Wof's post in the Widows and Widower's thread about being imprisoned and abused by Alzheimer's Disease prompted me to write today's blog. I Invite you to log onto the home page - www.thealzheimerspouse.com - and read it. Please post comments here.
This is a good topic. I have written in another thread of my difficulties in trying to avoid becoming that abused and imprisoned animal - as hard as we try, as care givers we all seem to live, eat and breath Alzheimer's Disease 24/7. If we aren't physically dealing with a situation, such as the latest medical crisis, incontinence, pill taking, or inappropriate behavior, we are worried about some aspect of our LO's care, or trying to put into place some aspect of dealing with our LO, whether it is home helpers, respite care, a care facility, or some aspect of Medicare/Medicaid/POA etc. Or grief. One needs only to scroll down the list of topics to realize that our minds are crammed with issues with which we are dealing or with which we will be dealing in the future.
And I wish I knew how to prevent this crime from being committed in my own life. I've read so many posts, going right back to the very first ones, and they are as timely now as they were then. I've brought some to the top because I felt the need to sound off on those topics, and others have also posted once these topics were reactivated, which means the needs I have, are shared by others on this board.
I am handcuffed, like others, by what AD has done to my husband. We were invited to a friend's grandson's christening - couldn't go because my DH can't handle large groups. We recently took an overnight trip, it was too stressful for both of us, so now we are confined to our home. I can still get away for an hour or two, provided I leave a note and contact information, but I know that will soon change. Like a ball and chain, AD is keeping us together confined in an ever smaller area.
I was out gardening this morning. Something I enjoy doing, that is not AD related. Except it is, because as I was working in the garden, I was thinking about how long I would be able to keep up with the garden and still look after T. How long would we be able to stay in our lovely home. AD just doesn't seem to want to leave me alone, even in the peace of my garden, doing something I love. I have entered the prison.
Thanks Joan and Wolf, you said it all. DH is going to respite next week for seven days and I have no one to share my time off with. Not one person to go for a drive or to lunch. I have sat here for weeks now to try to find one person that will go with me but not one. Instead I have a a painter coming who will paint the whole inside of my house that week,then the next one in September, I have a company coming in to refinish the floors. Big exciting time off isn't it? The only good thing is that because of my asthma, I will not be able to stay in the house when they do the floors so I am off to a nice motel nearby. I guess I will knit and read as usual and ,whoopee I get the remote!!!! LOL
I find that because I live in a cabin by the lake land that there is even less stimuli than if I was in a town or city. Nearest town from me is 50 km and big city 150 km. Even being able to get together and see a movie would be nice. 4 hour resprite, lets see 1 hour to drive to town, 2 hours to run around and do all the errands and 1 hour to drive back. No just come and pick him up and drive him around for 4 hours that would be a break.
And now he isn`t allowed around children because of his aggression so th elost of family.
I don't know how old any of you are - I'm 63 and still working. My husband is 65 and still able to stay home alone. Were any of you working when you spouse could no longer be alone during the day? Work is what gets me through the day because my life is still reasonably "NORMAL". We have no family living around us and have never gotten involved with church or clubs so my friends are at work.
Amber and Jazzy, I know exactly what you are talking about. Right now, I can't get any respite - the agency that supplies the helpers doesn't have enough staff. Even if they could, I get 4 hours and 3.5 hours a month. Nearest town - 25 km but limited shopping and no theater or other entertainment. The last time I was able to get respite, I spent 45 minutes in Canadian Tire because I had to fill my time - then I went for a drive!. The nearest city is an hour and a half away - so, if I had respite at the current allotted amount, I could get there, do something for a whole hour, and turn around and drive back. The social worker tells me that starting in July, I've been "approved" for 6 hours and 4 hours of respite per month. What difference does it make how many hours I am approved for if they have no one to give the respite care? It would allow me to get into the city and perhaps have lunch with my daughter or son - something I could look forward to. But I am tied to my house in the country, and the rope burn on my wrists from my restraints is getting rawer and rawer.
Mawmaw, I was 49 when my husband was diagnosed and he was able to stay by himself for about another year and a half. I tried daycare for him and he was too aggressive and young for the staff to handle...he was only 52 at the time. So, at 51 I left my job and stayed home with him.....I missed my friends and work and the "escape" that it offered. But, at the time there were no other options. I was very fortunate that we had his Social Security Disability income and that he had purchased a private disability policy that replaced his salary.
Jazzy, several years ago I tried to take up knitting - thought it might help my anxiety. It does help anxiety, but only if the motor memory is already there in the brain. So I ended up even more anxious about dropped stitches and counting - haha. What a learning experience. What I did learn is that there are several yarn shops in our town and it seems that they have open knitting time when women come in and just knit on whatever and chat a little while they are doing it. That didn't work for me what with dropping stitches, counting, and trying to lip read too. But, as I read your post it caused me to remember those fireside knitting times and suggest that you might inquire about something like that in your area. There are some wonderful knitting blogs (it really is sort of like a cult, only in a good way) and knitting events all over the place if you know where to look. Knitters, I realized, fly under the radar, but are everywhere. Knitting in a coffee shop or on a park bench is sure to bring some causal interest. Good luck to you - make the best of the respite.
marche this is a bit off topic. The Charlotte airport has large white rocking chairs all over. It is not unusual to see a person sitting in one calmly knitting.
Since I love to knit, I was considering joining one of those open knitting groups. There is one that meets at Panera Bread less than 2 miles from my house. Unfortunately, it's on a day Sid does NOT go to DC. I'm thinking of hiring a "sitter" for a couple of hours so I can go and meet some new people with similar interests to mine.
Wow, this takes me back......... When Lynn was diagnosed in 2005 we were told he was firmly in stage 5 and already exhibiting early signs of stage 6. Symptoms of course started many years prior to his diagnoses. By the time I found this site in 2008 we had already gone through the horrible hurt with the early stages, the Alzheimer's devil had already entered our lives and I had already faced the losses of the middle stages.
Here it is 2013, I just turned 46 ten days ago, and I am sitting here a bit overwhelmed as I reflect on how long we have been dealing with Alzheimer's. I could choke on the word "journey". When I refer to our time with Alzheimer's I do not say our "journey", it was our descent into hell, therefore I choose to call it a war. That is what it has been for us. One battle after another, year after year, after year. Losses, inch by excruciating inch, until I thought I might completely break.
I lost many battles, but we have won some too. Even in late stage, Lynn still refuses to surrender. Alzheimer's and I have reached some sort of an agreement, a peace treaty if you will. Before when I was completely consumed in the grief and was the sole caregiver to Lynn, I was of course overwhelmed, overworked, overstressed, just over-everything! I am stronger now, I have had time to heal from the "abuse". Alzheimer's has taken all it can from me. Or rather, all I will allow it to.
Joan, if anyone did everything right by the book it was you! Clearly bringing in help early didn't alleviate the pain or the complete burnout. I remember when Lynn was first diagnosed thinking I could be just like Nancy Reagan. Keep Lynn home until the very end and show the grace she did in the face of all she lost. How naive I was. If I had the resources perhaps I could have. I think it is more than bringing in help early, it has to be A LOT of help, like live in care. And even at that, we would still have to have reasonable time away from the daily stresses and heartache.
When I was looking at ways to try to keep Lynn home I did some research on the internet. They actually used the word stingy for my state when it came to home help. I had done it all alone for so damn long that when I was offered 4 hours a week it seemed like a Godsend! But truly, 4 hours in a week that has 168 hours? Hardly enough. And I am betting I was just like many of you, I used that time to make appointments and do chores. It is just absolutely crazy thinking any ONE person can give total care 24/7 for years.
I hope you can iron out the difficulties in placing Sid soon! I truly believe it will be better for both of you. ((hugs))
I have been really pleased with my caretakers for 2 days a week with at least 3 hours each day. I can have them longer if I let them know ahead. Funny how the subject of knitting came up. There is a group who meet at the Café in our local grocery store. If I don't have another appointment on Tuesday morning, I go there to knit baby hats for preemies and chat. Very relaxing.
I have been saying I would keep him home as long as I could but He has gone downhill a lot in the last two weeks. I'd say he is solidly in stage 6 with some symptoms of stage 7. He suddenly started having days when his feet forget how to move. I picked up a walker 10 days ago and he uses it with my supervision. I've just noticed he won't even try to eat anything that needs much chewing.
Today I visited Friends Home in Kennett Square ,PA. I am looking for respite right now but have to think about placement also. After talking with the admissions person we agreed he would need skilled nursing, not assisted living. The good news is that it is a nice intimate unit with only 20 beds and there are currently only 10 to 12 residents so he could go in for respite almost any time.
I am trying not to let this disease make a prisioner of me.
Joan---Go for it. In my Thread, related to Wolf's, I tried to point up the fact that our general plan to survive requires our genuine intent to do so. I think another key to that is hanging on to every little scrap--and many are really small--of our life that we can. The personal interests, the activities at least a little. If you read--keep a couple books at hand. A coffebreak mid-morning. When grocery shopping--if you want some "Rocky Road" get it because you want to/like it. Don't leave it there because your spouse "Doesn't like it" says"we don't need it." You Need it. I couldn't keep up my knitting while caregiving, but I still looked at patterns--sometimes bought cool yarn, for later. Maintain a link to the things that matter to you, even though you can't participate now. That link may be the way back, later.
We do end up imprisoned to a great extent, but even when things have advanced well down he road,we can be just a bit stronger because we have been exercising our "genuine" intent to survive. Dementia will take our spouse. It will steal much from us, not all of which we'll be able to get back---BUT WE DON'T HAVE TO ROLL OVER AND GIVE IT EVERY SHRED OF US.
Dear Joan... My heart aches for you and so many others here but I somehow feel that I'm really not one of you. I went through most of the bad experiences but I never felt I was a prisoner. I think age makes a difference. A big difference. Remember, I'm 91 years old..... Why is it so much more traumatic when a child dies ?.....I think it's because the child has not had a chance to live. For Helen and me, the best times of our lives was when we were in our fifties, sixties, seventies and early eighties. The kids were gone. Didn't need to work so much anymore. Had saved some money. Nothing to do but have fun......and we did. To become a dementia caregiver and miss all these happiest years is not the same as becoming a caregiver after having enjoyed them. I myself, have not felt the pain of missing the good times because I have lived them, and have the memories. Now, because it has something to do with being a prisoner, I would like to resubmit an exact copy of the very first blog that I sent to this site. ----------------------------------------------
Sept.20,2011 Stone walls do not a prison make, Nor iron bars a cage; Minds innocent and quiet take That for an hermitage; If I have freedom in my love, And in my soul am free, Angels alone that soar above Enjoy such liberty. Richard Lovelace 1618-1657
I've enjoyed reading messages on this site for about a year and have never posted anything because I don't know if I have anything of value to offer. I'm a 90 year old caregiver for my 85 year old dear wife who was diagnosed with vascular dementia four years ago. I think if my dear wife was judged by alzheimers stages, she would be at about middle stage 6. We have been through most of the bad experiences mentioned in these messages and I am continually amazed at the similarity. I get the idea that some of the caregivers here consider themselves prisoners of this terrible disease. The guy who wrote this poem was himself a prisoner but he never considered himself as such. He wrote a wealth of beautiful poems while enjoying his life in prison and if you read his works you would agree. He was a happy guy! I'm asking myself. Can I be a happy guy? ....I'm trying.... After 66 years of marriage, my Helen and I have lived life to the fullest. We did it all....Family, friends, fun....and now, memories; and none of that can be taken away from us by some dumb disease. Actually, we have a lot to be happy about! I did not choose to be a caregiver. I was chosen to be a caregiver....Why?.... I like to think I was chosen because I posses all the qualities to be an excellent caregiver. And with help from family and friends, I think I have done just that. I have accepted the challenge. I have learned a lot. I can still make mistakes but I can forgive myself. I feel good about myself. What other useful purpose could I serve at this stage of my life? I think attitude is so essential to happiness; and after all, happiness is the greatest gift that life has to offer. We cannot control many of the problems that we face in our lives but we can control our attitude.
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Again, I say.....Age makes a big, big, difference.... GeorgieBoy
Georgestreit* I agree, attitude is essential to happiness, and we can control our attitude. Its just such a danged hard thing to do when we are physically, mentally, and/or emotionally exhausted...and are missing the good times. It is so hard to stay an optimist when you can't see any future.
A great read the first time and this time GeorgieBoy. I do agree with bqd, it is hard in the midst of the daily stresses and heartache to reach for the "light". But we have to! It's not a kind fact, but a true one, that we enclose ourselves behind those bars. No we are not to blame, anymore than our poor spouses are... but we do have within us the ability to break free from some of our chains, where they, do not. It would be tragic if we didn't do everything possible to do so.
Georgieboy...you better never leave us!!!! You are one of the Greatest Generation who has so much wisdom to share. Your post above is really beautiful and if we can all cultivate the attitude you describe, going through this trudge would be somehow easier? certainly in the end rewarding knowing we did all we could with that happy heart. You are right, none of us volunteered for this job, somehow even before we were born we were selected to have this challenge and maybe to learn something about ourselves and to learn to be more giving, more understanding, more of something we are personally in short supply. The human aspect, the fatigue, the isolation are aspects that make this so hard and draw us into anger sometimes at the rest of the world, people who were friends who now have no time to even send a note...you know what I mean.. I heard Jazzy loud and clear when she said she had been trying to find someone to do something with her during her respite time but in the end is budgeting for chores for the home that need done...same thing here...garden. drive way, windows and blinds, and driveway repair..then we can start on the inside of the house. And so it goes...
I am a knitter and I belong to 2 knitting groups. One meets weekly and the other 2 times monthly. They have been wonderful. I sometimes do not go for other reasons but when I do go it does relieve the isolation and provides wonderful socialization. And the best part is I am not in alzheimer land. Seriously if anyone knits check it out. Many libraries or senior centers have groups. I know Joann fabric has a group in my town. I also work but work from home so I am here most of the time with him. Work for me has also been a lifeline to normalcy. I know not everyone can work from home but it has worked for me. Yesterday he was admitted to the hospital for low blood pressure. He had no symptoms so don't know what that is about. Honestly I am enjoying the quiet. I am taking a action in July. This is the first one since his disgnosis. I have a friend to go with so I know I am blessed. There is a website called Gutzy Women Travel for those courageous enough to travel alone. I had thought about doing this before I found a travel buddy. They basically organize everything and provide detailed guides throughout the trip.
Thanks Sandi for your comments. You were both so very young. I'm worried that I will have to stop working once he can't be left alone but I do know our little town has an adult day care facility. I want to move to be closer to my son and his family and I'm trying to decide when would be the best time. I could quit working now and move; wait until I retire and hope my husband will still be living at home and make the move. So many decisions to make alone. He wants to move closer to his daughter and her family but I think I'd get more support from my son. He and his wife have offered t let us live with them but think we need our own place - just close by. I've enjoyed reading all of the posts and feel like this is a good outlet.
Joan, your blog about being an abused prisoner said it all. After 13 years of caregiving for a much-older AD husband, I am in the exact same position you are. A move out-of-state to be closer to family for "help" has proved to be a bust -- I help them, but they don't help me -- but I do love this area, and hope that in the future I can get my life back in this beautiful location. I, too, have been doing all the "right" things for years, but it just doesn't help. Yesterday on "Poop Patrol" I honestly felt that I was at the end of my rope -- I understand the blog from the 91-year-old caregiver, but I've lost the decade of my 50's to Alzheimers caregiving, and it's starting to look like my 60's are going down the tubes, too. I do a little music and writing --am learning the harp, and publish book reviews regularly. It gives me a thread to cling to, but just a thread. Thank goodness I am am even-tempered person who can handle a lot--I was a nurse for 42 years, so the hands-on care and the case management are simple enough for me to do--but even I was not really ready for the relentless, inexorable harm that this disease does to the caregiver when it just goes on forever. When I married a much-older man, this was the one scenario I was afraid of and hoped wouldn't happen...I had seen what it does to caregivers. Well, here I am. Thanks Joan--your blog is just about the only thing that really helps in terms of Alzheimers support.
I have read the posts on this topic and Joan's Blog and I can see how this AD can make us a prisoner. I, like many here struggle to keep from being shackled and chained. Like Georgieboy, I did not ask to become a caregiver, but whether I am good at it or not, it is what I have to do. I do try hard not to give up everything that defines me as an individual. Yes, I did give up a lot of the things I have enjoyed through the years to be home for my DW, but like prison, it is only temporary. We all will be released at some point if we are strong enough. The real challenge is staying true to ourselves and not losing our identity as individuals to this disease. I often wonder if we as caregivers suffer from PTSD like some of the soldiers do? Do we have survivors guilt? I am sure that to some degree we do. We suffer from the stress of seeing our love ones slowly slip away and are powerless to stop it. The demands of mentally and physically supporting our DW or DH in all their needs. I have found that I too go from periods of good days and bad days. The difference I think is that we all know what our future will bring. We will lose our spouse to this disease. That for me was one of the hardest things to come to grips with. There will be no recovery. I not only have to care for my spouse as best as I can out of my love for them, but I also have to prepare myself for what is to come. AD did not give me a choice with my DW. I do have a choice with my future. I will not let AD claim me as it's second victim. Through the help of many of you here on this site, I am finding new strength and new purpose for my life. I know the struggle continues, but I know see that there are things I can do to take care of myself and prepare. Just some feelings from my heart.
mawmaw3boys, yes I had to quit work soon after DH was dx'd. He was 58 and I was 57. I traveled about 2 weeks each month and quite frankly I probably should have quit sooner because looking back now he really should not have been left alone and definitely should NOT have been driving. By the time I quit, DH had not been able to work and hold a job for at least a year. Losing his salary first and then mine was truly a shock. Eventually he qualified for and received ssd and he has a LTC policy which helps pay for the aide (24/7) but quite honestly I worry constantly about becoming homeless and poor. The irony is that I saved money knowing I would need help in the future and I could not qualify for an LTC policy. Now all that money will be spent on him and I will be relegated to receiving medical care through Medicaid. There's something terribly wrong with that picture.
Cheval oh yes of course we have PTSD!! As for survivors guilt, well of course my guy is still alive, and in a care home. I would feel so very guilty except...I know that it was beyond me taking care of him. As for being a prisoner, ditto though our journey went so fast at home, in two and a half years from being capable to absolutely incapable.
There were times when he was home that I did feel he abused me emotionally and did not care, but of course it was just the disease and the "flatness" of his emotions. I really feel concerned for the so many of you that the journey goes on and on and on.
Joan, I am so sorry and know what you are going through. You are such a strong woman and have done everything right, but it is still no concession for the emotional pain and damage that Alzheimer's does to the caretakers. There is nothing you can do to prepare for that. If it is any consolation, life does get little more flexible when they go into a facility. Not stress-free, but you can get a little bit of your life back. Hugs to you!!
bqd - if you do get some respite or someone who can stay with DH for a little while I would be willing to drive up to Kaz to meet with you. We could go for tea, lunch, whatever. My DH is at day-away on Tuesdays and most Fridays and I would be fine to take a ride up the Gatineau. It would save you driving. E-mail me if you are interested.
I too have become a knitter...I am no where near as good as Joan but getting better. It takes time to master some of the stitches..I am still into scarves and baby blanket...
Ring, thanks for the offer, expect an email from me.
When I am at my lowest, I think, what difference does it make if i survive through this ordeal? If I die before AD finally takes my DH, it just means that he will be someone else's problem, not mine. In fact, he might be better off, as the proceeds from selling our home would mean that he could be put in a better ALF or NH. Our children are in their 30's and are responsible adults who don't really NEED me anymore, and I don't have grandchildren, nor will I ever have grandchildren.
But then, when I am feeling more optimistic about life in general, I have fantasies about living here without him. I make plans to redecorate the house, and I see myself getting on with my life and rejoining society.
I could have been the one writing what you just wrote! D isn't even to the point where I have his physical things to take care of, & I have already thought of those exact same things.....he won't be my problem anymore,although I hate the idea of sticking my kids with it. I have no grandchildren, nor is it likely that I will (a couple of steps, but that's another story!). I plan how to take my bedroom back once again, how I want to fix it up (a new queen mattress set for one thing). Then of course, the guilt settles in for being so selfish! :) I think all I can ask from this is that I will be able to live just a few good years beyond him, that I will feel some peace & calm, & be responsible only for myself. A time when there isn't someone watching every move I make, when I don't have to explain everything I do, can come & go as I please. That is my prayer...
Mim, after Dado moved out, I finally got over the sadness of the "sick room", which had been our bedroom during the happy life. I have now spent the past couple of months fixing it up, painting, new curtains, re arranging and it is so lovely. I thought I would not be able to sleep in there but I can. I also took his best shirts and clothes and shared them with his male caregiver, who is his size and in dire need of nicer clothes. lol
They would want that for us, a nice bedroom and to know that we still care about our home we shared together.
This thread, particularly, should be read by anyone who works in the AD field. Joan's blog and these comments truly reflect the mindset and emotional issues that being an AD caregiver presents. Like Joan, I considered myself following all the "rules", of educating myself, of being proactive, etc. Still, Steve's illness took a great toll on me. We are into the 8th year since dx and I've come a long way towards regaining my life and I think I'm a stronger person because of the experience, but what a price to pay to achieve that! There just aren't enough support systems in place for dementia caregivers in today's society.
Bonnie, Min, Coco - I was thinking just yesterday about what I was going to do to his bedroom and work shop and the yard. Then I thought how bad am I....NOT! I'm 55 and hope to still have another 25+ years of living in front of me.
Amber, Mim, Coco, I don't feel guilty when I fantasize about what I would do to T's bedroom, my bedroom, the den. When we moved in to this house, I gave my DH the best bedroom in the house - beautiful view of the lake. I thought he would enjoy it. He keeps his drapes drawn. LOL!
If I get through this odyssey with my health intact, I'll take over his bedroom as my own, and keep the drapes open wide!! turn my bedroom into the guest room, and the den will become my sewing room. I'm only 61 so I also have a lot of living in front of me. If I want to survive, I can't dwell on what is past, or even on what is today, but I also have to think about the future.
Like the rest of you, I feel sort of guilty thinking about what I would do to change things in the house later... I like my bedroom as it is though I would take over his dresser and closet, share his clothes with his brothers or nephews who might be his size ( he would want that) after I select a few things for myself of his to keep and to give the girls if they would like a favorite shirt etc of his. The one funny thing is there are some things of his that I have never liked and yet now the idea of getting rid of that sort of thing is hard...odd huh..but it is sort of like getting rid of the things he cherished...Guess that is what a garage is for LOL! All of this is hard...
I was having trouble with Dh's clothes in the closet. Every time I go in there for my things I see his and get upset...we shared the same room until he was placed. I have been having counseling...and I was told it's Ok to move his clothes out to another room, it's moving on and accepting what is. It was hard, took me a while to do it. I now have so much more hanging space and empty drawers. What he is not going to need I have given to charity. Now if only I could get his shed sorted and cleared...I could open a hardware store with his tools and things...a tool for every thing, three Triton work benches, must have the right tool he used to say.
Julia - yes I can relate to all the tools and power tools. Like what am I ever going to do with a big compressor. I don't have anything to nail with it...maybe blow up a tire? With the size of it I really could BLOW up a tire. LOL I've slowly been getting rid of things like the camper, boat trailer and am making a list of the stuff I will never use. But I hate to sell it because I won't get a fraction of what I paid for it. Maybe trading for other stuff like labour to build a greenhouse.
Bonnie - I had to laugh about the bedroom...fiqures eh! I got the big bedroom with the view of the lake and if he got to the point he couldn't of climbed stairs then I would of had to give it up. Glad I don't have to do that.
My husband and I have been married 16 years - each with a grown child from our previous marriages. The lst few years (before AD) were not the best and I was getting ready to leave him when he was diagnosed. He's a kinder person since his diagnosis (surprising) and we co-exist. I've always planned on moving from AR when I retire and hoped to move closer to my son and his family. My husband wants to move closer to his daughter. So, it looks like when we sell our house we'll be going our separate ways. I'm trying to figure out why I feel so guilty about his daughter taking on the responsibilities of her dad's future needs. She has a young child and a special needs step-son. I've always thought I'd get the mental support from my son and his family that I'd need as a caregiver.
Mawmaw, it sounds as if you are making big decisions. Throw this in the pot to consider: the stage that you're in now is the hardest. Their behaviour - and probably for a few years back - have made them difficult and ornery to live with. It's the disease in many of the cases. A few of us have been in the same boat and were getting close to leave. I've asked myself if I have known what was ahead of me dealing with his Alzheimer's, would I have stayed? I would have. As Coco has said, dealing with the disease has made her much stronger than she ever was. It's a tough decision. A stress counsellor helped me.
I have read and re-read what both Wolf and Joan wrote. It's horrible and brutal and devastating—and perfectly mirrors my experience with this disease. It's been over a decade now since DH was diagnosed, with quite a few years before that when we knew something was wrong, but didn't have a name for it. (DH was 54 at diagnosis, and I was 52.)
Now I sit here in this house and wonder where my life has gone. I have been mentally and emotionally crushed by this experience. And my physical health has declined even more. Most of both of our families have distanced themselves from us—in some cases quite like rats fleeing a sinking ship. We are in the process of losing our home. And one of the most painful parts of this whole thing is that it seems like we are not supposed to talk about it. We are suffering every day, year after year, yet everyone expects us to be normal. At this point, I barely remember normal, and I certainly can't reproduce it.
I really don't know how you are supposed to live through something like this and then just pull yourself back together and go on with life. Unless there is support and caring from other people, I question why somebody would want to.
A couple of weeks ago on another Alzheimer's site, someone wrote "each of us is EQUAL. No more sacrificial lambs". Maybe my life would be equal--if I had one. As it is, almost my whole existence is solely to meet someone else's needs. That is not healthy, and it's not right. I don't believe that we should have to completely destroy ourselves in the process of caring for someone else. But that seems to be what happens to quite a number of caregivers. Of course, it's only the caring caregivers who are destroyed so completely, because we love our spouses, and work very hard to give them good care. If we transferred their care the minute we got the diagnosis, and went on our way without a backward glance, the disease wouldn't tear us apart this way.
I can't get that quote out of my head: "Each of us is equal. No more sacrificial lambs". I think I found that for a reason. For many months I have been wrestling with the issue of placement. Last September (it feels like years ago now) I wrote on the topic "giving myself permission to quit". But I just couldn't do it. But it does get to the point, like Wolf said, where you feel like "an animal that has been pushed beyond all limits". People do sometimes completely break down both physically and mentally. I see myself very close to that point now. If I'm ever to have any sort of life again, either now or in the future, I can't afford to go much farther in the direction I'm headed now. I just wish I didn't feel like I was ending DH's life to save mine. Rationally, I know I'm not. But that how it feels. That's what makes this decision so hard.
I agree with Mary. Get him placed as soon as possible. You need to do this now or you may not survive. Don't let this destroy both of you. HUGS and more HUGS>
A few years ago I wrote down some quotes people had written here so when this time came I could reread them to keep myself focus:
I have the responsiblity to ensure LO is taken care of....but I do NO have a responsibility to actually administer that care myself, in my own home.
In fact my home care may not be as good as LTC, simply because one person cannot do it alone, nor am I trained in the proper procedures. Perhaps I am actually doing a disservice to my LO by keeping them at home.
I accept the responsibility of my LO care when we married them. To make sure they get the right care whether it is by me or someone else.
When I can no longer keep my LO safe at home and no longer feel safe with my LO at home, it is time to put them in care.
I went to a counseling appointment last week and my counselor told me that he'd just returned from a conference. He asked if i knew the most stressful job? He then told me it is an Alzheimer's Caregiver. I told him that any Alzheimer's caregiver knows this but also knows there is little help to be had. We're going through the driving/no driving ordeal now. My husband has younger onset and has been doing okay. He took a driver's test and failed. It was by a private therapist that the Alzheimer's office recommended. I've been keeping a close watch on his driving and he's still okay. The guy came in late afternoon after a busy morning and gave him an hour an a half cognitive test and then took him driving in the guy's car for an hour an a half. The car was equipped with the 2nd steering wheel, etc. My husband felt that the brake pedal felt like it had a softball under it. My only complaint is that I think that the person should be aware of the people they serve and schedule accordingly. Val
VAl, even though you think he is OK, check with your insurance company. Have you reported his Alz dx to them. If not and if he is in an accident, they might refuse to cover him and you could lose everything in a law suit. This situation varies by state and country so you need to check this out yourself. Some insurance companies will remove him from the policy immediately, others won't do anything, others will want an additional evaluation.
I woke up this morning from a dream (nightmare?). In the dream, my DH and I were at a dinner/dance cruise of the Montreal harbor. Five of my very good friends were there. They had been talking to the organizer and discovered that the boat we were on was available for a week long cruise to Quebec City - minimum 6 people. The organizer extolled the wonders we would see as we cruised the St. Lawrence from Montreal to Quebec City. I kept looking up behind me where I could see my DH starting to fidget and pace, knowing that it would soon be time to leave. My five friends all wanted to take the cruise, and I stood there and gave them every excuse I could think of as to why I couldn't take the cruise - doctor's appointments, having seen the scenery already from land, etc etc, and they kept trying to convince me to go. I finally blurted out that I couldn't go because T has AD, and I couldn't leave him alone that long. The organizer didn't think that was a good excuse, and my friends just started to get pissed off with me, because not only was I depriving myself of a pleasurable experience, but I was denying them as well. Hubby and I left, and at that point I woke up. This dream says a lot to me - we have to deny ourselves because we are caring for our LO's. But we may also be keeping our friends from enjoying our company (fourth for bridge or a game of golf, lunch companion) because we are tied down. After awhile, the friends will stop asking us to go with them or be with them, presuming that we will say no. And then we are left in solitary confinement for the duration of the disease, unless we can find a way to rejoin our friends before its too late.
bonnie - I can so realate. Now that a couple of my friends know he will soon be placed they are saying "now we can go and do .......". Just as if they have been waiting for me to be finally free of daily care.