Ladies, I can relate to the lonliness and isolation. We have EOAD and it's clear to me our early onset is moving very quickly. By the time I put my wife in a nursing home she hadn't spoken in some time and was quite unaware of where she was.
I think CO2 is right that we have to focus on making a life for ourselves but I think it's important that we also realize we have gone through a lot and need to focus some of the understanding and care now on ourselves for that reason. We're the ones who have to try and heal in time from what the disease has done to both of us.
I placed my wife 2 1/4 years ago and I found that I survived the first year and it got better in the second and I'm now pushing myself to rejoin life more fully than I have been in the third. It's this year that feels like much of the grieving and acceptance has occurred where the lows and bad days are less and rarer; and, that I have more normal feelings and reactions to my life overall.
It all has fairly steadily gotten better as I got used to it all more but I am finding too that while the people and the things from before are largely still here - I have changed. It's in this year that my body and mind want to do something for it's own sake and that my thoughts about all that feel like the kind of normal I remember. But the life around me is definitely not the life I once. What is on offer is something new if I find the courage. And by that I mean go out the door and discover who I am now.
I hope that each of you ends up doing better than I did but I am also satisfied by what I did. There is a life here and we really do have to deal with the serious reactions to what we are going through - but we can take the steps we can in the moments we can where in each case I had to re learn to enjoy things we once did together by myself. I wish you all well/
Wolf, thanks for your encouraging words. Knowing that things will get better is very good to hear. I know I need to move on but find it difficult to step away from the responsibility even for a short time. Last summer I took a vacation but this year do not have the money due to Medicaid, taxes and legal fees. I am determined tho that next year I will go somewhere. Not knowing how long this journey will take is depressing sometimes but there is nothing I can do about it. I focus on just one day at a time because anything else sends me into a mental and emotional fog. I am grateful that he has adjusted to it and that he has not exhibited many of the behaviors I have read about on this site. I find myself loving the quiet of the house and being able to come and go freely. It did take a while to get used to a quiet house but find it wonderful now. I know that is progress. I am still plagued sometimes with the thought of what my kids will think if I start going and doing things other than caring for their dad. Need to get over that too. I am curious how some of the others feel they have changed since starting this journey. Many people say they have changed and I am curious to know how. Thx for listening and my best to all.
This all resonates with me too: the limbo, the listlessness, the problems focusing, and finding joy in something. I am tired and discouraged. It seems that for every step forward there are two backwards. Some days I barely get out of bed because what's the point? Another crisis? DH is only 64 and has been in ALF since October. He is mobile and the staff aren't used to such mobility, so I often get reports of "behavior problems." This behavior is typical Alzheimer's, but I have to steel myself every day when I go in for the "reports," as if I am expected to fix the problem. My days are pre-visit, visit, and post-visit - all of which is emotionally draining. I never stay long enough for him, but often too long for me. Move on, you say? It sounds good, but I just don't know how and certainly don't have the energy.
As CO2 said, I also love the quiet of the house and the ability to come and go freely. But I am tired of taking care of people (as I seem to have done most of my adult life) and a little angry that I have this bad karma bull's eye. I do count my blessings and realize that there are many. It IS hard, though, to look around at other people who live in the regular universe (not the AD universe) and not feel a little resentful. There are so many balls to keep juggling in the air and no choices or help and this seems to be my lot in life. Some days it all seems pointless and endless.
I, too, understand the feeling of being lonely. Like so many others here I grew up in a big family , married at age 18. March 29th, 2014 was the third year of my DH being placed in LTC. Never dreamed March 29th, 2011 would be a date to remember. I do not see any mental or physical decline in DH in those three years. Still walks constantly in his merry walker and eats all they feed him. I do not miss the caregiving part but the aloneness makes me sad or perhaps still a bit guilty for placing him. I try to make myself do something everyday to get my mind off of this nightmare of ALZ, but I'm an ornery old cuss and some days I just refused to listen to myself! It's comforting to know that I am not alone and the wonderful people her understand. Let's keep on trying!!
AliM--Hard to believe your husband has not declined in 3 years. It may be that you are too close to the situation to see the decline. I can see my husband's decline in 7 months. He can hardly say a coherent sentence anymore and does not know my kids when they visit. That was not true 7 months ago. Marche I think the calls will decrease as time goes on. that was the case when I first placed my husband--they were calling all the time. it takes a while for them to learn how he acts and for him to adjust. Some people it takes longer than others. AliM-thanks for the encouragement. Tomorrow is a new day and we will keep on trying. God Bless.
AliM, CO2 might be right, perhaps you're too close to the situation, but I can tell you my husband plateaued while in mid-stage 5. Small changes, but nothing significant or dramatic, so really it was life as usual with few changes for about 2 years. Enjoy the "non-dramatic years" while you have them...it changes without warning and can be quite the roller coaster ride (or worse!),
C02 and LFL, I would think that I was too close to situation to notice changes but DD, DS, and DH's brother and sisters see no changes either. He did not feed himself, did not communicate and was totally incontinent before he was placed. He did not recognize anyone but me before he was placed. It could be my imagination that I think he still knows that I am someone he recognizes. I know I could get a call anytime that he does not want to get up and walk or that he has stopped eating. That is the nature of the ALZ beast. No warning signs in behavior changes. Thanks LFL for encouragement to enjoy these years of no drama. I feel that the years have been totally empty for him and me. Just the walking and the blank stare with no signs of emotion whatsoever. NH visits are depressing for me and coming back to the house is lonely. Oh well, nothing to do but keep on keeping on! Thanks to you lovely friends who understand. I appreciate you as this board is my lifeline. (((Hugs)))
AliM-- I also get depressed when I visit. How often do you go? I am going twice a week and Saturdays try to spend most of the afternoon. I do not mind coming home but do not look forward to going. I need a break from the routine but trying to figure out where to go that I can afford. I just keep wondering how many years this is going to take. I hate this disease.
C02---I usually visit 3 to 4 times a week and stay between 3 to 4 hours each visit. I do feed him his dinner when there. Otherwise it is just walking the halls with him and occasionally getting him to sit on living room sofa for a short while. Since he is silent and I have accepted that, the behavior of some of the other residents leaves me depressed. The facility has dementia/ALZ patients as well as stroke patients, diabetics and heart patients. The ones with their good mental faculties are the cruelest and most belligerent. I have made friends with some patients. Some diabetics and stroke patients constantly yell about going home but their families will not or cannot take care of them at home. Several of the men constantly curse about being in there with all the crazy(ALZ/ dementia) patients. That hurts. After some visits I get outside of NH door and say Thank God. That visit is over with! That is probably mean of me. I am also determined to go somewhere this summer. Just haven't decided where or how. DH's grandmother was placed in an ALF after 10 years of diagnosis with ALZ at age 82 and lived until she was 99! That's frightening to me. I am with you on hating this disease. We cannot change our loved ones situation so we will just have to continue to work on changing our own situations, but that is easier said than done. Take care.
AliM, You go more than I do. In the beginning I was going every day but I quickly learned that was way too much. I had a friend who suggested 2x a week and to think of it as a part time job that I have to go to. When I am there I give him my full attention and when I am not I am trying to focus on a life for myself. Easier said than done. He is in a locked dementia unit with about 20 residents. They have activities but he does not participate and spends a lot of time napping. I tell myself if he were home he would be doing the same thing as I feel much of the time that it is my job to find things for him to do but there are so few things that he can do. He used to be a reader but cannot read anymore so I read aloud to him from history books which he likes. Sometimes I will take something to eat. He loves sweets.
When I placed dh in alf in Oct. I was there at least 6 days out of the week. By December nature took that out of my hands. From Dec. to now we had two storms a week, driving was difficult for days and my kids told me to stay home lest I fall and they would have two sick parents. There were weeks this winter when I saw dh only every 5 or six days. I felt so guilty but I can honestly say dh never realized I hadn't been there. He does know me as a familiar person. When I leave I say I am going back to work, the office, shopping, to auto dealer. I never say "home". He looks out the window and sees my car but doesn't recognize it as such.
Like some of you, I sort of dread going to see him mostly because I worry that he may have declined more or done something anti-social. I stay 2 to 3 hrs. One day they told me they caught him standing on a wobbly ottoman removing the glass globe from the ceiling fan in his room. Another day he decided to remove all the heating floor vents. Probably wanted to clean them. He is mobile, does go into the other 5 resident's rooms which angers the ladies so he in turn gets angry with them. Just like a bunch of kids. He has nights where he doesn't sleep at all. Nothing helps.
I have finally gotten over the feeling that he is in the bed with me or sitting alongside of me on the sofa. I don't expect him to walk into the room anymore.
The company which owns dh's residential alf also own two others. I am the only spouse in all three. I am thankful I can still watch out for dh. It is so hard but it is a labor of love.
Yes, I really think it is easier on me when I don't see dh every day or even every other day. I don't think being there all the time is really any better for them. Not when they can still feed themselves or do other things. DH can still read words but doesn't comprehend. Was never much of a reader so he wouldn't listen if I read. Never read a fiction book in his life; only the newspaper and engineering manuals.
I know I will have to make some sort of life for myself. I am still disposing of a lot of dh's things and that breaks my heart. Some days are spent just mopping up tears. I don't expect that will change for a long time.
There are two things going on at the same time. The first is that your husband is now in a place professionals can care for him 24/7 which is what most of our spouses eventually need. The second thing is that we are now faced not just with being alone and trying to take any step there, but also having the reactions we have pent up from often years of not having the time or cycles to begin thinking about what has all happened to us.
While it has to be our own choice how often we see them - the truth is they will know us or anyone less and less whatever we do.
We can't avoid what we will go through as our feelings come out. One of them will be guilt where many have a problem with that word but it creates tension that we get to live and they do not - however hard that is right now.
There is only one truth eventually. That the best we can hope for is that the surviving spouse eventually gets on their feet ok and finds ways to go on.
We all say we would want our spouse to be happy afterwards but it's a blind spot that what that means is you happy afterwards.
I also think there is a balance where visiting is not letting to, learning to let go, and eventually finding a working balance where we are visiting and watching over them but where the other side of that is we are coming to understand that the only life ahead is ours and step by step we have to work for that.
I have very little to add to this great conversation this morning however wanted to let all of you participating here - you could be writing my story. I am SO grateful to all of you. My husband also went into care 2 1/4 years ago and I am just now starting to find some wobbly feet underneath me. They are very wobbly and I have a long way to go. I so agree this disease totally changes us. I took a gigantic step the other day and brought home an almost 2 year old rescue cat. I always had cats and when our last one died unexpectedly, we did not get another. Truth was I was afraid of a cat's safety with the changes I was seeing in my husband. That was in 2007. It is so great to have another living, breathing, little soul with me in the house. I see this as a big step in trying to move forward in life and embracing things dear to me. Blessings and love to us all.
katherinecs--I have heard it takes a while to start getting your bearings after placement. I am not there yet. I still feel incredibly burdened by the whole thing even tho he is placed. We had to put our dog down last summer because she was ill and he could no longer help with her care and of course it all fell to me. I have throught about a small dog but right now I like having the freedom to come and go and no pet expense. I have never been a cat person but I am happy for you. My sister told me she read an article that said the average journey for a person with Alz is 12 years. If that is the case, I have a ways to go. So far my husband has not done anything antisocial except empty his closet and change clothes 6 different times. I am so grateful the weather is improving. It does help.
It's now 8 months for me since placing my wife, Clare, in an ALF. I used to visit daily from 3-5 but now go daily from 3-7 because her worst time was from after dinner until the 7 p.m. activity ... she was very anxious, missing me a lot during that 'dead time' and asking an aide to call me so she could speak with me. The social worker said Clare was in need of 1:1 attention during that time and asked if either I could stay or hire a 1:1 aide. So now, when not taking her out to eat, I bring a 'bag supper' to eat in the adjacent room and when Clare is finished eating we go up to a lounge. I watch TV while she cuddles in my arms and usually falls asleep. I had a delayed bout of depression ... after 7 months ... but fortunately climbed out of my pity party after just one week and have now gotten my act together to continue with my newest 'new normal' as a mostly single person. It's still not easy ... but it is what it is.
There is the loneliness that comes with living with our spouse at home and then there is actually being alone once we place our spouses. It can be overwhelming at first. Feb 17th marked 5 years for Lynn and I.
5 years!!!
At first it hurt so much I honestly didn't know if I could survive it. It was like a death in many ways..... and I went into full blown mourning for about 18 months. I was still mildly depressed for about 6 months after that. So that is over 2 years trying to come to terms with having to place the love of my life in a nursing home.
The way I figure it, it is suppose to hurt when we lose our spouse. I "allowed" myself to mourn the monumental losses. Only then did I start the healing process.
Now here we are 5 years later and though I am still sad to have lost so much of Lynn, I am all in all a pretty happy person again. I long ago stopped wishing for what once was and instead have chosen to treasure what remains.
I still go to see Lynn every single day. Our time together remains the highlight of my day, my life. At first it was all about Lynn needing me there. Which was true, but now it is also about me needing to be with him.
I am older than I was when Alzheimer's entered our life over a decade ago. I am now 46, and though many tell me I am too young to live my life this way ( the nerve of them!) I truthfully say I could happily live the rest of my life, just as I am right now. I pray I am able to in fact.
The way I see it, I have the best of two worlds. I am able to go visit Lynn rested, he gets the absolute best of me every day. The time I am with him is all about making him as happy as I am possibly able to. In doing so, it also brings great joy to me. Then when I leave, the rest of the day is mine to do whatever I want to do. The key is working towards wanting to..... that took a bit more time for me.
Here is the thing, we must try to remember that our spouses once loved us as much as we love them... they would WANT for us to try to find happiness again.
My best advice would be to go as often as you need to go in order to bring peace to your heart.
Acvann, this comment made my heart melt "I watch TV while she cuddles in my arms and usually falls asleep." Precious time together, I am so happy that you are still able to cuddle ♥
AliM, I wouldn't worry too much about not seeing your husband decline. Many of our spouses have plateaued for years at a time. Lynn has held steady for over 3 year now.... and this is after Hospice told me had maybe 3 months to live. Ha! He is actually far better now than he was in fact.
Hang in there.. I wont say it gets easier because there is nothing easy about this damn disease! But it does get a bit better... As with most things in life, the longer you deal with something, the better you are able to cope. Try to be gentle with yourselves...
Thanks Nikki,I feel the same way you do about having DH in a NH.It is only a year but I have come to terms with it.I usually don't pay much attention to my horoscope but todays said it is time for me to be more self sustaining and that would be a good thing. I think I had been disappointed that our children had not offered me much help but now I will have no qualms about making it on my own.It is so true,Sonny does not need me as much but I still need to be with him , the NH is h is family now and they tell me how much they love working with him. You are to be complimented on your dedication.
I find that I'm feeling worse as time goes on. It will be one year on May 11th and I feel less interested in the world around me. Hard to be anywhere but with my DH at his ALF. It is only there that I feel a bit of happiness and peace. They are wonderful and he is content but when I leave him, the loneliness overwhelms me more often now than before. I am allowing myself to feel the grief and sadness without any restrictions. If I don't want to leave the house or get dressed, I'll let myself have a day of that. Maybe this next year will take me to a place where I don't focus on what we have lost, but what we had for 21 wonderful years. I am also hoping that the winter is finally behind us, so that I can garden. That is the one thing that I know will sooth my soul.
Nikki, it is good to hear from you and I'm glad that you are happy.
Nikki,Thanks for your encouragement. We share the hospice part in common. DH was given ( by 4 different doctors) 2 to 3 weeks to live. I am grateful they were wrong. Since, he has been strolling around the NH in his merry walker for a long time and I believe enjoying it. I hope to trudge along and get to the acceptance stage that you and yhouniey have reached. It gives me hope even though I am and extremely slow learner! Fiona68 I was also much worse off after the first year of placement. It has now been 3 years and I am enjoying more of my life. I hope you can find one tiny thing each day that will help you make progress. We all know every former fulltime caregiver deserves some happiness in their life. Thanks to all for the sharing and caring I receive on Joan's site. Wishing happiness for all.
My first year was very difficult too. I think it's very important to allow yourself certain things at certain times because it really is the first step of finding ourselves. Thinking in terms of allowing ourselves is self determination.
I've been alone over two years where in all honesty the first six months are the only six months in my life I can't spend time in and remember things. I was a complete mess. In the second year every few months I announced that I was all better now where the truth is things are still evolving today. It took me time to realize I wasn't healing back towards what I was - I was healing towards what I am now and that's different.
I've been trying to spread what I think is one of the keys which is getting to know what we believe better. I know why my best summer in a long time is ahead of me. Because I'm looking for it and I believe it is there. Specifically I'm going to make sure I do a lot more things than I did last year. Also, I'm no longer treating myself as a patient. Instead I'm pushing myself. I've learned as I described in the posts above how to be understanding with myself and learning that has become so fleshed out over these two years that it's part of my constant internal chatter now.
That voice is actually just a learned thinking mode which concentrates on helping me, protecting me, and most importantly being fair to me. We have to decide for ourselves whether we believe in such a thing and it's as simple as demanding of ourselves that we be fair to everyone including ourselves but also that we want to know the how's and why's. The dumbest among us has a very good brain more willing to work with us than many conceive or wish to - but it's actually holistic in any philosophy. It's just another way of trying to achieve something. Tell your mind what you want to know or solve.
The mind is us anyways. It works in such close harmony and it is you. The only issue is that "you" are part time and the mind is full time. You don't really want to remember to pump your heart every time, so...there is a separation between the soul and the body or there is a separation between the concious mind and the full mind.
Either way when we conceptualize things the mind goes to work. I want to remember more about the way we met or that trip we took. Tell the mind what you're looking for and watch what happens. It might take days. It might come right away. Your mind has a complete record of every moment you've ever lived in all five senses. "You" do not.
Our minds also know how completely we've mangled our memories and can keep all the stories straight simultaneously most of the time. That's why we suddenly 'realize' something. An event or cumulation of things has caused us to jump from our concious story of things to the actual record within our library. Our full mind even knows whether we actually want to remember something or whether we want to remember the distorted version or whether we shouldn't really remember because of associated pain.
If you read in a book the things someone did for love and it was exactly the things you did, would you see that? Not so easy with depression, grieving, anxiety, and the other horsemen galloping around. Like guilt. I've learned something about guilt in the context we experience it which is that it means I have something of value.
I believe acceptance and most of the other words used are like adjectives. They describe a state because they are not the state. Believing is the state. When I believe in the value of the garden I build the garden and when I do not there is no garden.
I have built a relationship with this thinking which can be simplified to believing in life and helping myself want it. That was the hard part. Learning to want it. I think that gets built up stone by stone where each thing we value and appreciate and know we do is a stone whatever size.
Time does heal. Compared to effort, repitition, honesty, willingness, desire, and a vast host of others - it's like watching paint dry and doesn't come with a guarantee.
One more point. When you did the things you did that went way outside anything you dreamed you could do or would do (childbirth aside) and you were feeling that you've had enough of this or were at wits end and couldn't even think like that but got through the things anyways - our full mind was aware of all of this.
That part that triggers to a word in a commercial and brings it to our attention because we were wondering something about what that is where we didn't actually say "watch for this" but our full mind knew anyway. I know of no current religion or philosophy that disputes that the brain is part of the body and the mind resides in the brain. Through that relationship we remember to be careful cutting with the knife in the kitchen and through that same relationship of ourselves and our mind we develop our beliefs and our behaviours and our goals in life (such as being a good parent).
Learning how better to use all of ourselves is the topic. And yes I have some proof. Are you strong or are you weak? We are all these things at once is the answer. But are you a strong person or a weak person in the sense it is asked here? You are so much stronger than you give yourself credit for and the proofs are all around you but "you" are not believing that. Don't worry. Your full self has your back. It is the concious mind, it is the soul that might learn we are actually strong. And it is the full person that is actually guarding from too much and steering thoughts - because 'something' is doing that we might notice.
Pro athletes learn that pain is growth and search for it. Dementia survivors learn courage and strength from caregiving (pain) but that has no bearing on our self image or awareness. Sad really. It's that bloody concious and self effacing mind deciding what is and isn't proper. Can't blame anyone. That's it's job.
We allow the garden to soothe us othewise it does not.
Wolf, I enjoyed your words of wisdom. I am going to try the healing forward to my life that is and not the impossible healing backwards toward the life that was. If I could just get a grip on the galloping horseman "Guilt" I think I might have a chance at success. I don't think time will ever heal my broken heart but I do think time will help smooth the edges of the hole that will always be there. Abe Lincoln once said something like, I reckon we are just about as happy as we make up our minds we want to be. My mind just won't cooperate with me, yet!
I am curious to hear from others who have their spouses placed if you think the disease is progressing slower or faster than before they were placed. I know everyone is different. I spoke to the nurse about possibility of stopping the Exelon patch. the nurse told me that only 2 of the patients on his unit are on the patch--that most have Aricept or Namenda. He has been placed about 8 months and has adjusted. He is declining I believe at a faster rate than when at home. of course when he was home, he was there all the time and it could be that I did not notice it as much. He has been on the patch since 2008 and I also wonder what affect taking him off the patch would have. If it is not helping, why take the medication. What I notice is he memory is getting worse. I told him my mother is coming to Visit for Easter and he said do I know her? I asked him if he knew me and he said no but he knows we were married. Go figure.
My husband has been in LTC for about 5 weeks; before that he was in respite for about a month and a half. He hates it, and has not adjusted. I’ve noticed a big decline; trying to express what he wants to say, and word finding are extremely difficult. He stopped Aricept about a year ago because of side-effects. I’m hoping he will improve with time, and adjusting, but think he may never adjust. DHs memory is very bad, but if I run a DVD of his life and our time together, he seems to brighten up and says he remembers things and people (no names though). He knows faces, but names and relationships are, I believe, gone.
I was told that the progression might be faster initially after placement. As caregivers, placement has changed our perspective also, so it is a difficult matter to assess accurately. As the disease progresses, though, the patient loses what little awareness he might have had of his loss and that is rather a kindness of the disease. Not for the caregivers necessarily, but a blessing for the afflicted.
An odd thing: DH was placed last October and seems to have lost most cognitive ability except that he could tie his shoes!! Last week he tied one shoe, stopped, pulled the strings on the other shoe as if to tie them, then tried to tuck them in the shoe. When I asked him if he could tie his shoe, he said no. That quickly. This week the ability to tie is sporadic. Several years ago, in the middle of signing a group of cards, his individualized signature changed half-way through to the signature of a third-grader. And, that quickly, that ability was gone and never returned.
I must be where Wolf was two years ago wandering lost in the wild wood. Where is Beatrice when you need her?
Marche, my husband can still tie his shoes which surprises me but has trouble zipping his jacket. My neighbors husband is still home and he brushes his teeth constantly whereas my husband cannot remember to do it and needs someone to put the toothpaste on the tube. I think one of the more difficult things for me is that he is aware of what is happening and cannot understand why he needs to be there. There is absolutely no awareness of what it does to me.
My DH is much better physically since the stents were put in last month and right now he is doing much better. He is not so volatile as he was a few months ago but his memory is worse. He refers to his LTC as a prison but he can't go out alone as he has no In site and no sense of danger.
Wolf thank you for your comments regarding your yearly changes. I had thought I would accept my new life fairly quickly and have been feeling upset because I don't feel like moving on so fast but you have helped me see that these changes could take longer. We all move on at different paces.
My wife is in better physical shape since moving into an ALF. Despite her complaints of no gym or swimming pool she is able to walk much farther than when living at home. She has advanced from walking 3 blocks with complaints to walking a mile.
In some areas she is doing worse and we think we moved her just in time. No loss of ADLs (though some nighttime incontinence) but her moods are worse. She keeps calling her ALF a prison (and she can leave to take walks on her own), that she has no friends (everyone is old and stupid), and hates the food. I am believing that the ALF is not providing enough structure and am exploring moving her elsewhere.
I think when we are with our loved ones 24/7, 365 days, we see the major declines, but don't notice the subtle declines that people who aren't around them all the time see. I was able to keep Claude at home until the end. Because of another health issue, we had a home health RN visit once a week for several months. Just seeing him weekly, she started noticing some of the declines I couldn't see plus she noticed I was about at the end of my rope - I didn't realize how bad a shape I was in. She contacted his PCP who ordered hospice for him. Hospice was wonderful.
CO2, I've been giving your question some thought because at first I'd have responded that he doesn't seem to be progressing much, now that he's in an ALF. But after some thought, I remember the reports I get from the staff about problems he's having with ADLs and cooperating with staff, plus the fact that he's pretty much stopped talking at all and wants to spend a lot of time in his room in bed and these are all changes in the past 11 months.
What I do realize is that I don't focus on the changes as I did when he was home and I was trying to gauge his decline. I just 'go with the flow'. It's easier on my heart.
I agree that most will show some decline when they are placed. Maybe more so if they are aware enough to know they aren't home. Lynn had a steep decline at first but once he transitioned he leveled out. I do believe that Lynn is doing far better in the facility than he would be doing if he had stayed home with me. I simply can not possibly provide all the levels of care he gets there. He gets OT, PT and RC.. he has a doctor on site, registered nurses, licensed nursing assistants, a dietitian etc. etc. Plus there is a lot to say about the stimulation of activities available to them. He LOVES the live music and entertainment they offer. These are all things I just could not provide for him at home. As much as I miss him being home with me, I know with all my heart I did what was best for him. There is at least a measure of peace in that.
On thinking back over the past week I realize that the anxiety DH exhibits is especially stronger beginning about 6 p.m. (I leave about 8 p.m.) He begins asking how much longer I will be staying, where I’m going, etc. etc. I requested Ativan for some episodes where he is so anxious, says he’s finished, can’t take any more, etc., that I’m afraid he’ll have a heart attack. Got a script for Ativan every 6 hours where needed, but only used twice in the past 4 days. I was told it is a chemical restraint, and I need to approve its use. My thinking is that it is similar to having a glass of wine to calm down. Anyone else having similar problems? Would appreciate any comments, suggestions.
We were accepted into another LTC (much more pleasant, and not so depressing). I’m afraid of the move, but think it is best for him.
marg, I am sorry to hear your husband is having a tough transition. I remember when Lynn was so anxious, it was like he was uncomfortable in his own skin. I medicated him. Not for my sake, but to bring some peace and comfort to him. It is one kindness we can bring them if and when they need it. Have you talked with his doctor about his anxiety? I hope they can figure out the right cocktail of medications to bring your DH some relief and comfort. ((Hugs))
Nikki, This is exactly what I have been trying to do. Once they enter a facility, though, the facility doctor is in charge, and outside doctors cannot interfere. The facility doctor has been on vacation most of the time we’ve been here. When we first arrived I asked for a short meeting, but he was too busy. I finally did insist on having them phone the substitute doctor (a good man) for the Ativan about a week ago, but had to go through our family GP to do it. Don’t want to interfere again because that may cause difficulty between doctors, and our GP has been very helpful and caring to us.
I believe it was LFL who suggested keeping a log ourselves; when I found there were no records of problems, I began keeping my own log.
Had an admission meeting with nurses and social worker (doctor not available); and presented 3 sheets, as brief as possible – his history; our situation right now, and a daily log detailing:
PSW said he was upset and didn’t want to eat breakfast Physiotherapist said he was angry and refused to work with her. He was tearful at lunch In the P.M., we walked the halls downstairs and had a coffee to cheer him up, sometimes he started crying even then and was hard to stop Very tearful all afternoon, and very agitated – keeps saying he needs to be with me. (He’s afraid when I’m not there) Can’t bear any separation Conversation doesn’t make sense – trying to express his feelings, but began singing, then counting – in dialect – 11-12, etc., to 20, then 51, 52, etc. Singing all the while, and crying.
Another day: PSW said he’d had a bad morning and was looking for me He cried and was sad because brother and friends he knew were dead At lunch, he was tearful and agitated, didn’t want to eat He said he couldn`t stand it anymore, his life is finished and no one will help him
Another day: Mood was good. Much calmer than yesterday. Ate all his breakfast. Met with the doctor and talked about my concerns, he ordered test for UTI. Lunch went well. Grandson and SIL came to visit in the afternoon, he was in a good mood. Went to see physiotherapist; Rene walked holding onto parallel bars. Also was able to take a few steps with walker. He was encouraged but a little tired. Will try to do this most days. Went to drum therapy in auditorium. Went well, he was active drumming but afterwards was very tired He started to be a little emotional at suppertime, possibly due to fatigue. Bathtime didn't go well, PSW said he was upset and scared, spoke no English – just his dialect PSW said he did not display this type of fear and anxiety when he was first admitted. I said that earlier, he was occasionally upset, especially when I was away. However, the last week the changes were dramatic and he was very unhappy. He improved when Grandson returned to say goodnight and seemed to go to sleep in a better mood. Hopefully, he was simply mentally and physically over-tired.
Sorry if I am being too wordy, but thought the idea of the log it might help others. I have gotten so much help, myself, from this site.
Have kept up these notes, and hopefully I can present them at the new LTC, and ask for a bit more help with meds until he is peaceful (without being groggy).
I know many think I am spending entirely too much time with him now, but I cannot leave him alone when he is feeling so low. When things improve I will back off and begin to take better care of me.
marg75, you are doing what needs to be done on his behalf and you're doing a great job. Yes, I was the one who suggested keeping your own log and as you can see, it's quite helpful, particularly if the staff isn't keeping good/accurate records. Make sure you have the date on it when you hand it to LTC staff. If you move him to another LTC you might want to summarize your observations rather than give them the very detailed log...his experience in the new LTC will probably be a bit different and you don't want them to decide he is too difficult to care for.
For example: Morning routine - sometimes refuses breakfast and can become sad and tearful. Cooperative with personal care. (You can give verbal examples to support your observations)
Afternoons - experiences some separation anxiety (give examples), can experience sadness (tears) and becomes fearful.
I find keeping my own notes/logs and documenting experiences has been very helpful when managing the care for my husband. It also makes it very difficult for staff to say they "didn't know" or "it wasn't discussed". Of course summarizing the meetings in a document and providing it to staff is also quite helpful...it allows you to document what was committed to and agreed upon so no one in the future can claim it was "never discussed".
You mentioned: "had a coffee to cheer him up, sometimes he started crying even then and was hard to stop Very tearful all afternoon, and very agitated..." and, "some episodes where he is so anxious,"
Could a pm coffee be contributing to his agitation and anxiety? I know it does that to me....
My husband was also taken off Aricept once in ALF placement- and Ativan was his go to for all the years of his illness.
You mentioned a glass of wine to relax, is wine prohibited in the ALF where your husband is placed? If that glass of wine is something he is accustomed to it might signal relaxation not only in his body, but as a psychological prompt.
LFL – thanks again for suggesting the logs, and I really appreciate your advice for when we move to the new LTC. I understand completely what you are saying, and it makes great sense. At the meeting I mentioned, I asked (putting this in writing) for a lipped plate, soup served in a cup so he could drink it himself, and a round foam holder for his spoon, as he sometimes cannot find the handle. This is now being taken care of; if they serve the food without these utensils I ask politely if they could change it. Now it is becoming more of a habit. I sincerely appreciate your input.
Abby, he doesn’t always have the coffee, but you’ve made a good point, and I will take better notice. In my heart I believe it is the separation anxiety that troubles him most. I think the toileting and bathing are especially stressful for him, depending on who does it. Quick movements make him feel vulnerable and scared.
He really is not a problem to staff, as they put him in his room and turn on the TV or his music. He’s just sad until I get there. (I am more of a problem, because I ask questions about his mood, eating, etc.) Not always happy with the attitude of some staff, but mostly they are good and hardworking. He has never smoked or drank (at this point wine is my specialty (smile). I believe that if he can get the right medication to ease him into the new LTC we will make it. Have until now only used the Ativan twice when things were really difficult, but it’s good to know it is there when needed. Hopefully the new LTC will keep this for bad times. Thanks, Abby, for your input.
Marg75, regarding your comment about how some people think you are "spending entirely too much time with him", my advice would be to forget other peoples' opinions and follow your gut. If you think he needs you there, be there for him. Transitions to ALF living is traumatic for most if not all residents and your DH has not had an easy time of it. If your presence helps him calm down and feel safe then (IMHO) it's the right thing to do.
Marg,, my heart goes out to you ((hugs)) My Lynn had a horrible transition, like your husband he wasn't especially difficult he was just missing me. And I know how deeply that breaks your heart to see him so sad.
As Fiona said, please don't trouble yourself with what others think. They know nothing about what is best for you and your spouse. Even those who are traveling the same road with their own spouse really have no idea. We are all unique and have different types of relationships, we just each need to do what we feel is best for us and our loved one.
I personally stayed an average of 10-12 hours the first week he was there. It WAS too much for me, but it was also too much for Lynn to be there alone. I could not have lived with myself knowing he was in such distress and I just abandoned him. He was simply doing what we both did our entire marriage, he was looking to me to comfort him when he was upset. I just had to be there.
It took Lynn several months to transition fully, each week was better than the last. But that first month was a real heart breaker. Just gut wrenching. I feel so badly for you ((another hug))
I have no experience with ALF's, Lynn had to be placed in a skilled nursing home. But, I did fire his first doctor. Is that not an option for you? If that bonehead can't even bother to talk with you, you have a legitimate claim and he should be fired for neglect of his patient.
I have been an advocate for Lynn for 5 years now, I have learned to become a fierce protector and I take no crap from anyone, especially doctors who don't give a damn about my husband. I was timid at first though, not wanting to cause waves... but, I quickly reached a point where I just could not stand to see Lynn upset and something in me just snapped and I flipped the hell out. It's funny now, but at the time I thought the cops might be called on me.
If you already plan to move your husband and it will happen quickly, then you need to decide how aggressive you want to be about insisting you are able to talk with the doctor and demand better medication management to ease his symptoms. It just isn't fair to make him suffer needlessly and I know it must weight so heavy on your already broken heart.
Another thing I wonder is if you like your primary doctor, why can't he/she be allowed to see your husband? I was able to have Lynn's neurologist who is not associated with the facility come to evaluate the situation with my written permission. I know other resident have their own doctor come see them, (if the are associated to the facility) and there are other patients who still see their primary doctor by going to their office. I am wondering if any of these would be a viable option for you until you can move him to the other facility.
Oh I have been so awful not posting here lately, but when I saw Nikki I just had to drop in. So nice to see you spreading the love around we miss you so dear Nikki. And how it warms my heart to know your Lynn is still doing well and making you happy.
It has been 5 months now since Dado has been in the Veteran's home, and lived in the Adult Foster Home 9 months before. So...well over a year since placement. When I got back after a 6 day absence to Washington DC, I noticed he had declined. His far away look is way way far away now. The one way I know he knows me, is the rare times when he opens his eyes, I give him a little kiss on the lips and he responds. Also, briefly, he will hold on to my hand tightly. Thank God he can still eat, though the nurse told me he is losing his ability to lift the spoon to his mouth. They put the food on it, and then he lifts it. But they said lately he makes signals for them to lift it for him. I bring him fresh papaya and apple bananas and frozen yogurt. God I love him.
It is more than obvious that him being in the nursing home is only an advantage, there is NO WAY I could do all that at home, even with help. We may be very lucky, though nothing is 100%, the CNA's, and the nurses, really seem to love him.
My heart goes out to you all. Two cents, the comments about if you have a close relationship, or marriage, makes a difference. Well, maybe mainly in the breaking heart department. However, those of you that may not have been close that way, still hurt hurt hurt I know, with many of your own issues.
I will be writing a blog soon on the DC experience, I think Joan will let everyone know when it is ready. Thanks for all Joan, we love you!
It is now 6 months and wife has been hating it. But a new dining manager started on Monday and she is responding well to the improvements she is making (my wife is a vegetarian so her big beefs (pun not intended) are variety and protein).
My therapist says it takes a year to accept the change and it is common to be unhappy at 6 months.
Nikki, you understand what I am feeling! We have had a close friendship and relationship built on love and trust. His biggest fear is that something will happen and I won’t be there for him (after all these years with no such problems – but I know it is the disease). He wants me to reassure him that we will be together again, not he in one place and I in another. His mantra is “together, together, we have to be together” “when are we going to be together forever?” You are Lynn’s ‘safe place’, as I am my husband’s. He knows he is vulnerable, and he can’t defend himself, so he is depending on me. About the doctor, I cannot do anything now, because he is hired by the facility, and if you don’t like it, you don’t have to stay. But I will follow LFLs advice, and prepare some notes along the lines she suggested, but urgently request, at the first admission meeting, that the doctor review what’s been happening, and a meds review. His own doctor (who has no more authority once a patient enters a facility) has said he would try to work with a doctor to help us. So, I am hoping … I have been my husband’s advocate for about 7 years now; like you, I was afraid to push for help, but over time I became more persistent when it was necessary and I knew he couldn’t do it; keeping good records and all medical reports helped. Overall, until now, we have had great care and care providers. Just have to work at this one. Thank you Nikki. Your input is very much appreciated. Fiona – thank you for your comments. They are reassuring.
Clare is now in her 8th month in her ALF dementia unit. Has she declined? Yes. But would she have declined just as much had she still been at home with me? No one can say for sure, but my guess would be yes because she had been steadily declining prior to placement and that's the nature of this beast we call Alzheimer's. There is absolutely no doubt in my mind, though, that her placement was the correct decision. She enjoys a daily schedule of music, art, games, movies, etc. She gets more exercise in a day now than she got in a week when at home. And she is happy ... except during 'dead times' between activities when she becomes very anxious, missing me and wondering when I'll be there ... even though I am there every single day from 3-7 p.m. Her appetitie has gone. Even though I now meet with the dining director weekly to select all of her meals for the following week, she often doesn't touch her lunch or supper plate ...despite the meals being ones she used to enjoy. I order grilled cheese sandwiches for her a lot now because she still enjoys eating that. And I take her out to a Chinese buffet once a week because I can usually get her to eat well there. Clare has lost 25 pounds since admission and is now taking Ensure twice each day. But weight loss is often quite common for those who are far along with this disease, and Clare had already lost 15 pounds in the 8 months prior to admission. Clare started sundowning a lot more about a month ago ... about half an hour before I leave her each evening, she starts a groundhog day rendition of "I don't know what to do; I don't know where to go." And she no longer recognizes our children or grandchildren. However, she is happy most of the time and in a safe and secure environment with very caring people all of the time. So ... overall I'm very happy with Clare being where she is.
Marg, you are most welcome. I am wondering if what I did with Lynn might be of some help in your situation. Like your dear husband, Lynn wanted me with him always..... when I wasn't there he spent his time looking for me. Talk about breaking your heart! To bring him comfort I told him that I also lived there, but I had to sleep upstairs with the ladies. He had previously at our home told me I could not sleep in our bedroom because his mom said girls were not allowed in there.. *sigh* So that worked for us.
The staff was just wonderful about keeping these fiblets going. When he was looking for me they would tell him I was just upstairs doing one of any number of things we confabulated together. It worked wonders to soothe him. I know we don't have the same set of circumstances, but could you come up with a reason he would accept that you are living there too?
I hope he transitions smoothly into his new facility and that he reaches that place of peace and comfort where he doesn't know he isn't home. Lynn not only believes he is home but that he built the entire facility! Bless his heart :)
Coco, it is so good to hear from you! I wish so much that Lynn and Dado could reside together and that we could help each other through it all...... I look forward to reading your blog! ((Hugs))
Nikki, The idea of ladies’ quarters sounds good, but I have to think about this. Since today was our last day at the facility, I had some packing to do. He was afraid and worrying, but I told him that I really needed him tomorrow when we move … explained how our SIL and GS (love them!) would be moving the bits of furniture and pictures, but that I really needed his help, and he and I, TOGETHER, would see the new facility and take a tour. He began relaxing, saying he’d do anything as long as we worked together. Tomorrow it may be having him carry the list of things to be done, just so he feels he’s contributing. When I left he was calm. Have things to prepare tonight, and hope that tomorrow goes well. Thank you - Lynn is a very lucky man. You are feisty! I'd definitely want to have you on our team!
I am thinking of you and your dear husband today and hoping the transition to his new facility goes smoothly. I also hope he will be able to receive much better medication management there. I just have to say Marg, it warms my heart to no end to see how much you love your husband and try to make his little world a better place. Bless your heart for trying to make him still feel important and needed ((hugs))
Nikki and LFL – The day began very well. He was very calm through the goodbyes (have made friends with quite a few patients – wonderful, vulnerable people of all kinds). Calm also through the transport via wheelchair cab. SIL and GS very quickly set everything up, making the place look homey and welcoming. DH was a great Papa – we spent a lot of time caring of GS because of illness, etc. He taught him to swim, ride a bike, wash the car, play ball, play with his cars, etc., and saw him through some difficult times. GS has become a sensitive, caring young man, and seeing DH in this state has brought out the best in him. I am so proud of him. While setting up the room, DH lost it, and began really sobbing. GS asked him to help with this and that, trying to distract him, and making him feel he had a hand in where pictures were placed, furniture moved, etc., and telling him we all loved him, and what a nice place this was. DH became calmer, and we all had lunch together.
I had taken a photo of GS (age 3) and Papa. I was walking behind them, they were entering a beautiful greenspace in the Park – Papa holding GS’s hand. He looks so strong, and the bond looked so close that I could not resist taking that photo. Enlarged it, and put it on canvas. Then took a photo 15 years later (GS is 6’ and is standing beside Papa, in his wheelchair – they are holding hands). These photos are hung on each side of the window, and staff have commented that they are touched by the photos.
The LTC is nice – clean and well looked after. So far, staff have been wonderful. Physiotherapist tested him today, and said his upper body strength is very good, but the legs are weak; he will begin a program 3x a week – bike and standing/sitting to try to strengthen upper legs so he can go with the walker (and get away from the SaraLift – hopefully – life would, I think, be 50% easier if he did not need that).
LFL, last night I spent some time summarizing, as you suggested, mentioning my hope that the doctor would review his meds. Presented that (one page), his history (1/2 page), and how things stand right now (about ½ page). I presented it to the head nurse interviewing us, who said it would be very helpful; also to the admitting nurse, who said she would pass it on to the social worker, so they would be aware of his background and how best to help him. I felt like that was the right approach – they understand, and it is in writing. Thank you so much!!
DH was sad and depressed before bedtime, stating that the old LTC was better, but I feel that the change is responsible for this feeling. Am hopeful about this LTC.
Nikki, how did you convince Lynn that he owned the world (smile) … am open to all suggestions … sincerely.
Take care, and hugs to you both for your support and your caring.
Marg, what a wonderful young man your grandson is...I could just visualize the pictures; it brought tears to my eyes.
I am glad the documentation was helpful for you and the LTC. When we were in crisis and having to deal with 2 psych hospitals and a LTC facility (and BTW, no one would listen to me) I learned very quickly that in order to get the care and attention he needed (and not what THEY wanted to do), it needed to be in writing and dated. It certainly made it difficult for the various doctors and staff to deny they ever knew. I am just grateful that something good came out of those dark days which is helpful to you and hopefully others, so no thanks needed.
Sending positive thoughts your way that your husband will acclimate soon to the new place.