I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about my difficulty adjusting to the last part of my journey. Please post comments here. Thank you.
I just finished reading your blog from today, Joan...It brought back so many memories for me; and I remember the same feelings. I believe that, although it was difficult for you to hear Sid in a lucid moment admitting that he was aware of what you were both facing in this final part of your journey together, some day you will find comfort in knowing that he was aware of the fact that you were there, caring for him as best you could; and that you loved him. I'm glad to hear the Hospice grief counselor was so helpful to you in encouraging you to take care of yourself; and in guiding you to a quiet acceptance of the final part of the journey. Prayers, thoughts and hugs.... Love, Kathy
I don't remember when it was, but in the last few weeks when DH was still up and walking. He caught me in the hall. Wrapped his arms around me and gave me the biggest, strongest hug. He held me so tight. I felt in that hug he was telling me he loved me and knew what we had been through and what was to come. But most of all I felt loved. He remembered me for just a moment. I am sorry Joan, please know that you will get through this. Just hold on to the moments, they will give you comfort.
Joan, we're not there yet, but we're not too far behind. This is hard enough, I have no idea what I'll do and how I'll feel when we get to the stage you and Sid are. We had a glimpse last week with a choking incident and a possible tia. He went from being alert and able to walk to being "out of it" and unable to walk, transfer or do anything independently. Although I was not emotionally ready, I prayed that he should be taken that night. It seemed easier than witnessing the inevitable.
You have been a wonderful, loving partner and caregiver. I agree with bella, one day you will find comfort that Sid knew you were caring for him as best you could and how much you love him. I have no words that will help you get through this excruciating pain but know that I and all the members of your wonderful site are here for you.
I am glad the Hospice social worker was able to help you.
Hi Joan, fantastic blog. I placed my husband about the time you did and he is not yet on hospice but I have found that visiting twice a week is all I can muster. Any more than that depresses me so I don't go more. I look at living one day at a time as the only way. I liken it to AA where they stay sober one day at a time. Although we are not dealing with alcohol it feels the same. All we have is the present moment and so living in the past or future is not where God is. I know that God only gives us strength for today. Yes they are going to pass on and we will be fine because at the time of death we will have been given the grace to get through it. Every time I visit my husband I see the blank look in his eyes and notice he is getting further and further away. He still know me and tells me he loves me and misses me. I am grateful. God bless and thank you for sharing your journey with all of us.
Joan, your comments hit me hard because I feel so sad and conflicted like you do. I feel like I have to visit him every day (he's in assisted living) so as to make sure he's okay but seeing him brings such sadness because I never know if he's going to have a bad day or a really lousy day. I feel like a little bit of me dies every day. My heart goes out to you Joan.
Joan, DH and I are in pretty much the same place, although he is home with Hospice services in place, and I am pretty much tethered in the house except for a few hours when the aides are here so I can get shopping and errands done. Your blog expressed in an almost uncanny way what I am feeling, too. It's like he and I are both dying--not just him. I'm supposed to be completing a major writing project, but I just can't seem to get it in gear. It's like my mind has turned into mush. Maybe it's the lack of sleep, the sheer physical tiredness, and the constant distraction and worry. I do find that if I get up real early in the morning and sit out on our screened porch with a cup of coffee, and then practice my harp for awhile until he needs me again for something, that that helps some. That is my "respite" , and I think just about all that's keeping me hanging onto my own life right now, as opposed to the rest of my so-called "life" that is focused on him. I am working on a somewhat difficult "challenge" piece, and there is something therapeutic, I think, about gradually having something beautiful develop out of all the misery and chaos. (Incontinence, agitation, yelling, falling, constantly changing meds around, etc., etc.) As much as I would like an Alzheimers-free life again, that will only happen when DH dies…and even as impaired as he is, I can't really stand the thought of his death. As I see him going downhill day by day, it is excruciating to watch him just dying by slow inches in front of my eyes. He was (and is) a very, very special person.
Joan, I did not have my husband on Hospice but had he not had the cardiac arrest, I know he would not have been able to withstand valve replacement surgery. The doctor put in his observation notes on the Friday ( his first nite in the hospital) that if he declined surgery or was found not to be a candidate, my husband would have to consent to hospice care..Except he didn't tell me THAT... only that my husband's valve situation was critical. Had he told me this, it would have been a sock in the solar plexus to be sure. I am not sure how I would have internalized that information it would have been such a shock.
As I have said before, perhaps it would have at least given me 24 hours to start thinking about the when and what to do etc..you know what I mean..
So while my husband was becoming more delicate, he was not mentally as far afield as he was in terms of vascular disease and my emphasis was always more on the ALZ symptoms rather than the vascular because I had a false sense of security thinking we were doing pretty well under the circumstances...I only know I did the best I could for as long as I was allowed to and was at the point of seriously starting placement if things after this hospitalization were such that he needed more medically insightful care than I could provide. I didn't get the chance.
As to that idiot who asked you what you want to do " after" that makes me want to slap someone until their teeth and hair fall out. What an insensitive clod! That happened to me but after I lost my husband...a neighbor came up and said " who was that cute guy you were talking to? are you stepping out? wink wink" I answered, NO I am not "stepping out" it has not even been a year and that cute guy goes to our church and is a landscape contractor I hired last year..we are planning my yard and driveway project" This is the same woman who is a divorcee and tried to liken her situation to mine...I told her then...nope not the same..yours was sad to be sure but it was a mutual decision. My loss was NOT.
I think the advice, while hard to manage when you are so focused on Sid and what is going on and the what will be, to try to somethings for yourself is sage. This whole ordeal is a nightmare, no doubt about it. " Later" will have it's own share of changes. I am glad you are seeing a counselor...that is valuable help. The little things can be something as small as a new bottle of nail varnish or some new bath powder..
I am still not very well adjusted and it has now been a year..the 11th....and in two days a year since the funeral...my house is still a mess, I have not gone through the closet..took 6 months before I could touch his desk. I have found things that make me VERY wistful and others that make me laugh out loud...and I think I even hear him whisper " take your time, I left more surprises for you to find"..( I wish he would tell me what he did with his EAgle Scout sash that I have been looking for since 2010!)
Joan, you have done a yeoman's job with this blog that has helped so many. Some have had a journey long like yours, others shorter but none has been without pain and suffering all around...All of us will be here to share your tasks as you have been for us. You are far stronger than you think.
As you so have done so often, you wrote about a situation I am also wrestling with. This has been an incredibly emotional month for me. I finally got around to reading "Jan's Story" written by Barry Petersen, the CBS news reporter whose wife, Jan, was diagnosed with Alzheimer's at age 55 and has now been in assisted living for several years. I also looked at a clip of him on You Tube explaining why he wrote the book and describing some of the reactions he received when he chose to begin his "new life without Jan" ... while his Jan is still alive. Along with this, I've been final editing a book of verse describing my feelings and emotions dealing with my Clare's Alzheimer's for the past 8 years (3 years prior to and 5 years after diagnosis). Adding to all of these conflicting thoughts scrambling around in my heart and mind was something our son recently said to me, imploring me to start getting out more and getting on with a new life by myself. "I've already lost my mother ... I don't want to lose my father, too." he said. All of us who visit your site have or will have similar struggles ... and there are no right answers. I still visit with Clare at her assisted living facility every day, but I had to cut back on the amount of time of my daily visits. My 4 hour daily visits were taking too much of a toll on me phsyically, mentally, and emotionally. I now only visit for 90 minutes a day. Clare has not noticed any difference, but it has reduced my stress tremndously. Also losing affect like Sid, Clare no longer rushes up to greet me when I arrive, and I must now initiate any kissing or hugging. She's enthusiastically responsive to every hug and kiss ... but she won't initiate. She still says she loves me each day ... but is starting more and more to refer to me as that "nice man" sitting next to her. Joan ... you must do what you must do, and whatever you decide to do is, in my opinion, the right decision. I'm happy to hear that the baby steps you've just started taking seem to be promising. I'm also taking my own baby steps in my own way. We all know that there is no easy way to get through any stage of this disease, especially those final years. What you and I and all of us Alzheimer's spouses must do, though, is accept the reality that when this horrible disease finally takes our spouses from us, we still need to go on living. But some of us may need to start that next phase of our lives even while our Alzheimer's spouses are still alive. You have started to do that. So have I. Each of us must do what we must do. There are no right answers, and whatever we decide to do will always be a series of difficult emotion-laden decisions. But, as with so many other aspects of our lives, it is what it is.
Thank you sincerely acvann for the note about Jan's story. I found the utube clip and have ordered the book.
He noted writing about the condemnation he received throughout Jan's illness. That is why I ordered the book.
Even though my husband has been in a facility now for 2.5 years, daily I hear comments in my head from friends who now do not even speak to me. They did not think there was anything wrong with my husband and condemned me with actions I needed to take to keep us both safe. I am haunted by that.
I know several others on this site have also been on the receiving end of harsh judgements and I am so grateful to those of you who have shared, and continue to share about the anguish those caused. Again, like so often, it is great to know my experiences are not in isolation.
Just a footnote, Barry Petersen's wife Jan passed away in May 2014. I assume he's continued his relationship with Mary Nell.
CBS has rebroadcast the segment Barry did regarding his wife and his new relationship a few times. It may be available on CBS Sunday Morning website or You Tube. It was very touching.
The Barry Peterson CBS video is in my "Articles of Interest" section on the left side of the home page - www.thealzheimerspouse.com
Update - I have been feeling quite a bit better since I took the Hospice counselor's advice not to obsess over how I will react and how I will feel when Sid passes away. It seems like a simple thing I should have been able to figure out myself, but I really needed her gentle persuasion. I have been focusing on the things I am doing NOW.
I am so glad you are feeling somewhat refreshed, Joan. Your Hospice counselor is right...until it happens, none of us know how we will react... I think back to how I reacted when my mom passed away..it was because of ALZ...then my dad was totally different. He was fragile but otherwise his normal self...bossy a bit...but when I go that phone call I nearly went down in a faint...and when the hospital called. I was calm...prayed " Oh God" over and over and over. So your adviser is right....don't even go there.I hold you in thought and prayer at this time. I know how difficult it is for you.
Hi Joan, I'm glad that worked. Have you ever tried "mindfulness meditation"? It is based on Buddist meditation practices and uses breathing and concentration to help you focus on living in the moment. (It sounds like a micro version of the one-day-at-a-time thinking, doesn't it?) Anyhow, it's quite popular. Although I prefer activites where I have to physically move my body (like Pilates), many people have found mindfulness meditation helpful in reducing anxiety and even alleviating pain. People who are interested can get CDs that will guide them.
Joan, I believe something that helped me "turn the corner" and get past the life intersection where you now find yourself stalled was just gritting my teeth and picking up the phone and calling the funeral home for an appointment to make "final arrangements" for Frances in advance of her death. It turned out to be a fairly painless process, and doubtless less stressful than it would have been had I waited until her actual death. I made arrangements for her cremation and use of their chapel for a memorial service, and prepaid for these so I wouldn't have to deal with this at a worse time. I went ahead and wrote an obituary notice, just lacking the dates, for publication in the local newspaper, and I wrote material for a eulogy to be delivered by a friend. I asked three of her bluegrass buddies if they'd be willing to sing at a memorial service, and suggested three hymns for them to rehearse. I spent days going lovingly through old photos and selecting ones to display at a memorial service -- sort of saying goodbye to the former healthy Frances, I guess. All of these things doubtless helped me accept the reality of her upcoming death -- the only thing left uncertain was the date. It may be that an engineer like me finds it easier (it wasn't easy) to detach from a loved one, but I do believe that going ahead with stuff like this might also be therapeutic for others.
Gourdchipper--I did the same things that you mentioned in advance. Made the arrangements, wrote the eulogy, made a scrapbook with photos and mementos, chose clothing for Steve to wear--in other words, did as much as I could before his death. I felt the same way--it was less stressful to take my time rather than wait until he passed. I'm about as far from an engineer as one can be, I really think for me it was about excersising some control (to the extent I could) over an uncontrollable situation.
I wholeheartedly agree with Gourdchipper and Marilyn's comments. I had thought about doing this, and we discussed this in our support group. Then 3 of my good friends who were in their 50s/early 60s lost their husbands suddenly within a one year span, and they each told me separately they thought I would benefit by doing this. They had all used the same funeral home---so I called and had a very informative meeting with their contact person. It was extremely helpful to take all the information and my notes, bring the packet of info home, review it and then I revisited it a few months later after I moved my husband into a facility. I did not pre-pay but I did set aside the estimated amount in a separate account fund have written out all instructions for the service. There are SO many options that I highly recommend at least having a preliminary meeting---when you are somewhat calm and your head is not spinning. I also plan to have my husband's brain autopsied, so that is also part of the "to do plan" that I have all written out at home AND at the facility.
My problem with making funeral arrangements is that I would be making them for myself, too, and I just refuse to do this. I have lost the last seven years of my life -- my late 50s and early 60s -- to this disease and now I am supposed to plan my funeral? I makes me furious even to think about it. I know this is irrational.
myrtle, I feel the same way. I refer to my 50's as the lost decade (behavior changes, didn't know it was dementia) and now I'm 63 with no end in sight. I don't mind making his arrangements, but NFW will I make mine now. We bought places in the mausoleum for our ashes this year, no boxes or urns yet and I will talk soon to a local funeral home on cremation for him but I will not pre-pay since things may change (like living in a different location).
Since his family and friends abandoned him, private service, no notification to family. I have written his obituary and will put it in the papers long after he's gone.
......I feel that I have to chip in here and tell about my experience with making the final arrangements. I did none of that until the time came when it became necessary. I think maybe I was too busy doing the things that needed to be done right now. I was taking one day at a time and doing what I needed to do that day. .....When I placed Helen in the long term care facility, they asked me which funeral home I preferred and I gave them the name of a well known one. When Helen passed, eight months later, the head nurse asked me if I wanted her to call the funeral home and she did. They picked up her body within an hour. .....When I got home, I got a call from the funeral home and we set up an appointment for my daughter and I to make the cremation arrangements. This worked out very well for us. They kept her body frozen until cremation. .....As for the obituary, I would never have written it before she had passed because only after her passing could I really express my true feelings. ................Anyway.........That's the way it was for me.....GeorgieBoy
George, as always, you bring up a great point regarding the obituary. I have written "the bones" of it but I am sure there will be more true feelings if he passes before me. I wanted to get the basic facts right...the emotions and true feelings will come later.
As an aside, I wrote my mother's, father's and favorite aunt's eulogies and did so only after they had passed. If I had written them before they would have been very, very different. I am very proud I had the unique privilege of honoring them.
checking in here after a long time away. When I bought cremation services for my husband and me, back a few years before he died, they were not with a specific funeral home, they were basically an insurance policy to transfer to wherever I am when I die. You might check that out, those of you who think you might pick up and move.
I visited our preferred Funeral Home a couple of years before my husband's death and one year before my Mom's. Made the same arrangements for them and also myself. Nothing fancy but tasteful. I wanted 2 ferns on either side of the casket and greenery and white calla lilies on the top. One of my daughter's took the ferns home. I also wrote all 3 obits, to be edited later. I like plain and simple obits instead of flowery and a big eulogy. One of my daughter's put together a family booklet about each of their lives including pictures and put them on display at the Funeral Home. Both daughters gave a Eulogy. A granddaughter and grandson played violin, piano and sang and also a niece. Simple and easy. I also chose the clothes and had them ready. It was a great relief to me to have this done and "out of the way". When the time came, I didn't have to go in and make arrangements at the last minute. A lot of people don't want to think about death and dying but for me, it is the cycle of life and will happen to all of us.
I would be interested in what you all think of this idea:
If my husband predeceases me, I think I would need to have calling since all of our children have connections and friends in this town. I, however, do not want to stand and make small talk with a group of people who (for whatever reasons) abandoned my husband when he became ill. He was well-like, kind, generous to a fault, and always doing favors for everyone. Then Alzheimer's hit and poof - the room cleared out.
I would like to be in a quiet side room and great only the people who have been kind and supportive. The children could bring them to me. I suppose it will look stand-offish, but really, I don't care anymore. This abandonment hurts so much. I want to be comforted by the those who cared.
I feel your pain march, and most of us have experienced the same, one way or another. However, I firmly believe holding grudges against people only hurt the one hanging on to it more than the ones who ignored us or hurt us to begin with. I try and just let things like that "just fly over me". That is just me. I know I am guilty of not paying enough attention to friends who are in hurtful situations. We never know what others are going through. My friend has already planned and paid for his final day. He wants no service or visitation, just a graveside service for select friends. I try and talk him out of it, but he is adamant. I think mostly because his son was unable to visit his Mother much during her bout with cancer even though he lived in the same town. He is on good terms with his only son, but knows he has a problem being around terminally ill people.
marche - you could do that , just have a graveside service for a select few. I have heard of the surviving family not sitting out with every one else. Some people don't like others to see them grieve.
The reason neither of us will have a service is there is no friends to come. No way would I want to have to entertain his brother should by some miracle he was to come. He could not come when his brother was alive, so why when he is dead? I definitely do not need his 'sympathy'. Art has said he would like his ashes buried in the soldier section of the town he grew up in and where his parents are buried. But that depends on if I can afford it. Otherwise I will throw them to the wind or bury them in a national cemetery.
I hate funerals where people pretend to care but could not care enough to even phone when they are alive.
marche, What I'm afraid of is that your plan would put additional stress on you at a very difficult time. Also, involving your children into the plan might make them uncomfortable or worse. There is so much stress within a family during a funeral and this might just add another level to it.
I completely understand your desire to avoid those who abandoned you and your husband. Since the calling hour is mostly for your childrens' acquaintances, why not absent yourself entirely from it on the ground you are not up to it? Another possibility would be to reconsider the calling hour entirely. I am told that funeral services now are far simpler than they were in the past, with many families choosing not to have calling hours and just to have a religious service (or secular memorial service) with burial immediately following. I'm sure there are other options, too.
marche, as I've said before, I am not planning on publishing an obituary until a few months after DH dies and only notifying a few people about his death. The memorial service will be private and I have absolutely no intention of notifying anyone in his family.
I have a cousin and one of Rich's cousins did exactly what I'm planning-no notification to friends and family (not even her sister!) and a published obituary the day after the service.
So I think these days anything goes. Do what makes you comfortable. Just remember, there's no do-overs.
There is a security issue related to an obituary. There are crooks who read the obituaries and then rob houses while everyone is at the funeral. My FIL hired someone to stay at the house during his wife's funeral. So publishing the obituary after the funeral has other advantages.
Thank you all for your input. I am only rolling possibilities around in my head and you have all given me some different perspectives, which is what was needed.