My partner is quietly carrying two onions around the house at the present time. I will have to find them later. I have created quite a number of changes around the house recently in the name of safety, although I sometimes wonder. Our front door is dead bolted when we are in the house together. Our back hall is filled and blocked with a basket of poisons, the laundry basket, the trash basket, the recycle bin, the mops and brooms and plunger, and grabber and foot stools. All things I need to access daily. But the back hall is now full. I wonder how the fire department will get in in case of an emergency. I really can't let myself think about that. When I joined this website Last January one wonderful man (sorry I don't remember who) told about every night how he moved a heavy bookcase in order to block the stair case. I remembered, and now every night I make sure everything I might need is in the bedroom, and I block off the front half of our apartment with our dining room chairs. This is so she will not get lost in the night in a home we have shared for 14 years. She can, and does on occasion, move these chairs, but there is no way she can do so without waking me up. I tried alarms but they upset her too much. The shower chair is turned upside down in the shower, something that disturbs her when she looks behind the curtain, but is necessary so as not to get confused with another fixture. I've taken the nobs off the stove, only now I've misplaced the one that goes on the oven, so I guesstamate the heat when I cook and bake. I just found a new home for knives, which she had ignored until recently. When guests are over for supper I tell them where to find hand towels if they need to use the facilities. There is no more room in top shelves or the back hall.
Now my love is carrying around a loaf of bread. I'm not so worried about the bread. It will only get stale if not found. Not so with the onions. I really needed the week's respite time I took a couple of weeks ago. I'm far less stressed now. Picked her up afterwards, at the NH, to find her forlorn, sitting in a wheel chair behind the nursing station, with a pressure sensitive alarm. Her attitude this time was almost disbelief at seeing me, rather than joy. She slept most of the way home. She settled right in, and walks about with help of grabbing on to furniture. We are gently affectionate with each other. It seems that hugs are our only way of communicating. She has lost 99% of all nouns. She follows verbal directions when accompanied with gentle physical guidance.
Took time out to find the onions. She is now lying on the bed, with bread on bedside table. The one thing I am having to learn about are her panic attacks. They are new to me. These have been occurring on occasion the last few months. Present solution is one Ativan. I told her doctor I was doing this, and have her consent. There is no reasoning with her when she has an attack, and I just feel lucky to get the pill into her. Last night’s was precipitated by a severe thunder storm which came through. She couldn’t understand that I couldn’t make it stop.
So this is my life. This is her life. I had my “wellness physical” a week ago. Doctor prescribed medication for “situational depression”. I did some research and decided that just because I did have depression it did not mean I needed medication at this time. (I believe everyone in our situation on this page has some level of “situational depression”.) I think I will know if/when I need it. Sometimes it is enough for me just to write down what it is that is going on with the both of us and send it off to you, my support group. Thanks all.
My partner is up again now. Maybe I’ll get us ready and we can go to Pancake House.
That's what they said I have: "situational depression." But I've had it for 9½ years! At some point, doesn't it burn itself into your soul and turn into permanent depression? (BTW, many times I've often wondered if there are any psychologists on this site. Seems like there are not, unless all they do is lurk.)
But what is going on in your house is something that can drive you around the bend. I think that your partner's condition is one of the hardest stages to live through because it's like living in an insane asylum.
Thank you Lindylou because that man was me who moved that chest every day. I read your post twice too because it took me so deeply into a world I lived so intimately I'm not surprised by anything you said. Try and stay strong and try not to worry whether you're strong enough. In fact, try not to think about yourself at all. They panic in part I think because they are in this halfway world where some things make sense and other things don't make any sense at all and that is frightening when you only have half of yourself left to get what makes sense and what doesn't with. I feel for you kiddo.
Myrtle, in long term depression we can give some thought to the effects of the familiar and the comfort zone of that. In some ways I would liken the random makeup of our chemistry to the random makeup of anyone's collection of aspects that make up their form. Change the eyes and nose and chin and height and skin tone and hair tone and eye width and nose length and countless others and you have what appears like a completely different person. Except each person has their random makeup set and the question is - can we operate in that?
I wrote about the insane asylum on the resident thread. Except I put myself in that and was the doctor, the patient, the staff, and the floor sweeper. What's weird about that is that when I did that in 2012, I truly worried that I was flirting with insanity. Except I was actually very badly beaten up and everybody is a loony anyway. Just watch television or walk in a mall or read the paper. That's why I never bothered checking myself out - I want to belong.
I have a master's degree in clinical psychology, although didn't stick with that career. Nothing I learned there was any help In dealing with this. A family came in once asking me to fix their Mom who.was suddenly paranoid and accusing them constantly of stealing from them. Nothing I could do. Absolutely no tricks up our sleeves for that one. Helpless. I am taking a low dose antidepressant. With menopause I have struggled with bouts of crying for no reason. Well now there IS reason just about every day. But crying is NO help to either of us. The anti depressant helps a great deal. It doesn't make me happy. It does help keep me more even, feeling more like me. It still makes me angry to be taking a medication because HE is sick! But it helps too much to quit it. The first one my Dr prescribed didn't work for me. It hardly ever has side effects, but, lucky me, it messed up my whole system. The second one works just fine at a low dose. I was still pretty emotional and tried a higher dose for a short time. A few days after starting that I had jury duty! It was almost a complete disaster! The higher dose changed.my personality. I was fidgeting, anxious, couldnt keep.quiet, couldn't stop from rolling my eyes.at all the.stupid questions the judge asked. Of all times to get a ridiculous judge! He was a law professor who took it on himself to educate us. The lawyers were rolling their eyes, but they were not facing the idiot. I was. I was afraid of being charged with contempt of court when the defense finally excused me. When I got home I went back to the low dose immediately and it is ok still. I tell this story because it was pretty funny, but also to let you know to not give up if the first drug doesn't work well for you. There are lots to try.
Oh yeah, myrtle, the "situation" is still there after 9.5 years. So, yes it is situational depression. As opposed to chronic clinical depression. With situational, when the situation is finally removed, it will take us awhile to recover, obviously, but my guess is we won't need anti depressants forever. My sister has chronic clinical depression. This is a neurological disorder that has existed for her since birth. Only in the 1950s we didn't know anything about this. Poor kid wasn't diagnosed until she was in her 40s and even then the doctors all thought it was because.her husband was brain damaged after a heart attack and subsequent pacemaker failure. She was a caregiver for 19 years. Certainly the caregiving situation made the depression much worse. But now that he is finally gone, she still has the underlying disease. She requires medication for life to make the neuro transmitters work.
Yes, the situational depression is very real. I had gotten so every time he told me I was a stupid jackass or tried to "kill" me by grabbing my shoulders or neck and shake me, I would cry. The reality was he wasn't strong enough to really hurt me, just left bruises. I talked to my doctor and she prescribed an antidepressant, she said it would make me sleep like a baby. All it did was keep me awake all night for 4 days, called her back and she prescribed another and that was great. It just kept me on an even keel and I was on it for 4 years. After he died in July 2014 I mentioned getting off it. She said NO, NO. She said the fall with the days getting shorter was a bad time to do it and to wait until spring. The next spring I tapered down slowly and was totally off it with no Ill effects.
bhv, Thank you so much for the information. I guess that means there is some hope of returning to a non-depressed state after this is over, although I do feel that both my way of thinking and my personality have been irrevocably changed and not entirely for the better. I have become less tolerant of BS, entirely intolerant of drama queens and kings, unreasonably adherent to logic, and my humor has taken a bitter turn. Yet, in spite of all that, I'm much more patient with and kinder to other people. If I am still here when this ends, we shall see what I have finally become.
When I wondered whether there were any psychologists aboard this leaky boat, I was not thinking about the behavior of the AD patients, whose minds defy logical analysis, but about us, their spouses, who seem to exhibit some odd behaviors. One behavior that seems prevalent is the tendency to isolate oneself after the AD patient has entered LTC and the spouse is free to go about his or her life but fails to do so, and often even fails to make good use of the extra time available at home.
myrtle, I am stuck in neutral. I am over this awful journey and am still unable to move on. I worry about myself, will I ever get back to normal. I want to be alone most of the time. Why? I was a very social person before all this happened.
"and often even fails to make good use of the extra time available at home". Even now I am guilty of this.
Don't know if this applies, but I was writing on the ms. of my latest novel and noticed that my handwriting had changed. This is what I wrote on the ms. page: "I used to write with a forward slant, as if going forward to meet new experiences, but mostly new people. Now after a lifetime of experience, my handwriting is straight up-and-down. It's if I'm saying, "I'll behave decently. Let's see what you're made of."
Lisa has been in care for about 3 and a half months we are adjusting she is settling in as well as she can but still I get these bouts of sadness. Today was hard just to be with her to see what her life as become. For me I have been determined that I am going to move forward I am going to go on with my life. I felt I was ready I know who I am and what I want in life now just up to me to go out there and do it. Well I have learned easier said than done.
I met a very nice woman, we actually have known each other casually for a while. We spent a little time together about a day, it was great we both I think felt the same way. Then she needed to go away for a number of weeks. I think I started acting like a love sick teenager, not like me at all. When I came to my senses I thought what am I doing Just stupid. What I realized for the number of years I was the caregiver I got nothing very little back from our relationship, no stimulation, conversation etc. So when I met someone where we could connect it was wonderful I had been missing and needing this type of interaction for a long time. So I learned something about myself I thought I had it together but clearly I did not. I think I have a lot more to learn about myself. I hope when she gets back I can work things out and we can spend some more time together but I also know if I cannot life goes on an opportunity missed. Oh well I have gained from the experience.
I see what you mean myrtle. Psychologists CAN help the spouses somewhat. My local office on aging has a 12 week course for caregivers that gives good tips on communicating with those we are taking care of, a lot of good ideas on how to manage our stress and how to hire help. To help battle the lonliness they had exercises to help us identify small things we could do just for ourselves. I started playing the piano again, even if I can only get in one song, it helps. I don't think this situational depression will get 'burned into our personality permanently'. I like the gal who said her doctor said to wait til spring to get off the anti depressants. That was a brilliant doctor! You asked about the folks who remain isolated even after placing spouse in LTC. My DH is still at home so I don't have personal experience. I think you would be in a state of something like shell shock. I think they call it PTSD now. Psychologists are coming up with treatments that are helping Vets with this. But you don't have to be a Vet to benefit from some of these strategies. My niece is in a PTSD support group that is helping her quite a bit. Even before there was much talk about PTSD, Cognitive Behavior Therapy was found to be very helpful in many situations. This really works. You can try it on your own. There are books, many come with workbooks to help you get started. If that doesn't work for you, look for a psychologist specializing in CBT. The beauty of this is that it doesn't take forever like the old styles of therapy did. You set specific goals and a therapist or support group can help you implement strategies to achieve your goal. I recently bought "Talking to Yourself. How Cognitive Behavior Therapy Can Change Your Life" by Dr. Pamela Butler. It was ony a couple of bucks on Amazon, I think. This is a very good little book. Easy to read. Lots of wonderful examples to help you figure out how to apply the principles yourself. I need to go through it again because my situation here keeps changing. If you think you can't afford a therapist, you might be surprised. Many places have a sliding scale based on income. Many health insurances cover a limited number of mental health visits. And with CBT you won't need that many visits. If you are really stuck in that limbo, it may be very much worth the expense.
Rona, your story reminded me of a time in my college. I went to SUNY Brockport, just beneath Lake Ontario. Wonderful place, but it rained about 80% of the time. One May, it had been raining for a very long time. Then the sun came out and it was about 80 degrees. The entire campus acted like we were all on LSD!. No one could hold classes indoors. One of my professors held his lecture while we were all tossing a frisbee back and forth. Yes we learned stuff that day, but it took effort to do so. I imagine you conversations felt a little bit like the sun coming out after years of storm.
I keep thinking I am doing most things right, given the situation we are in:
I am refusing to become isolated and totally house bound.
Partner is in day program for 6 hours, four days a week.
Friends come for supper at least once a week, sometimes more. I make a meal worth the eating, and conversation interesting to all.
We go to the movies with my family once a week (although the movies we watch are now different) and we eat out with them after.
We attend church weekly and the following social hour.
Monthly we go out to lunch with my partner’s mother.
We go grocery shopping together and take walks (although both of these are getting harder).
I coordinate a monthly meals program for homeless who are in a shelter.
I maintain gentleness and patience well during the day.
Two things that need further work:
I get angry at night. This is due to being aroused at night and not having the chance to do the conscious effort of realizing that she is not intentionally antagonizing me. Also it is due to my needing more sleep than partner’s needs are permitting at this time. Possible solutions: medication for partner, medications for me, or medications for the both of us. Doctors are the ones who have suggested this. Think I will up the trazadone for my partner so she sleeps better as her doctor suggested, and take the antidepressant prescribed for me so anger is more manageable at night. Because I hate being angry and shouting at someone who does not deserve it one bit.
The future looks grim. I can’t/don’t want to be a caregiver the rest of my life. So I’ve picked a future date. I think I can do this caregiving thing for four more years. Its not quite an arbitrary date. The date, though, gives me permission to think about the future and things I’ve dreamed about doing. Doesn’t mean I can or will get to do these things, just that I’m going to give myself permission to dream without guilt. Imagine that thought.
Lindylou wrote this long response then lost it tick me off. Basicly I did something similar only looked at what the triggers would be when I said I cannot do this any longer. for me I thought it would be when she became Incontinent or when she no longer knew who I was. Neither of those happened but she did end up needing help with all of her personal care. I found I could handle that but what got me, what I couldn't handle was the emotional side of things. Last December I realized I had reached the point of burnout and I started the process of finding a placement. She has been in a facility for 3 and a half months now. I think the point lindylou there could be a danger in saying I can do this for another four years and trying to stick to that. Please monitor yourself and try to realize when you have reached the breaking point don't let it go past that.
As I have mentioned many times Lisa drilled Into me in the beginning at some point you are going to have to put me somewhere and you need to go on with your life. I am trying to do that and lindylou i fantasized about that for a long time I think that is what helped me cope. Don't get me wrong I still have tears most days, it is still gut wrenching when I see what her life has become, I still have bouts of sadness but I refuse to let those feelings own me. This is not easy but I am trying I am learning things about myself, I am ok on my own, really feel like I have been on my own for a long time. I also know I am better, happier with a partner, know that I do not what to spend the rest of my life on my own. We are not getting any younger like Wolf I am 66. So I am getting out and meeting women Don't know how this will unfold I am not jumping into anything. What this does do is give me things to look forward to, to get excited about to think about. I am not just living in a dark place. I feel the future out there is bright I just have to make it happen.
So Lindylou dream! Then at some point make those dreams a reality. If I feel I can do it so can you.
Hubby is now 3 years in LTC and when you think you are ready to place them you should of done it six months earlier! That's what a lot of us have found.
Life does go on and if finding someone new it share your life with is what you want to do then do it! We only get one chance at this life...there's no do overs...so live it well.
I have someone special in my life for the last 2 years and this Dec I plan to retire and we are going to go live and sail on his boat for 3 to 4 months in the summer all along the coast between Vancouver Island and the mainland. Then it's 8 months up in the cabin where we will spend winter snow mobiling, skiing and ..... See you can have a second chance at life there us so much to do just open yourself up to it. Dream Big and don't give this horrible disease any more of your life energy than you absolutely have to. I know if hubby could talk he would say "good girl you didn't let it take you too"
LindyLou, I too had a timeline in mind for hubby's placement, however after an unexpected hospital visit last December I began to think differently...I asked myself if a medical emergency for hubby presented itself, who would be better equipped to handle the situation...the personal care home or me? I had visions of a frantic, emotional me and how easily the situation could get out of hand and that's when the scales tipped in favour of an earlier placement than I had originally thought...hubby recently passed and because of his earlier than planned placement, he was able to pass peacefully in his room that he was comfortable in and familiar with and with the familiar faces of staff with him, and I was able to just be with him until he passed instead of racing around the house calling for ambulance etc etc etc...I absolutely love how so many of your activities include your partner and enable both of you to get out of the house
I did not interpret what lindylou said as referring only to at-home caregiving. I thought she meant that even if her partner was in LTC, she was going to bag the whole caregiving thing after four more years.
lindylou, Can you clarify this? Do you mean you are going to keep your partner at home for four more years? I hope not, since it sounds like things are already getting to be too much for you to handle.
No, Myrtle, the others had it right. As long as the PACE program can give me sufficient help, I'd like to try keeping my partner at home. Guess I'm like 29Scorpio was at first, at the present time. What boggles me is the rate of my partner's decline. Its much faster than I anticipated. I will not try to be a saint and go beyond what I feel is possible or fair for me. This woman I married 10 years ago would not not want me to sacrifice myself for her. And her lucid moments this past year (which I have spoken about) she has affirmed this. So four years is a goal, but not a mandate. But it is a goal that allows me enough light to dream, and see that there is a future for me that I can rejoice and have fun in.
For me it was hard to start friendships without him, maybe sorry that he couldn't. Also rarely did I have friendships outside of couples. Then I decided to heck with that and started talking to people with dogs. Now I have numerous people I chat with, including men, a few I am closer to than most. It is a totally new experience for me and I don't feel guilty about it.
lindylou, Your partner's activities make my head spin. It sounds like she is more active than my husband was. There are several people on this site who have taken care of their spouses at home. I can only think of a few right now: elizabeth (who is no longer on the site), MaryinPA (who is a widow now and probably taking a well-earned cruise as I write this), and LFL, who cares for her husband with the help of aides, I think. Probably others, too.
LFL, come to think of it, we have not heard from you in a while. Is everything OK?
Lindylou, yes I took care of my DH at home until he passed, but my situation was totally different than yours. My DH was nasty and aggressive for 2 or 3 years. Yes, we were always looking for things that went missing. The car keys were often gone. Sometimes on top of the medicine cabinet is the bathroom, sometimes hidden in his sock drawer and very often in the washing machine. Finally I just said they were lost and put them away where he would never find them again. Didn't want him driving anyway. I did have help in the home from an agency 2 days a week. It was a welcome respite so I could get out alone even if it was just the grocery shopping. The last 10 months was actually easier after he was confined to a hospital bed and on Hospice. At least he couldn't try to beat me up. Everyone is different, so I guess we all have to be creative in our ways of handling it.
And yes, I'm not on a cruise yet, but will be leaving on Nov 3rd for San Diego. Cruise leaves Nov 5th and goes down Central America through the Panama Canal and gets to Ft Lauderdale on Nov 20th. Home for Thanksgiving!
MaryinPA, thanks for your input. Keys, phone, and glasses now live in my pocketbook, pocketbook out of reach. Glasses went in after I found them in my partner's shoe after a long search. That was a panic. I am blessed in that there is not an angry or mean bone in her body. She can be determined yes. But never mean. She is declining so rabidly it is scary. We are talking in the car. I get out of the car and come around to help her out. She is surprised to see me. No longer sure she knows me as wife, only as one who loves and takes care of her. Want to take care of her till the end, we'll see how it goes. I do have self protective instincts fortunately. Have a wonderful cruise.