It's going to be difficult to summarize this in 500 words or less, so bear with me.
When I returned from my disastrous trip to the family home after Father's Day, I discovered that Dad could barely walk -- and was dismayed that no one was taking him to the doctor to treat his ailments. Let me recap.
Dad fell twice in the two weeks prior to my trip to see Mom. I witnessed the first fall, in his bedroom, and assessed him for fractures. He seemed okay.
The second fall occurred about two days before my trip. Lee, coming to bed at 12:30pm, found Dad lying on his bedroom floor, with the light on, his mattress and box spring strewn about. We have no idea how long Dad was lying there – or how he found the strength to dismantle his bed. Nonetheless, I again assessed Dad for fractures, but he seemed all right. Lee (mainly) got Dad up off the floor and onto his walker. We reassembled his bed and put Dad in it. He was limping around with his walker the next day.
He definitely wasn't all right when I returned from my trip.
Severely hobbled on the right side, Dad could barely walk. I took him to urgent care the next day, and X-rays were negative (thank goodness!). The physician said he suspected Dad had a groin pull and a torn bursa on the right hip. He recommended not bed rest but walking 5 to 6 times per day. We complied.
The following Wednesday, I had to help Dad get to the toilet in the morning. He fell getting up, but I was there to catch him and pivot him onto his walker. Then Dad, the man who could endure anything, admitted to me, "I can't walk anymore. Please wheel me out to my recliner." I did as he asked, but he could no longer bear weight on his good leg, so I couldn't transfer him to his recliner. At that point, as an alternative to nursing home placement, I called a hospice provider to assess him, fearing the worst.
Dad was admitted to hospice that day. The consummate farmer and outdoorsman has been bed-bound ever since.
Within 24 hours of my call to hospice, a hospital bed was delivered, Dad was moved out of his bedroom, a nurse was assigned, and his medications were titrated to maximize comfort. As I write this, he's well-sedated and peaceful in his new bed in what formerly was our dining room.
My dad is dying. Maybe it's the dementia. Maybe it's his congestive heart failure. Maybe it's the many mini-strokes he's had.
Whatever the cause, my dad is dying. How did he go from vital gardener to barely coherent invalid in just two short weeks? And how will I ever survive without him?
I am just now in the beginning stages of my dad having dementia,and he has congestive heart failure. I have been a CNA for 25 yrs. I know what lies ahead but it is differant when its your parents. I moved my parents in with me about a yr ago. My dad was diag. about 4 months ago with dementia, prev. he had a heart attack and has total blockage on one side and has 10% good on his other side. To make matters worse my mom is in denial. She says " theirs nothing wrong with him" she aggs him on, gets him going...its a fight to get her to understand, and to quit. All she does is get him going and then it takes hrs to get dad calmed down. Thank You for sharing your story. Donna
Thank you for putting this in writing!! I am going thru this with my Dad and no sure what to expect next. Now I know about where he is and what to expect. May the Angels be on your shoulder. Thank you again.
I am so sorry to hear about your father. My grand-father is in a home now and has been for about two years. He has Alzheimer's. I just visited him this past weekend and it seems everytime I get to see him he is so much worse than the time before. The only thing that remains the same is that he is always happy to see me and his new great granddaughter. This past weekend was the first time he did not remember who I was. I can' t even imagine what you're going through. Stay stong for him....and just love him. My thoughts and prayers are with you.
UTI infections do cause memory lapses. Also, Mom fell and the ER Dr. did not feel her hip was displaced (as Mom had no pain there at the time, so no x-ray was ordered). I felt like I was the Dr., as I researched medications as to why she was seeing tiny spiders and webs. Fortunately we had a good nursing home, but wished I could have handled her at home. She also had severe rheumatoid arthritis and couldn't feed herself the last months. She had no quality of life and was probably in pain. She passed away two months ago. I held her in my arms and talked to her while she slipped away. My suggestion is to be with your father as much as you can, hold his hand or rub his arm, so he knows you are with him. We don't know what they can hear or feel. When I didn't know what to say or talk about, I would set in Mom's room, reading or watching TV, and she could open her eyes and see me there. It is so tough watching our parents get old and fragile. I know Mom is at peace now, with Dad in heaven, and I am thankful for the time I was with her. If it wasn't for my faith, which Mom raised me with, it would be unbearable during this time. As my pastor said, there are no bad or wrong decisions. God will make the best of the decisions you make. Take the time to just be with your father and let small things unattended for the time being. You will be glad you did. I like the 2 Corinthians 1:3 verse ZellaZM mentioned. Perhaps you could post that on your bathroom mirror or some place that you can read the positive words over and over.
Thought of one more thing we all need to remember, especially in this HOT weather. Dehydration!!! As we age we tend to drink less and less. And the elderly have the additional concern of having to get up to go to the bathroom if they drink. Push fluids!! Especially Juices (Cranberry if UTI's are a concern) and water.Make toileting as easy as possible and maybe get on a every 2 hour schedule with reminders so there won't be a mad rush of urgency. Again, you are wonderful. It should be your mantra...and all of ours. Will be waiting to get the next update.
Here is another "lurker" coming out to offer prayers. As I've read your posts over the weeks, I've been reminded of 2 Corinthian 1:3 that says "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." It seems to me, Elizabeth, that you're living out that verse as you share here. I want you to know that your words have been a great comfort to those of us who are in similar situations. I don't know if that's any comfort to you...but I want to thank you. Keep us posted...
Praise to you in your courage and bravery, Elizabeth and blessings to all of you have responded with such concern and love to those you care for and to one another. I am hearing loud and clear as you speak k of the swiftness of the changes coming as you suddenly find yourself at the end and also the signifigance mentioned about UTI's aas well as urine output and the confusions attendant upon those changes. I am in the midst of the latter right now myself and I also found my Mon in a dreadful condition after I returned from a short trip the weekend of May 24, 2010 and she has been declining swiftly ever since. My aunt and friend who were with her in my absence had no idea what they were facting as she got a sudden and severe UTI while I was gone and she went to emergency for tratement and then came home again. When they picked her up from the hospital they took her to bingo all day. I was just horrified when I learned of this as when I returned home, they still did not realize how sick she was and she was hiding it very well. The minute they left she literally collapsed. For a week she was in an ever weakening condition every day until she couldn't walk and had a bad fall too. She was hospitalized for 10 days and though still home with me now as gone through sever and noticeable changes every day for the past 8 weeks. AFter that first UTI, that night I returned home her room just reeked of urine and the odor was coming from her breath. It continued for a day or so and then lessened but has still been present throughout all this time. Now she is having difficulty peeing again, mostly in the evening and into the nights and though some physical strength has come back, she has lost her long term memory in astonishing ways that even she is still a bit aware of. Now after some days of the pee problem returning and remembering that weekend I am measuring her output...OK in a.m.s, then decreasing during the day until at night she is going about 25 cc's at a time and it is dark amber to brown color though clear in those a.m.s So I am very aware of what we are in now and the concomitant levels of confusion and weakness. I know that something slight will happen and we will have turned that final corner. Meanwhile, the irony in this is my aunt and her friend (both in denial about all this ) are coming to take MOM to bingo for the day Thursday of this week. Mom is of course keen to go but not good to go. She will of course. I will not stop it as it is her choice but I am fully prepared of the risks entailed and that I am likely to see something very different happening in the night after her return. But if this is what takes her around that turn, it would be in a way that she wanted. BINGO!!! What a journey. You are all heroes and heroines. I am vigilant and caretaking the best time and often furious and resentful too when we go for several hours of sorting out confusions especially about money and her suspicious of me but almost thankfully, I am becoming too tired in those rounds to sustain negative feelings. Now too, I think of the amber urine and remember to respond gently as we do not have that much time and it accounts for these behaviours, these failing kidneys. But it is indeed some kind of journey to be on tis journey in this sacred space as one of you called it with a loved one and go through all these up and downs and twists and turns of mixed realities and feelings. It is very surreal most of the time and then it is over, I expect. I agree with the rest of you. Then we will understand and have no regrets and have learned wisdom that can come in no other way.
Thoughts and prayers are being sent your way. My dad is also close to the end. He has been telling my mom for the past year that he doesn't have long to live. After seeing him today at the nursing home, I believe the end is nearer than we all think. Last week he voiced that he didn't know if he wanted to go on. One part of me doesn't want to lose him and another part of me wants it to be over for him and for him to be at peace. Thank you for being able to put a voice to this for all of us.
I have not read any of your previous blogs but wanted to just comment on the urgent care x-rays and assessment of no fractures . Not all fractures are discovered from x-rays. My mom's pelvic fracture was missed on her first ER visit . After two days I insisted she go back to the ER and this time they took an MRI and it was determined she had a pelvic fracture. I thought I would mention this although as you mentioned it could be other issues. I feel your love for your dad. My thoughts are with you.
My heart, my prayers are with you. I, too, was surprised when a very vital farmer who could walk miles in the woods on a daily basis, woofed down whatever I brought for him to eat every night, (especially my cream gravy) carried a punchline with the best of comedians, hid mousetraps in my boots was reduced within weeks to a weakened, frail little man whose voice was thick and slurred, who couldn't swallow his pills and who fell one morning while going to the bathroom and never was able to walk again. The call alerting me of his fall came from my foster mom, who has dementia now, who couldn't really understand what had happened - all she knew was that he was lying in the floor and his head was bleeding. I called a farm hand, called 911, and rushed out of my office - a short 15 minute trip to the country that seemed to last for hours. Within one week's stay in the hospital, my mom and I left the hospital after a wonderful long stay with him on a Friday night - assured everything would be okay even though the doctor suspected a small stroke and couldn't determine for sure since he had a pacemaker and couldn't have an MRI to make an accurate diagnosis. We were to discuss the possibility of a feeding tube the next day because his swallowing muscles weren't working. We, the family and I, agreed this was NOT life support and were all determined to see this through one day at a time. I got a 2:30 am call that Saturday morning - a tearful nurse telling me he was gone!!! Shock, disbelief, a thousand thoughts raced through my head - priorities ... what to do first, wake my mom, call my grand-daughter in town, call - call - call ... all I wanted to do was shout WHY to a cloudless sky lit by thousands of stars that dark, cool March night. I wasn't ready for this, I had plans for the day to spend with him - I had plans to spend more than a few hours with him ... not 30 minutes before I had to go to work, for 45 minutes of my lunch hour, and not those short a few hours after work so my mom could be with him and get her home before dark. I wanted more time. I needed more time. In the end, I had to realize that the time I had with him would have to be enough ... and it was and is. Now that I reflect on the fun we had on every Saturday listening to him mock an owl, or call a turkey, or pick out hymns for Sunday Service (my favorite - His Eye is on the Sparrow - a small joke between us as he used to grease the poles in the barn to make the sparrows fall when they tried to roost for the night). It was enough time to have my lifetime of memories tucked safely in my heart to hit rewind whenever I needed that fix, that comfort, that piece of me he became. And now I have also learned what is "enough" for me to now take care of his wife of 60 years, my foster mother who is losing a bit of herself each day - her mind tells her my father is out hunting, or in the field, and will be back any day. It is bittersweet to watch, but I have gained so much from the time I spent with him and lean on my promise to him the night before he died, vowing to take care of his wife. As I look up in that dark, starry night now I see his smile, I know he is there and I know she will one day be with him and, best of all, so will I. God bless you and your family and remember when people say, I've had enough - a whole new meaning will fill your heart.
Elizabeth, Do get that urine test for the UTI if you haven't done so. The effect of an UTI in the elderly is unbelievable if you have not seen it first hand as another poster has (and I have myself just a few weeks ago). My father-in-law's wife had a stroke and went to the hospital for therapy. He is a very viable 86-nigh on 87 year old man who walks with occasional cane assistance, cooks daily, and is entirely lucid. He does have problems with some short-term memory items, but that is consistent with virtually all elderly people and in his case almost certainly NOT a sign of Alzheimer's or vascular dementia. We arrived at his home on a Sunday after he didn't answer his phone. The door was chained but ajar (a common practice to let his cats in and out). I had to kick open the door to gain entry. He was still in bed, absolutely out of his mind. Ambulance is summoned, EMT's arrive, he is spirited off to the hospital and guess what! He had a RAGING UTI. A short course of antibiotics later and he was back home with a second course of meds for the next week. Hugs and all the best, -Dan
I just wanted to add that your father and you will be in my thoughts today. I've followed your blog since its inception and have laughed, cried and sighed through your many ups and downs with him. I didn't think it would come to this point that quickly; but as I watch my own parents decline I've come to realize things can change in just a slip and a tumble or after a bad meal. Hugs and prayers for you.
Elizabeth, all I can do is echo the things everyone else has said. I've so admired your grace under pressure, determination to do the right thing no matter how it hurts, your steadfast love, and your honesty in telling all of us about your feelings, no matter how personal or non-soft-and-fuzzy. As I read the last line of your post, my heart ached for you; I felt as if I was seeing and hearing you as the child you once were, lost and bewildered and hurting at the slipping away of your father. We can't be there with you physically, but know we are all sending you hugs, love and support. You and your family, especially your stalwart husband Lee, will be in my prayers.
Hang in there, you are ding wheat is best for you and your family.
Last year I faced the same situations with my mother. It seemed like overnight, she was helpless, tired, seeing long past relatives, I worked very hard to keep her in her own home as long as possible, the time comes when it is no longer safe and hospice is around the corner. It took about 6 months for the decline but toward the end, it went very fast. She fell at least 2 times that I know of while in aa care home. I ssstarted looking for a new nursing home when she ended up in the hospital becuase of a fall and never recovered. She went to a new nursing home closer to my home on Monday and passed away on Wednesday!!! I too have no regrets. Do what is right for you and everything will be ok.
My dad has Alzheimers and ALS. The ALS is getting him faster than the Alzheimers. His wife put him in a nice nursing facility but he doesn't understand why she won't take him home. His mind is not gone enough to not realize he's in a different place and doesn't like it but he doesn't understand why he has to stay. The ALS has taken his body so fast since Christmas it's just unelievable. It was shocking to me when I realized it was time for him to be placed in a nursing home. My dad too is dying and it's heart breaking. My thoughts are with you.
When I think of my sister who recently died under hospice care (cancer) in her daughter's home, I think of her offroad biking and setting up Medieval festivals in Heaven and having a great time with some of my babies and our other friends and family there and of course Jesus. Life is a journey and ever changing. It is so sad to lose people here but there is a great future too. Prayers and blessings for your family at this time.
This may sound stupid, and I haven't read any of your previous postings, but has anyone done a urine test?? You'd be amazed how quickly a UTI can change an older persons status. My mom started falling and after 4 trips to the ER and numerous CAT scans, hip Xrays, EKG's etc., a NP ordered a Urine test. I rolled my eyes. How ridiculous!!! And guess what. She had a UTI and was back on her feet after a course of Antibiotics. It may not be this. My dad also ended up in the dining room till his death, but it's worth a try. Hospice is wonderful and you've done EVERYTHING you can. Just sit with him and talk to him and say everything you want to say. He knows you've done your job and he's done his. I miss my dad every day but I know he's hunting in heaven with all his buddies who preceded him. ANd I did my job.
I have read your blog from Week 1 and it took me by surprise to read of your father's turn around. Since I have been involved with several Alzheimer's patients during their last months, I know how quickly things can go from the current norm to something like this. I am so sorry about your dad but you have this time to share your love with him and that will be so important to you later on. I will keep you, Lee and your dad in my prayers.
My Mom's living room also became the place for a hospital bed this past spring. I have cared for her for the past 3 years. This time last year we were walking outside, working flowers together, and sitting on the porch in the evenings alot. My heart breaks for you, and I admire you for what you are doing. It's quite a journey. But one I would gladly do again for her. I agree with "Jane207" "Not everyone can know the blessing of sharing that final journey with a loved one" Nor what it gives you to know you were there for them NO MATTER WHAT. Be proud of yourself, and be kind to yourself. You did the best anyone could do.
I found your site when my coalmining Dad was diagnosed with COPD (or blacklung as we call it here in WV). I found comfort in your blogs--it was nice to know I was not alone in my caregiving for him. When he past away, I continued to read your posts to help me with my mom. As I read your last post, I wanted to thank you for sharing this with us, and remind you that you are not alone either.... Soft whispers for you and your Daddy......
We're never ready to see our parents become frail and the biggest heartache for me was my father's own realization that he couldn't take care of himself anymore. This generation that saved the world now needing help with life's basic functions. My 92-year old father lived with me the last 6 months of his life and while it was wrenching to see my once rugged, handsome father decline, it was wonderful to be able to be with him and let him know how much I loved him and how grateful I was to have time with him. I did my best to preserve his dignity and my family and I have no regrets for the sacrifices or inconveniences we experienced due to his care. He is gone now, he is no longer in pain, he is at peace. And so am I. Do the all you can for your Dad and then take comfort from knowing you did your best.
Elizabeth ~ You, your Dad, and Lee are in my thoughts and my prayers. You have shared sacred space with your Dad all these months and, and as Max Ehrmann expressed in "Desiderata," "No doubt the universe is progressing as it should . . ." Not everyone can know the blessing of sharing that final journey with a loved one, but you have helped me greatly in my caretaking adventures by sharing your experience on-line. You are not alone.
"To everything there is a season..." It will be okay. Really. xo
It is heartbreaking to live through and to watch someone you love decline in this way. I have been through it and now we are going through this with my mother-in-law too. I made a memory box for my mother and my sister. I decorated a box and typed up simple family memories and anecdotes on small slips of paper, which I folded up and put in the box. Whenever we were together and they were in the mood, I would have them and others draw some slips of paper and read the message aloud. While my mother and sister did not remember all of the things I included, they did remember some. These also triggered other memories. There was no pressure to remember but they clearly enjoyed hearing these things, hearing the names mentioned and there were many smiles. This also helped ME get through a lot of the sadness and crises.
I'm so sorry to read this. You think one minute how can I endure this for another day, week, month, year? Then the next minute, how can I endure without him for a day, week, month year? Dad was in Hospice for a few months before he left me. After living with me for a year and half I moved into a very nice assistend living facility in town and with a few months he was in hospice, a few months later, gone. I don't know if it was the change, the dementia, undiagnosed cancer or what but he want down hill fairly quickly. I would like to say I know your pain, but I don't, I know your situation all too well but we all live and feel our own pain. No matter how similar situations are no one will ever feel your jurt. May time quickly heal you heart.
Elizabeth, I am so sorry to read of your father's decline and your feelings about the whole situation. You have been so brave to write all of this for us to share. Your father has given so much to all of us in the last few weeks. Thank you for taking the precious time to share him with us. Give him a squeeze for me and God's blessings on you, your dad,and Lee.
Oh, Elizabeth. I'm so sorry to read this. Please know we here at Caring have you in our prayers and thoughts.
Having lost my father to alzheimers and recently my husband's uncle, I can relate so much to what you have gone through. Hospice is a wonderful organization and will help you get through this. Your love and devotion to your dad has been very inspiring. My thoughts and prayers are with you all.
My thoughts and prayers are with you as you courageously face this new challenge in the cycle of life. God bless you.
I've read your blog faithfully every week and my heart sunk when I read this entry :( I'm so sorry- I will be keeping you and your family in my thoughts and prayers.
Oh, Elizabeth, I'm so sorry! Hospice is great, they are so helpful and are there as much for you as for your loved one. I hope he is without pain and comfortable. Know that you did everything in your power to do the right thing for him. Even if he cannot express it, I'm sure he is very grateful to have had you care for him. Love him as much as you can while he is still here. I lost both my parents very suddenly within 6 months of each other. You are not in for an easy time in the days, weeks and months ahead. But tell him how much you love him and be glad you had this time with him. My thoughts are with you. Suzanne
I so enjoy your blogs and look forward to reading them each Friday. I was so surprised and saddened to read in today's blog that your dad is not doing well. You and Lee are such an inspiration; you love for your dad is evident in every one of your blogs and in your constant care for him. You, Lee and your dad are in my prayers!
Of course, don't give up - but also take every opportunity to express your love and appreciation to your dad. Hold his hand, fluff his pillow, and tell him all the old funny family stories. If the worse happens, it will ease your heart to have had this time with him. If he recovers, it will have been a quiet, loving time for the both of you.
2 yrs ago i was facing the same thing with my mom. hospice was set up,she was talking only to her dead relatives and she could no longer walk. doctors gave her a month,maybe.somewhere around the third week,she woke up.she has been about as good, healthwise,as she can get,she's 88.don't give up,he's not dead yet.