This is week 26 of our odyssey in home care for my father. For six months, we (my husband, Lee, and I) have taken care of all of Dad's needs. I want to take a moment to reflect on how things are going.
In an early post, I discussed the various types of 'costs' associated with caring for a loved one in the home. I grouped these costs into three categories: soft costs, hard costs, and human costs. Let's see how we're doing in these areas, six months in.
Soft costs: The incidental costs of caring for Dad at home have been greater than we anticipated. We burn more gasoline, for example. Also, much of our furniture has been damaged. I hate to sound shallow, but I'm upset that one of my upholstered Thomasville chairs is effectively ruined from Dad's peeing on it, accidentally, and then spilling chocolate syrup on it, as well. As for why Dad was sitting in the chair to begin with, it's simple: Of all the furniture we have, Dad found that particular chair to be the most comfortable – and who's going to deny Dad a comfortable chair in his golden years? At any rate, I've discovered that the physical damage to our surroundings has far exceeded what I expected. I was naïve and unrealistic not to understand that a frail grown-up with dementia couldn't help but wreak havoc on furnishings.
Hard costs: As expected, these costs have accumulated over time, but only the cost of dining out has really exceeded our expectations. Dad likes to eat out frequently, and Lee and I try to pick up the tab about half the time, even though we wouldn't normally eat out as often. On the plus side, we haven't really seen any increase in our utility bills, except perhaps the water bill, which is higher because Dad loves to garden.
Human costs: I feel like such a weenie. I thought caregiving was hard at the beginning of this journey – when Dad could still ambulate well, converse, and take his own meds. Now that we're getting down to the nitty-gritty, with Dad increasingly unable to ambulate or take care of his own activities of daily living (ADLs), I'm finding myself more stressed than ever. And I know Lee feels the same way, even if he hides his feelings behind that placid, masculine facade. To my dismay, my own feelings frequently spill over in waterfalls of tears, and the sheer anxiety of feeling unprepared and incompetent to handle what the next day might bring really takes its toll on me.
How long will this caregiving odyssey go on? Will it last another six months? Six years? Frankly, my stress level at the moment tells me I can't last another six months. Caregiving is so much more emotionally and physically exhausting than I ever imagined.
Along time ago, at least 22 years, You were hit with an illness, and your eyes filled with tears. No doctors or medicine, could cure your disease, or help you through your struggles, as you begged them, with “Please?” Each day that passed by, your memory became a blur, and all we could do, was pray for a cure. The simple little things, like tying your shoes, was so hard and frustrating, and angered only you. We held you, and hugged you like never before, because sooner or later, you would know us, no more. Then that day came in about the fifth year like a roar, and I was no longer your daughter, but the woman next door. How hard it was, to see the man that we knew, was now all alone, and nothing we could do. His illness progressed, and now his body was down, he was weak and so tired, and his face, only had a frown. I read him my poems, and prayed, as I held his hands, and I wiped all his tears, as I combed his white hair throughout all those years. He got extremely sick, and his body couldn’t handle anymore, but he listened as I told him about, “Heaven’s Grocery Store.” How beautiful it would be, and the Angels would sing, and comfort him forever, as they held him in their wings. I told him, his body would be new, and his mind would be clear, and he’ll remember us all, as he did before the tears. As I sat there by his side, I felt the cold in the air, and my heart was breaking as I knew it was goodbye in despair. So then he took his last breath, and he opened his eyes, he looked up at me, and I knew then, he knew mine! He had a smile on his face, and his eyes were so clear, like the daddy I knew, back then in my years. I whispered, I love you, and I’ll see you not alone, but with your family and friends, “It’s OK to go Home.” Then my brother, my son Justin, and I Layed across his still body, and said the Lords Prayer, as we
My husband and I are just about to embark on caring for both of his parents full time. My husband has been living with them the last 3 months and has tried to convince them to move in with us. They will not be convinced so we are going to just have to move them in without their "approval". My Mother-In-law is 87 and has Alzheimers. I figure she's between stage 5 and 6, she is physically very fit and will likely live a long time. My Father-in-law is 86 and has dementia, is incontinent and a very hard time walking. Needs help getting in and out of bed, changing clothes and diaper etc. I've been reading these posts to help prepare me for what's comming though I do understand that NOTHING can truly prepare anyone for caring for people in their condition. My mother died years ago from cancer, I was her care giver and thought that was hard but realize that was a cakewalk in comparison with what's ahead for us.
I can relate so much to most of the stories told here. Thanks for being so honest with your thoughts and feelings. My mother too had CHF, vascular dementia and various other ailments. I cared for her a total of 15 years in some fashion and way. She became very difficult the last 2 years. Combative, suspicious, insulting you name it. I knew before things got too bad that I could not have her in my home. Making that decision before I needed to was a tremendous releif as when the time came, I knew what I had to do. She needed full time care the last 6-8 months and finding the right place for her was such a releif. They treated her with respect, and helped me adjust to all the changes in our lives. the hospital social worker was super and had seen it all before so I was not as humiliated as I could have been. Please do not wait to take back your life. Let the professionals help you care for your loved one. You will be better for it and so will they☺
Thanks for all the insight. I tookcare of my mother for just about all of my adult life thru one crisis or another. When health problems started in about 1994 when she had a massive heart attack, it was a long hard road. She developed vascular dementia along with CHF. The last two years were extremely hard even though she stayed in her own home until the last 6 months. We were fortunate that I had already had her qualified for MediCal and Medicare so all of her expenses were covered at the end. I say all, but the personal costs were over the top. She too had to go to the store everyday, eat out several times a wek and just spend money she could not afford. She too accused us of stealaingher money, hiding things from her, and just plain hard to handle insults and drama. I never considered bringing her into our home as we would not have been able to handle her emotionally and physicaly. She no longer was driving(A good thing) but only after I approached her doctor to help in thismater. I could go on and on, so many of the stories told are my story. All I can say is, be prepared, do not wait too long to decide what would be best for you and your loved one. I have no regrets now as she passed away last December. I know I did all I could for her and then some. Only after she passed did I realize how much time and eneergy I spent on her. Every day back and forth, sometimes sseveral times a day. Because she was compative at times, findind a good facility that would take her was a real problem. Hang in there, keep searching and let the social services of the hospital help you if you are coming from that kind of situation. They know their businesss and have seen just about everything. Thank goodness my husband was so helpfull and never failed to help me. I have nothing but admiration for those out there cating a caregivers. They are special people and a blessing for thosse of us who cannot fulfill that roll 24/7.
My sister and I have been taking care of my father for approximately 3 years (since my mom's passing). He has had problems walking during this 3 years but in January of this year, he had pneumonia. He also was diagnosed with stage 1 dementia. My father has refused offers from my sister and I to move in with us and he does not want to go to an assisted living facility. Since January, dad has deteriorated quite a bit. He is now incontinent and can't walk at all. When he came home from the hospital after his pneumonia, he was refusing to eat/drink anything. We were told by his doctor that if he continued the refusal of food and water he would live for 5 days to 3 weeks. We got a live-in caregiver for my dad (in his home) and dad now eats/drinks, etc. His memory has gotten worse and my sister and I are wondering how long this can go on. Even though dad has a live-in caregiver both my sister and I go to see him every day. I can't imagine not being there for him. He took care of us all of our lives, now it's our turn to help him. It can be very disheartening at times but I will do whatever I can to help him.
i resonate with most of you. many of you have told parts of my story. best wishes to you all. without my faith in the Lord I would have gone postal long ago. He will take you through it!
I wish I could click "like" or reply directly to several specific people, like you can on facebook. i resonate with most of you. i won't tell my story here, but you have all shared parts of it. best of luck to you all. rely on your faith, it has saved my sanity! the Lord will take you through this.
One thing that has helped me in the past couple of weeks is the "Are You a Caregiver" quiz. After taking the quiz I realized that I do NOT have a caregiver personality, but, rather an caring advocate - therefore, this process is more stressful than it is for those with a true caregiver's personality. Luckily, we have someone who stays with Mom during the day while I work with a caregiver personality, but, she too is becoming stressed after these 7 years. The Mom I knew is gone, but, her body is strong. Knowing how my Mom dealt with others I know she would not have taken anyone - me included into her home to care for after they were grown - she is a taker, not a giver.
Barbara N, Not all of us feel this way. I am taking care of my mom who is only in her sixties. She has Alzheimers and other health problems. I would happily buy 6 livingroom sets during her stay here just to be able to spend these last years she has left taking care of her. She would do it for us if the situation had been reversed. Take care.
What has helped me in this article is knowing that I am not alone in feeling totally stressed out emotionally & physically. My plight with my loved one (dementia) has been going on for past 2 plus years. All though I do feel blessed being with my Mom during her latter years in life (she just turned 93 years), prayer has been my God sent.
great stuff
Elizabeth, I follow your comments every week and always find something in them that I can relate to, with my own situation of having my 84-year-old mother living with me, with Alzheimer's (she has lived with me for 4-1/2 years). This week's comments struck a chord with me on so many levels -- the wreaking havoc on furnishings, the constant clean-up, the human costs -- I see a counselor, I go to a monthly support group, I get out and walk every morning before work -- all to try and maintain some degree of sanity. My mother really has no sense of time anymore, and so went to bed at 5:30 PM yesterday -- only to get up at 7:00 PM, thinking it's morning...............The stress has caused me to start grinding my teeth in my sleep (apparently for some time now), to the point where I've had to recently have dental work done and will now have to wear a night guard to prevent further damage. The stress has also aggravated my asthma far worse than it used to be, controlled (thankfully) by a prescription which unfortunately comes with a $40-per-month co-pay -- something I did not need prior to becoming a caregiver. I can also relate EVERY DAY to asking yourself "will I have to do this for six more months?" "Six more years?" I have to be honest with myself that I do not believe I can face this every day for another year. Thank you for your writings. It helps tremendously to not feel alone -- to know that you're not crazy for the feelings, emotions and stresses that come with this journey.
A few things to consider.....Visiting Angels for a few hours is very helpful. Also putting them into respite care for a night or a few nights. They will need to come out and do an assessment of the home and the individual. Trust me it's worth it. Be honest to yourself and your loved one. The thought that goes through my mind is would my mother in-law want her family members to care for her the way a child needs to be cared for?? No she wouldn't want us to, but right now that's what my father in-law wants to do. This is very difficult because he doesn't get it nor is he a trained caregiver. Seeing what's going on makes me upset. There needs to be family intervention from all involved. I think the others are in denial. They don't see what's going on on a daily basis or even call to see how things are going. They do talk to their Dad once in a while who is very much in denial and can't accept what's happening to his wife. I am not sure what to do or how to approach the situation, but things are getting worse and she is now declining very quickly. We are doing our best for the both of them but now it's time for an intervention.
I am an RN who has been working in home care for the last 9 years. I am also a "survivor" of Alzheimer's as my dad had it for about 5 yrs berfore he passed away. Yes, it is a costly disease and we always want to do what is best for our loved ones, but sometimes your best isn't good enough. I always tell family members about what to expect with these types of patients and what the price of the emotional, physical and financial cost can be. For all of the above PLEASE find a support group for yourselves, otherwise you will lose it. If there are other family members, try and have them help... even if it is for a couple hours for you to have some "me time". The other thing is getting the loved one to an adult daycare, many are qualified in caring for taking care of these individuals and medicare or medicaid will pay at least some of the cost. You can only do what you can and sometimes when you can no longer do it, unfortunately the loved one may have to go to a nursing home. It sounds terrible, but you are also entitled to a life.
I have been caring for my Mom for 7 1/2 years now - she has dementia, plus emotional problems, wheelchair bond and incontinent. I too was completely unprepared for the damage to the physical things in our home - furniture, carpet, etc., plus the mental baggage I carry from a child when she acts up now - knowing how she acted at times when I was young. At this point, I don't know how much longer we can go on as her being in our home so long as put "space" between my husband and I, we have lost our privacy and the mental toll is starting to really wear. I now advise anyone who asks me about caring for someone in their home with dementia to think it through carefully BEFORE they bring that person into their home so that they are prepared better for the situation.
I too am caring for some with dementia. My mother-in-law. She has been in our home for the last 17 months. I can so relate to how you are feeling. My husband works 50-60 hrs per week, and I am experiencing all of the emotions you talking about. Expecially the guilt. In the evening when my husband comes home, we dinner at the table, and he will a great time with his mother, listening to stories from his childhood, she doesn't remember anything else. She'll head off to bed, and hee will then head off to computer for some down time before bed. When is my down time? I would become so short tempered at times, and usually over nothing important, like washing clothes. She only washes 3-4 items a time on full load setting! I try to explain about doing full loads and she looks at me like I am growing a third eye on my forehead! Our household expenses have almost doubled since she moved in on a full time basis. Unlike you, I have a full house. My son and daughter are still living at home, and they both work full time. But, they help out whenever possible. My 19 month old grandson lives with us too. He gets along so well with his great grand mother. They have great conversations about his toys, she tells him about her day. At times it's really fun to listen to them. But, I was still angry all the time and feeling guilty about the anger. I was beginning to feel like a sandwick, for lack of a better word, elderly person on one side, toddler on the other. So, I finally told my daughter that I could not watch both mother-in-law and grandson any more and maintain my sanity. So now he is in day care for at least 3 days a week. It has relieved some of the pressure, thank goodness. But as life will have it, the pressure was recently added along with the guilt again. My 80 year old mother is ill possibly with cancer. She is still going through all the tests. She lives about 450 miles away, and I am torn about caring for my mother-in-law and caring for my mother. My brother does what he can, but he is in poor health and uses a walker to get around. So, for now I am trying to live day to day, keep my chin up, and keep a positive attitude. I love your blog. It has helped me greatly! I don't feel so alone any more. Keep writing.
When do you have control again? We moved in with my in laws about 2 years ago both were in their 90s and needed help. Father in law passed away in Dec 2009 and now mother in law has gone down hill very fast. Last night at 10:00 she would not go to bed until we "packed our bags and left". My husband told her we would be gone in the morning...she went to bed. 2 minutes later she was back up telling him she didn't want us to leave she needed us. Finally my husband was able to go to bed at 12:00. She was up again at 3:00 just starring at the ground in our entry way, he put her to bed again. At 5:00 she was opening our door looking for us...and the day starts all over. She is showing signs of the end as far as her dementia however her body just keeps going. She has no health issues as far as body...We try to be loving but she is so paranoid of us,the voices are telling her we are stealing from her in her mind. If we put her into a home how will that affect her? us moving in she feels angry now we move her out of her own home...She has always told us "don't put me in a home". We just pray that she gives up and dies in her sleep peacefully.
I can relate to all the comments you are making. My Mom has been in our home for the past 2 months and every day is a challenge. I am an experienced care giver of dementia but find with my own Mom it is much more taxing. I know that When She says She is going home in the morning I can Tell her I will miss her and not worry because by morning She forgets. Our water bill has increased 2 fold because of the extra laundry and She leaves the taps running. I have to take her out for lunch or just tea non stop as She needs to be entertained non stop so these are cost I would not of had not to mention the gas. God Bless all of you who have taken on the challenge as many can not or will not!
These are some of the same issues I am concerned about in living with my mom. I tried to read up and prepare myself, but as her condition deteriorates, I feel less and less capable of caring for her safely or sanely. So I am now making plans to find her a home with folks who are trained to do this. Then I can concentrate on helping her remember her past as long as she can. I guess I feel quite abit of guilt over the not feeling capable of EVERYTHING, but I don't see that I have sufficient patience to be what is best for her. I very much appreciate hearing how much emotional struggling goes on for others, as then I don't feel as tho I am alone in this.
My husband and I cared for my father for his last seven years. He lived with us for 19 years. The last three years he was bedbound. He had congestive heart failure and vascular dementia. It was my pleasure to care for him. I could keep up with most of his rememberings and recollections of years past. Cranberry stains on beige carpet are just a whimsical memory. The broken arm on the chair a funny little memory nudge. Let go of the material things and hang onto the love. You will never regret it. For three years my husband and I did almost no socializing or eating out. Since Dad died seven years ago, we go everywhere and do everything! Truly "to all things there is a season!" The saddest thing now is that my husband is showing signs of dementia. My prayer is that we both retain enough clarity of mind to care for one another. Our children are grown and gone. I pray if I must I can provide again. It is so different with a spouse than an aged parent. Those reading this, please "light a candle for us."
My mother is in assisted living and I feel guilty not having her in my home although my brain knows this would never work. This helps my heart.
And to Barbara N.: having seen this disease, knowing I have no children (and probably few finances given this recession's longer term impact on my life), I am already looking at my options to control my own destiny should I be fully present and aware if I ever receive a diagnosis of Alzheimers or other terminal debilitating disease. I have no intention of leaving myself at the mercy of a state home with all of its nightmarish stories of care. With Divine and genetic luck, and hopefully progress in managing or reversing these diseases, I hope we can all fair better. But I'm coming up with my own Plan B.
Been following these blogs before and during my 'imposed' caregiving (imposed because it made sense since I was unemployed.) Lived alone by choice for 25 years, and find myself with an 87 year old child who would not get better. I finally had to throw in the towel to keep a part time consulting contract (after 20 months of nothing or just unemployment), and hopefully be able to accept positions requiring travel. I coped by disconnecting, though the combative aspect of my dad's dementia didn't always allow that. So I got him into the VA - finally. First night there, he had a stroke, never came out of it, and died a week later. He was upset at first, then got into chatting with staff, and later that first night, who knows? May have had an anxiety attack, may have fallen and accelerated the stroke, may have had the stroke then fell. Bottom line: I lost my dad to dementia for all intents almost two years ago. Yes, there were flashes here and there, but as many of you know, the personality changes caused by dementia leave you with a whole new and sometime mean person. I spent the last year walking away from my father rather than arguing, because I didn't want to remember that. Losing him was really a blessing. My brother and I always hoped that his cardio diseases (and there were many) would kill him before he got to end stages of Alzheimers'. Mercifully, it did. He was a proud Navy pilot who never comprehended the disease he had, and would have hated being managed by tubes, diapers and fluids. He's gone, and at least I can remember a father who was still functioning as best he could in his own fiesty way. So, if placing your dad in a home preserves your sanity, memories of him and your finances, don't hesitate. In the long run, you will both be served by that decision.
Well I'm the with dementia just beginning. I'd like to apoligize to my daughter ahead of time for all the bad things that I it sounds like I'm going to do. This is very upsetting to me to know that I'm going to be such a terrible burden on my family. I do know that if my kids were in need of my help I would be there with open arms and heart and be thankful for everyday I have them in my life.
Amen to all you said. It's a long hard road, and I appreciate sooo much all that you are doing. My key tools for my dad arethings like: lots of stain removers, disinfectant wipes, deoderizers,an extra trash can (for that little corner that he thinks is the bathroom at night) and a solid rug shampooer. The easier the better. It's amazing what I saw as a "waste of money" a few years ago has become a staple while I am staying with my father, helping him stay free and giving him the best care I can. Those tools are an investment in my sanity! I also have adopted a kind of detachment.... a different set of priorities. Since I have a good rug shampooer, I know I can relax more knowing that whatever he does, I can address later. I get a better nights' sleep and am less likely to grump at or about him and raise my blood pressure over a wet rug. Keep writing... love your insights!
I know where you're at right now and I hate to be cliche but, just take it one day at a time. Really thats all you can do. Don't kick yourself when things go bad, put them behind you and move on. There were days with dad that I thought I wouldn't last until the end of the day much less the week or month. But when the day was done, that day was DONE. I woke up the next day with a new attitude and didn't look back with a, "could of I done something differently"; of course I could have but that day is gone. Im sure you and Lee go through that too. One day at a time, and while youre at it, research your options so when the day comes that you can't do it anymore you wont be scrambling to figure something out.
I hear you, sister! We built this house 4 years ago with all new appliances. Since his mom moved in with us we have had a broken dishwasher (she couldn't get the top shelf to pull out because something was stuck so she just yanked on it, breaking a support), and both my washer and dryer are making funny noises they shouldn't make after 4 years. She does laundry every day while we are not home. Also my stove blew up but I don't know if she had anything to do with that :-) Hubby keeps finding the sliding glass doors unlocked which scares me because anybody could come in while she is here by herself, or in the middle of the night or while we are away. We're trying to remember to check them constantly now. We go out to dinner once a week now to get her out of the house and it was suggested that we should always at least split the bill so that she pays for her own meal. Actually the support group leader said that she should be paying for all the eating out since we normally wouldn't do that, and it would be considered part of the cost of her care. Plus the cost in your personal life. Not much alone time for hubby and me. Be prepared -- our support group leader took care of her father for 12 years. The key is realizing when you can no longer give the care he needs for his safety and your sanity. Maybe that's when it's time to turn to a care home for assistance. I recommend you at least have a good idea of what is out there now so that when the time comes you are not scrambling and end up putting him some place you are not comfortable with. I'll be thinking of you...
I'm not a caregiver (yet) but it seems necessary at this point to bring in respite care so that you and your husband gain some much needed alone time. Thank you for writing - it has given me valuable insight to what may happen soon with my mother.
This blog was so helpful. I never thought of breaking down the cost of in home care for my husband. Suddenly an organized picture came into focus .Sometimes frustrations put me in a fog and I am only dealing with the immediate. Please keep writing ... you're wonderful