I thought Dad would live for years with dementia and that our caregiving journey was just beginning. But suddenly, just 10 months after being diagnosed, my dad lies comatose on a hospital bed in my dining room, seemingly near death.
Three weeks ago, he took his walker outside to inspect his tomato plants, do a little weeding, and water the sunflowers. Ten days ago, he lost the use of his legs. A few hours ago, his agitation finally calmed, and he became unresponsive. How did this happen so quickly?
Like most people his age, Dad suffers from more than just dementia. His main health problem is congestive heart failure. However, because Dad's dementia is vascular in nature, it's certain he's been suffering numerous small, silent strokes recently. Could these strokes be the cause of his rapid decline?
My sister's days off fall mid-week, and on this Wednesday she's flown in to see Dad. My brother is making a 14-hour drive on Friday to visit.
I'm happy my sister is here. Merely having another supportive presence in the house provides a sense of peace that I'm sure Dad feels as well as I do. She strokes Dad's forehead the way one would calm an infant and whispers loving sentiments in his ear. She's delighted when, after having lain unresponsive for many hours, Dad turns towards her, cracks one eye slightly open, and puckers up for a kiss. We both laugh, and then cry, as she kisses him – possibly for the last time.
At midnight Wednesday, Dad becomes restless. My sister and I attend to his needs, giving him pain medicine and turning him slightly onto his left side, the side he's always preferred to sleep on. He immediately sighs with relief and drifts off.
Thursday morning, I go to work as usual. Our surgery schedule is light, so I come home around 11:00 a.m. to see Dad and visit with my sister.
"I'll treat you to lunch if you'd like to get out of the house for awhile," she says.
"I realize every minute you spend with Dad might be the last minute," I reply, "and I don't want to deprive you of any of those."
She reassures me that she'd like to get away for a bit. Just an hour, maybe. She's been sitting with Dad all morning and could use a break.
We kiss Dad and tell him we'll be back. I ask the caregiver to call if there's any change in his condition.
At 12:20 p.m. on Thursday, just after we've finished our sandwiches, my cell phone rings. It's the manager of the caregiving service. "I'm so sorry to tell you," she begins.
Dad passed away very peacefully on July 15th. I think he waited for my sister and me to leave so we wouldn't have to witness that last, labored breath. I'm grateful he spared us that.
Tears flowed as we raced back to the house. I'll miss my dad so much. His pain has ended; ours is only beginning.
Dear Elizabeth - I am so sorry for your loss of your father. My mother passed away 6 days ago - she was in the mid stages of Alzheimers but ovarian cancer (diagnosed November 2009) claimed her in the end. I know people are saying it's a blessing, but we still really miss her. Thinking about you and praying for you at this time.
Dear Elizabeth, My prayers are with you and your family. I am so sorry to hear about your father. I looked forward to reading your story each week. Your stories helped me to look at my mother-in-law with fresh eyes, instead of my tired and frustrated ones. Your story was a tale of two journeys-his and yours. Two weeks ago, my-mother-in-law took a turn for the worse, she was given around 72 hours to live and refused all treatment, so she entered hospice. She is now home, but her mental state is deteriorating daily. You have helped me through this. I had no idea what to do about hospice care, what questions to ask. Through your journey with your father you gave me the knowledge and the strength to deal with everything that has happened so far. Thank you. My heart and prayers are with you. Sue
Dear Elizabeth- First I would like to say I am so sorry to hear of your fathers passing. And second I would like to thank you so much for taking the time to write in this blog. I anticipate reading the new blog each week. I appreciate your honesty!! The information I read is priceless. My family and I are taking care of our mother. It helps to know we are not alone but it saddens me to see how many people are effected by this horrible disease. Hugs and prayers to you and your family.
Oh, Elizabeth, Lee and family!! I am so saddened to read of your father's passing. Your journal began shortly after I lost my mother-in-law, in a very similar way. Alzheimer's, some minor strokes, a hard fall and then she was gone. Reading your journal from its conception on, I felt so much like I was reliving all of my days with her again. I worried, cried, laughed and even prayed (in spirit, at least) with you during your weeks with him. Your journey through this and your eloquent writing taught us all so much. I am so sorry for what you are going through with this right now. Please know that all of your caring.com friends here are all praying for you and hoping that God gives you the strength to get through this sad time in your life. Please let us know how you are doing, when you can. Thank you so much for being our voice for so long and sharing all that you did. You have made such a difference in so many lives. With love and respect, Ruth
30 weeks... Not time enough to grow a new life... But time enough for an end-of-season harvest of the journey of one man's soul. A different kind of "blessed event..." As MY family approaches the end of Week 292, I remain, Always, Galowa ©suzannemcable.08.10.2010 An "event" - a difficult but blessed "event."
Thanks so much to everyone for the kind words, thoughts, prayers, and support. Lee and I, and my whole family, appreciate your kind condolences. As we struggle to sort out our emotions and move forward with life, we still want to share our journey with you, our valued friends. I'll be continuing to update you on developments (and, believe me, they are many!). Thanks for sharing our journey with us, and our thoughts and prayers to those of you who are in the middle of your own caregiving journeys.
Dear Elizabeth. Your posts have helped me in dealing with having to put my dad in a nursing home and the realization that my mom is in the early stages. I am so sorry about your father. I think the hardest part for me was realizing that I will lose my parents not once but twice. Once to the dementia and then the physical passing. My prayers are with you and your family.
Thank you so very much for sharing you and your dad's journey through his disease with all of us. I for one really appreciate reading your thoughts as you went through all of it. Take care and hugs and prayers for you and your family, Elizabeth.
A Spirit of Oneness We're thinking of you deeply as we recognise your pain As no doubt you'll miss your father 'til you meet with him again. But every time you think of him he'll be there by your side, So a few more words I'd like to share (if you will please abide). As our spirits are connected (and they dwell within our hearts) We know you feel his presence (although that is just the start). You do not need to look for them, but there are always signs ~ A bird, a word, a song you hear...they will not be disguised. The little thought that strikes you as your spirit lends a hand ~ Trust your warm reaction (and don't try to understand). "That reminds me of my loved one, and it brings me comfort too." Please know it is a message as he reaches out to you. It happens all around us, and, 'the more we seek, we find', To sense him when you will it, use your heart and not your mind. You may feel a coolness touch your arm when no draught is about... Or a bird may tap your window (if you missed it, or had doubt). A dragonfly may land on you ('rebirth' they represent), Butterflies (or Swans) ~ the 'transformation' message sent... A word may keep repeating, or a number plate, or such, Just remember that your dad is simply trying to get in touch. You may even feel a gentle touch as you lie in your bed And his fingers brush your forehead or your hair as he is led To offer you his love and thanks for all you did and had Between you through your Earthly life, though parting, yes, is sad. But signs need do unusual things (the message to be sound)... It's not the bird's first morning song in which the meaning's found. Such signs though are not miracles...just something not the norm ~ (And if you miss the first one, it may take another form!) Note what you are thinking if a bird it takes your eye ~ There's a book that gives the meaning and the message is divine... It's called "Birds ~ Divine Messengers" and I'm certain it will teach That what I speak of is the truth (then your heart 'birds' can reach). Trust Universal Oneness ~ many cosmic Laws exist And they're throughout all dimensions (pay no heed and they'll be missed). Say, the 'Law of Attraction' (e.g. 'reaping what we sow' You'll see Buddhists call it Karma...but that's just a name, you know!) The fact is many people since the start of man's creation Have seen the Laws in action (and that's right through every nation); Though they think theirs is the only way, it really doesn't count ~ The Laws they simply cannot fail...like the 'gravity' of doubt! It's a choice we each are offered (though there is no wrong or right), But choose an open mind and heart, and you will see the light. The more we stay in spirit, then the more we see and hear, And you will feel his presence plus his message will be clear. You can draw on soulful guidance if you learn to read the signs ~ The spirit lives in all of us, it's that which really binds... 'Step out in faith' (the Bible says), 'and signs they always follow' ~ Providing all the help we need to see our heart's not hollow. Whether cosmic help is needed for something small or something big You can always ask, believing, and the answer it will give... But the bottom line is trust yourself ~ your thought will help you see That the answer has been given if you choose to let it be. Thus everything's connected, be they numbers, minds, or hearts, And as energy can't be destroyed e'en physics plays a part! These Laws are universal ~ in the world or outer space ~ From 'reaping what we sow' to simply 'stepping out in faith'. It's important that you do not fear, as karma still applies To negative emotions (in which Fear's the bottom line). As Love it is the strongest good, keep all your thoughts in that And you will reap the benefits, by getting good vibes back. Numbers, they are easy as you need not second guess ~ For example with the number 3, you get a cosmic 'yes'. You may find the clock is often found on 3:33:33... It will only happen often if at first you did not 'see'! But 4 will give the guidance that it's not a helpful thought So if 4's appear when thinking, heed the warning that you sought. 'Fives' may hound you when you're dialling, or while driving in your car ~ If you see such numbers more than once, the message isn't far. But each number has a meaning, for the message to be known, (Though your instant thought about it can be trusted on its own). As your spirit, it connects, with that of universal aid, Your memories of him will never, ever, ever fade. The Kookaburra's Family is 'relationships', and so, If one especially takes your eye then this you need to know ~ He clearly may be seeking a relationship with you That transcends Earthly dimensions, so, we hope that he breaks through. If the 'Heron' speaks (of 'solitude') ~ take time to be alone So you can sense his presence (also hear his gentle tone); The Duck, it asks that you have 'faith' in what you're contemplating; Eagles remind us of our 'strength'...while 'wisdom's' what an Owl's relating! When you're thinking of your loved one be alert to what's around, As that's when signs will most appear ~ in fact, they will abound. In the meantime you are in our hearts, and we hope it's not long Before you find some comfort in the love you held so strong. Just one more thing we'd like to share, and this, too, sounds far fetched ~ But experience has hereby also understanding etched... That when you see a downy feather laying in your way Be quite assured that you have had an Angel near today! May he travel on fair winds now as he's set his wings to fly To leave his body's prison and to visit by and by. And we trust you don't consider that in speaking from our hearts We are creating an intrusion as our own faith we impart. With Love
Dear Elizabeth and Family: Thanks for sharing your story of your journey with your dad. I went through pretty much the same thing with my mom, who passed away peacefully at home as soon as I left for work at the hands of her caregiver. It really made me feel that we had so much in common, and that I was not alone. Bless your heart for all you have done with your husband to maintain your dad and his needs. Maybe ony day we can write to each other about our journeys together. Bes of luck to all of you and again, my condolences.
Dear Elizabeth, I am very sorry to hear about your Dad. Even though things were really "rough", it is stiil hard to let go. You posed many excellent questions and brought out situations that have helped others, families and paid caregivers, to a better understanding of each other and of the person suffering with dementia. I hope that your story reaches foks who can make some needed changes to the "system", especially with Hospice. Hospice services in my area are expanding and have become an integral (and positive)part of the community continuum of care. It is unfortunate that you had such a negative experience with them. Hopefully your story will help them to greatly improve for the next families they will serve. Thanks for sharing your experiences with all of us. God bless you and yours.
Thank you for writing about your "journey". I know your story touched my and many other hearts. I'm sorry to hear about your father. Bless you.
Elizabeth. I am also so sorry to read this, and know exactly how you feel. as we just went through the same thing on July 27th.He was 83. He also had suffered from vascular dementia for about 2 years, maybe more, and we dreaded his further decline. It is such DIFFERENT grieving process than that of my step-mom (his wife) who died a year and a half ago of brain cancer at 62. It is as if we had already grieved the loss of Dad, because he had become such a different person. Angry at his wife's death, aggressive, sometimes combative, and ugly to his family. So, I am finally grieving the loss of the old Dad again, and more able now, two weeks after his death, to go back and remember and miss my real dad. Immediately following his passing it was just such a relief. Blessings to you!
thanks you so much for taking the time to fill us in- I pray for your family every day. May you all eventually be at peace......
Dear Elizabeth, I'm so sorry to read of your Dad's passing. However, I am so glad you and your sister were able to be with him. I too have experienced a sister who waited for everyone to get there, to visit with her and say their goodbyes, then choose her own time for passing. Thank you for sharing this journey with us. It is a gift of gigantic proportions that will continue to ripple and provide help and love for many years. Much love and peace to you all.
I am so sorry ... Know that you are not alone in your sorrow. It happened to my father in a similar way as it did to yours. Congestive heart failure, possible mini-strokes, et al. seem to mirror my dad. We saw him rapidly decline in the few days prior to his passing. He drew his last breath while I was on the phone with the doctor -- my son held him. You are right that our respective and loving fathers are no longer suffering; but you and I are... my dad passed Jan 1, 2005. It still hurts --- but, I am not alone. Thank you for sharing your story...
I am so sorry about your dad. I can relate to your story also. My dad passed away on July 15th 2010 also. I was there when he took his last breath with my brother(from out of state) and my daughter. I had promised my dad I would be there when he died and I am glad I was. That was very hard but I know now he is in a better place and has no pain. Dementia is a terrible disease and hopefully one day there will be a cure. Love to you and your family.
Elizabeth, I'm so sorry. Thank you for sharing your last hours with your dad with us. Prayers being said for you and your family.
I'm so sorry.
My heart goes out to all of you. I lost my daddy in March of this year to glioblastoma (braincancer) We fought an 11 month battle til the very end. You reminded me so much of myself and therefore have helped me some durring my greiving. You are a strong woman and will see your way in your own time in your own way. Take one day at a time. Thank you and god bless you for your story. If ever you need someone to listen feel free to send me a note.
Dear Elizabeth, Lee and families, I am so touched that you thought to include us in what has to be one of the toughest things you have dealt with thoughout this whole ordeal - your dad' s homegoing. I came in about midways of your blog but went back to the beginning and caught up. I, too, am a daughter of a dementia patient - my mom - but I live next door to my parents. Your honesty in your feelings have helped me tremendously and I thank you from the bottom of my heart. I will keep you and Lee and your extended families in my prayers. Take time for yourself now to heal. As someone else said, we do not really know you but we feel we do because of these blogs so I just wanted to tell you that we love you as a fellow traveler on this journey. You have reached the end of this trip and are now starting the next leg of the journey. Take care and keep us posted on how you are doing from time to time. This, too, would help those of us who are facing the same issues.
Dear Elizabeth and Family, Bless you as you go through this difficult time. Your father has been blessed with peace, now you must mourn and with time heal. You did wonderfully caring for your father, and by sharing the journey you helped all of us also. Thank you. Please care for yourself and family now and remember the good moments you had with your father during his life and that he loved you. Jo
Dear Elizabeth, I took a deep breath when I read the title of your post today. Just last night, before I went to sleep, I was wondering how you and your father were doing. Now I know how he is; please care for yourself, and remember you cared for him to the last. He knew. All of us who are taking this journey with a parent with dementia have learned many things from you and your searingly honest posts; it's the honesty that drew me in. May God, however you perceive Him, be with you and give you grace and strength. May your loving family all support each other through this beginning of grieving and readjustment to a life without your father physically present, though I do believe he will watch over you from where he is now, as you watched over him. May you and your wonderful husband Lee comfort each other, and may the love and care you shared with your father be shared with each other so you can continue the journey you began when you married. Do you remember the song, "Desiderata"? At one point it says, "Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fear and loneliness. Beyond a wholesome discipline, be gentle with yourself." I will keep you and all your loved ones in my thoughts and prayers. Take care.
Dear Elizabeth, I am sorry to hear about the loss of your dad. I know what you have been through; my father is gone now 19 years August 19th and there's not a day that I don't think of him and mom. I am also dealing with my mom's 94 year old sister and Alzheimer's. Keep me in your prayers and I will do the same
Blessing to you and your family. You'll never forget him ... ever. I was watching TV today and a character said something he always said. The thoughts came running back like always.
Dear Elizabeth, So sorry to hear of your Dad's passing, but glad he regained peace before the end. Having to fight to provide help makes this all harder. Your's and your Dad's journey have helped me as I try to help my Dad, especially the beautiful and heart rendering story of planting. When my Dad has a reduction in cognition or mood (?) I think "first you dig a hole..." and then look for a way to guide him through the new problem. You are blessed to have Lee with you as I am with Charles. Prayers for strength and peace for you, Lee, your siblings, and your mother.
Elizabeth, I'm so sorry for your loss. Please know that my thoughts are with you during this difficult time. I share in your pain, but I am glad that his last months were with you. It was a blessing for both of you to have that time. When my mother passed suddenly from cancer on the mainland, the local hospice was here to give me free grief counseling which I found very helpful. Know that you will get through this. Lean on others as you need to. And know that you are well thought of and cared for by many of us who read this blog. Take care. Suzanne B
It is so hard to lose your Dad......I lost mine 5 years ago on August 3rd. I am only beginning to accept it! So sorry for your loss.
We don't really know you, do we? But I think most of us feel like we do...at least a little. So your loss is ours in a small way, and we can feel sad for you, as well as relief for your dad's release from misery. Blessings upon you and yours...and if this is the beginning of the end of your blog...we will miss you.
Elizabeth be grateful for a peaceful death. My husband did the same thing. We all were at his bedside. A son had flown in just for the day. He knew him immediately even tho he couldnt speak. We were by his side as he went into a deep sleep. We would also stroke and talk. We finally left to get some sleep and he died peacefully before morning. I believe it was his choice ... the last one he made.
Dear Elizabeth- I wish to express my deepest sympathy for your loss. I shal pray for you and your family. Please give yourself the time to grieve. The death of a loved one brings a totally new journey. May God bless you-
Dear Elizabeth, I just started following your journey,and I left a comment for you once before as the "hospice social worker from the Midwest." I am so sorry to read of your father's death. My heart goes out to you and your family during this difficult time, and again, I am so sorry hospice made things worse instead of better. My heart breaks when I hear these stories.
Elizabeth, accept my condolences on your father's passing. I am an advocate with the NJ Ombudsman's office and also the daughter of a father with congestive heart failure. My mother passed away 2 months ago in almost the same circumstance as your father did. Her vascular dimentia seemed to escalate quickly after running a slow moving course over the years. We are sure there were tiny strokes within the last 2 wks of her life. She was in the hospital for dehydration for only a day and I visited her late evening. She seemed "herself", knew me and kissed me goodnite with "see you tomorrow". Midnight, we got the call that she was gone. I am a true believer in these cases that they do wait for their loved ones to leave, to spare us and to let themselves drift off into "the light". They seem to acquire an inner calm that last day and almost seem to send us that message. A sort of "get ready" for everyone. As I said, my father has had CHF for over 10 years and has a pacemaker for the past 2. But, in the past year, he is declining physically. His brain is still 95% and that makes it very easy for him to realize what is happening. Plus, seeing how quickly my mother passed away, he is now into the "that's what will happen to me" and he now has a new fear. The best we can do is reinforce that he is NOW still living and getting around, even if slower and needing more assistance. (he is in an assisted living facility). In my work as ombudsman in 2 nursing facilities, I see this on a daily basis and remind the family members that we can't decide when they leave us. They each decide for themselves on any given day. If they want to wait for us to leave, we have to give them that last respectful wish. My thoughts and sympathies are with you during this sad time.
Dear Elizabeth. My deepest condolonces to you and your family. Now, as my 85 yrs. young Mother told me many times as I left the house, "You take care of you, now."
Dear Elizabeth You have helped many people to feel less alone by sharing your father's and your family's journey with us. Thank you for the gift you have given us. My deepest sympathy to you and your family.
Dearest Elizabeth, I'm so sorry to hear of the passing of your father. I'm so glad that you and your sister were spared the trauma of watching someone, you so obviously cared deeply for, take their final breath. What I'd like to reassure you is that it is very seldom as dramatic as you might be imagining. In the vast majority of cases that I've witnessed, and I have witnessed many dozens of passing, it's a very peaceful affair. I'm one of those types of people that really gets quite emotionally involved, and I will admit that I've cried on numerous occasions, even though the 'clients' were not related to me. (I used to work for years in a home designed specifically for catering for elderly, mentally infirm clients ... that's people suffering one or more types of dementia.) You asked, near the start of your post, whether those "numerous small, silent strokes" could have been responsible for your father's sudden decline. Sadly, the answer is yes, I'm afraid they could, and probably were. The medical terminology for that type of stroke is called a TIA (transient ischemic attack). They occur due to either a blockage of the blood supply to certain areas of the brain, or small vascular leaks. In each case the symptoms can present themselves the same ... a sudden lessening of physical and mental agility. This occurs because there's a lack of oxygen reaching the area of the brain that's affected. In many people that have one of several types of vascular dementia, between each 'stroke' there does seem to be a little improvement, or sometimes a plateau is reached where no further deterioration occurs. Sadly, from what you say, it seems that your father had a series of 'strokes' happen in a very short space of time. You can't imagine the turmoil that I'm going through right now, even without me even knowing you, your sister, or your father. I am close to tears just thinking about it. Thankfully, and I do hope you don't think me ignorant, I believe you can rest now, safe in the knowledge that your father has no more of this happening. You don't mention whether or not you have any religious affiliations, but often speaking to a preacher, rabbi, imam, etc. could help you to understand things from this perspective. Also counseling, I feel, would serve all of the family well. I appreciate that, coming from a social services background, my opinion may sound biased to you ... and it probably is, but I do feel all of you could do with some sort of support at this very sad time. I will pray for your father, and all of his family. Blessings to you all. Lots of Love and Light. Mick x x x x x x x P.S. Please don't be offended, or alarmed, at the "x's". It's merely a logo, of sorts, that I've used for some 30-odd years now ... from way before Political Correctness came into vogue.
Dear Elizabeth, My very deepest sympathies on the loss of your father. You have touched me and so many others with your blog. As I watch my beloved 92 yr old grandmother enter mid-severe dementia, I am trying to prepare for that call. My best to you and your loved ones.
Elizabeth, You have been an inspiration to a great many of us following your blog and dealing with many of the issues you have dealt with. Thank you so very much for opening up and sharing such a personal journey with the world and helping us all cope a bit more with our own personal journeys down the Alzheimers path. My thoughts and hugs to you and your family.
I'm SO sorry to hear that your dad has passed away. You were an amazing caregiver and devoted daughter and inspired us all. ((HUGS)) from all of us at Caring.
Elizabeth, I am so sorry to hear of your dad's passing. I'm glad that his agitation finally lifted and you and your family got to see him calm again before he passed away. And I'm glad that your brother and sister are with you now along with Lee who has been your rock throughout. Thank you for sharing your dad's and your family's journey with us. You and your family remain in my thoughts and prayers. Cathy
I am so very sorry to hear of your loss. Thank you for sharing this very personal journey with all of us who have followed your writings. Please know I'll keep you in my prayers as you now begin the journey of grieving.
Dearest Elizabeth...my heart goes out to you and your family. This has seemed so sudden to us who have been your faithful readers but I know it has been several lifetimes for you. You and your father have been like a beacon for those of us sharing this journey with family members of our own. Having your sharing each week has been a true gift. Your father's part of the journey is over but you are continuing on with us. I pray you find peace and understanding.
Dear Elizabeth: Thank you for your blogs. I am deeply saddened to learn of your Dad's passing. He is no longer in pain and discomfort and that is good, and you did a wonderful job caring for him. My husband has alzheimer, diagnosed four years ago and I can see his health and mental state declining each month. I hope to be able to care for him to the last, like you did your Dad. You're a wonderful daughter. Thank you for sharing your journey with us.
Dear Elizabeth, I am so sorry to hear about your father. You are so brave for sharing your life with us. I take care of my mother and can relate to your daily routines. Your blog title "Suddently, Dad is dying" brought me to the realization that I will be there soon. Thank you for your blogs and God bless you.
oh, I am so sorry to read this. You and your blog have been so important to us here and you've let us in on such a personal story. Thank you so much for sharing, and blessings on your father and to you, on his passing.
Dear Elizabeth I've been away from reading posts for a few weeks. I am so sorry about your father. The photos, your descriptions, all remind me of my father who is living with me for the past 2 years. I so accutely fear what you have gone through. My father declines in his mental status and has become more anxious, but I dread that cliff we may fall over. Love to you and your family.