interact with people in a normal way.
This is a little off-topic but I was reading through the posts from spring/April of this year, so much was going on with everyone. Of the names I recognized I have an idea of how they are now, but was just curious how you feel now? Wolf could put this much better, but there was so much that people were dealing with - yet today there are only a few of those who post. Did they leave? Did it get to be too much? How have you fared in the last 8 months? Anything in particular made your situation better or worse?
I still visit here every day and relate so much to the sad stories. You were all so helpful to me when I really needed help. I haven't contributed anything for a long time and am feeling a little guilty about it. So I'm thinking that maybe I can share a little of what my life is like now at the age of 97. Maybe it will be meaningful for anyone who reaches that age.
Three and a half years ago, after my Dear Helen left me, I was living in a big house all by myself. Unable to drive anymore and barely able to walk with a cane. My kids and my neighbors were caring for me. I was still playing around with my computer and my little website ..... writing stories, making songs, etc. But I was feeling that I was becoming more and more of a burden on my neighbors and family, and I didn't like that.
So when my kids got me moved into a little apartment here at Hillcrest, home for the elderly, I was very thankful. But what a huge change.,,,, It was like a new life. And I was having a hard time adapting to it. But after some powerful thinking and with the help of others here, who were in the same boat with me, I figured out how to be happy again.
The great philosopher, Aristotle, tells us ...."Happiness is the meaning and purpose of life. The whole aim and end of human existence " I certainly agree. Everything I do or say is somehow related to my happiness. It's always been that way in the happy life I lived for 97 years. And what made me happy was thinking I was doing something of value for others.
Now that I've almost completely lost the ability to do anything of value , I decided to be thankful for what I can still do. There's a lot of solitaire games that need to be played, and a lot of music that needs to be listened to, and a lot of dumb stories such as this that need to be written, and a lot of candy that needs to be eaten, and maybe a few kind words that need to be spoken.
I find that I can still be happy and I know that my happiness will be something of value for my family and friends ..... as their happiness is for me.
Because he is no longer placed but on in home care, I have a new social worker. She called yesterday to let me know a facility in College Place has 5 medicaid bed openings. I just spoke with one of the guys in the RV park. He is from that area and knows the facility. His mom (or MIL) and other people he knows have been there. He says the facility is nice and they do have the activities they talk about on their website. College Place is by Walla Walla - and hour drive from here. I think I will go check it out, maybe tomorrow. If I like it and should place him there I think I would delay moving there - just go visits a couple times a week and if he does well, once a week. The last few days have been frustrating for him (and me). He wanted to go out but I would not let him unless he put shoes on and a coat. Last night as he was going to bed, I tried to get him to use his CPAP (which he won't now) so he said he was going to put his clothes on and leave. I asked him where he was going to go - he climbed into bed! If you want to check it out, it is Eagle Springs memory care in College Place, WA.
He's sounding more and more like he's just not safe at home, Charlotte. It wouldn't take much for him to get out and wander away and get hurt...or worse. I think you are wise to keep looking for places where he could live.
George: "and a lot of candy that needs to be eaten." lol Yes indeed--that is one of the best reasons I've seen yet for hoping for a long life. : D
Yesterday was my worst day of the year. Worst nightmare scenario, car has severe problems while driving 4 hours to pick up my son. Brake calipers froze, which not just destroyed the brakes but the axel. Sold the car, a friend of his offered to drive the 4 hours each way to pick us up (I didn’t even make it to Ari’s school). We are all in his car driving home. I believe that the brake issue is related to a hit-and-run incident 2 years ago.
I started shopping for a new car last week, did test drives on Saturday. So I am in position to start shopping. I hate buying cars but people have given me some good ideas.
Since Medicaid will be an issue in 2-5 years I am considering this to be my last car I ever buy. Subaru Impreza, which is smaller than my Legacy. I considered a Honda Fit, less expensive, incredible cargo room if you put down the rear seats, but some things are lower quality, such as drum brakes instead of disc.
paulc, as if you don't already have enough stress - this story makes me anxious just reading about it. Thank goodness for the time and generosity of a good friend. I am on my second Subaru and getting ready to buy the third (# 2 is going to my daughter). I've been very happy with them. I didn't think I needed a back-up camera, but it's become a favorite thing on the car.
that is my big concern with a car 17 years old and 154,000 miles on it. I could never afford a new car - outrageously expensive. I have not had car payments in so many years I have no desire to do it again.
If a car is decently made, properly maintained and you have some luck it can last a very long time. Be sure to follow all maintenance recommendations by the manufacturer, though if an old car there might be updated recommendations. For the Legacy is was an oil change every 3,000 miles. Good mechanic who would look for any problems while servicing it. Don't take your job to Jiffy Lube, I've heard too many horror stories. I believe that this week's problem stems from a hit-and-run it suffered from 2 years ago.
Subaru is one of the 3 car makers that makes new parts for 20 year old cars. One reason I will buy another.
Cars are expensive. I believe it is more than inflation since the common car loan has moved from 3 years to 5 years.
I do hope to not have to worry about repair bills for a while. My insurance will go up but that is because I will add collision to the new policy.
Good thing I had no plans to visit Leannah this weekend. Won't be possible.
How nice of you to write and let us know how you are George, it sounds like things are going well - maybe not what we expected for our golden years - but going well :) I think 97 is quite an accomplishment!! Learning how to make the most of what you have is a blessing not everyone can do, I lift my glass to you.
I got my car back today with a new radio, which will stop the drain on the battery but since it's 15 yrs old, the disc that unlocks the navigation system doesn't work. Now they have to try and find one. It's been such a good car, with no major problems, and we drive so little these days I hate to buy a new one. i've looked at the Subarus, they are highly recommended. My granddaughter has one and said she'll never buy any other type. I want to wait another year before getting another car to see how things go. My husband is changing so fast these days, I'm not sure what this next year will bring. We still have the 4x truck and he doesn't want to part with it. Don't really need a second vehicle these days - but I agree, it's nice to have an alternative when we need it. I am slowly getting all the pesky little things that have have to be done completed so feel like I can relax a few days. Although our Christmas will be very quiet it will be good to just have some down time.
Time to also think of the future - this last illness has taken a toll on my husband, there are days I feel like this is the beginning of the end -- not the end of his life, but the end of life as we've known it. We need to think in terms of what we will do in the next few years, rather than just getting by every day.
Charlotte, I'm so glad to hear you may have found another placement for your husband, maybe this one will work out and be a good move for both of you. Good Luck!
While I'm here I'll ask another question :) Was there a point in your life with AZ when you felt like I do, its the beginning of the end? When there was such a big change that you knew things could not go on as they had, and a new plan had to be worked out?
Oak ridge, do you really need a navigation system built into the car? New cars are moving away from providing their own navigation systems and depending more on people using a gps program in their smart phone. Of course they are happy to sell you a navigation system if you want to pay for it. I had a nice smartphone holder in the car and my iPhone worked with the radio I installed so sound came through the stereo speakers. If you your car is working well otherwise I would avoid replacing it.
I would avoid the 2017 and 2018 models of the Subaru Impreza. The 2017 is not just a new design but it is the basis for the redesign of all Subarus. The first year of a new model is usually problematic and it is clear to me that the 2019 model fixes problems with the 2018. I don’t know the status of of modes.
Charlotte, good luck with this possible placement. It is sounding harder to keep him at home safe and for your own health.
Oakridge, I'm trying to think back to answer your question. I think the first Big Thing was when he got pneumonia and ended up in the hospital for a week and a Rehab for six weeks--when I brought him home it was to full-time aides--and that increased plan of care was absolutely necessary. The second Big Thing was when he had the three falls in one day, got completely and totally disoriented and could not walk anymore (but still tried), and spent another week in the hospital, two weeks in Rehab, and then came home to Hospice care for the last four months of his life--again, absolutely necessary plan of care. The third Big Thing was when he just slumped in his chair out on the screened porch, and the aide and I got him back to bed--and he never got out of it again until he died some days later. He was total bed care for the last week of his life, with me staying as close by as possible in the house.
Cars? Oh my goodness, I'm not even going there. I buy new, and then drive it forever. I'm currently still in the old Toyota Highlander SUV. Don't really need something that big anymore, but it's been paid for for years, and as Charlotte said, I have no desire for car payments. Paul C., I got nervous in the service just reading about your experience. Scary stuff.