posted on October 30, 2000 07:32:44 PM new
I've spent most of the day back and forth at the hospital with my father-in-law in I.C.U.
His congestive heart failure has taken its toll on him and he now has pneumonia as well. The doctors are being very cautious about the prognosis and I suspect from what they've said without saying it, he's in his final stages. Maybe months - I'm not sure and I suspect they really don't know.
For his safety and well being we know that there have to be some immediate changes. At present he lives by himself (widowed almost 4 years) His house is huge with a large landscaped yard. He has resisted selling it because it was he and his wife's dream home where they raised their family and I think in his mind it will always be her home.
He has three sons and daughter in laws living close by. We all agree that we should do whatever we can to help him stay in his home for the time he has left. However, saying and doing are two different things. My biggest fear based on past history is that my husband and I will end up being the ones that take care of everything. I don't mind because I love him, but I'm not prepared at this point in my life for the stress that that will bring. I have too many other issues I'm dealing with right now including a sister who is very ill and needs my help. I just don't know how much farther I can stretch myself without breaking. He will need almost 24/7 care because he gets disoriented very easily. I'm afraid that if someone isn't there he won't eat or will take his medication incorrectly. Plus, it's a scary time for him and I just don't think he should be alone.
I don't want to sound cruel, but I think that all of this should be handled by a written plan - an agreement between the three families as to who will take responsibility for what aspect of his care. When I mentioned that to the younger of the brothers he acted like I was a green eyed monster. He said that everyone will just do what needs to be done. The truth is it doesn't always happen that way. In fact, he finished his sentence with... "but I'll only be available on weekends."
I wonder if any of you have had to deal with this issue yet and how you handled it? I'm sorry for the long post but your opinions would really be appreciated.
posted on October 30, 2000 08:04:11 PM new
My heart goes out to you. 10 years ago this December my father died of the exact same ailments in the ICU on New Year's Eve. I was worried sick about how my mother was going to take care of him alone as we have no other relatives in the area and I was living three states away due to my job and not in a position to help very much.
I do not mean this to sound harsh but from the way the doctors are acting, your father in law may not be returning home. I know getting a straight answer out of a doctor on this issue at this time is just about impossible---that's how our doctor was and our family had known him for 25 years!
In the event that your father-in-law does leave the hospital, I urge you to look into getting him some 24/7 nursing care and getting the siblings to chip in and pay for it. You can be there to visit but you should not be trying to take care of him all yourself. Caring 24/7 for a person in this condition when it is a close family member whom you love, and you are already under pressure from other family members, would be very difficult. If you can get someone else who does not have the same "personal" interest to take over basic care, you and the rest of the family can just concentrate on sharing your time and your love and dealing with grief rather than running yourselves ragged. Please consider this option. It is what I hope my mother would have done if my father had left the hospital as I was working three states away and she had no one to help her and would have quickly gotten worn out trying to look after Dad, who absolutely did not want to go to a nursing home.
________
I never had one, and I didn't want one, and I don't, so now I do...
posted on October 30, 2000 08:28:47 PM new
Here in Canada we have a wonderful non-profit organization called the Victorian Order of Nurses. They are best known for the home health care/visits they provide for dying patients and the emotional support they provide to the families. I've known two acquaintances, both diagnosed with terminal cancer, who received regular home visits. I remember the widow of one being so very grateful - in fact, donations to the organization were requested in lieu of flowers for the funeral.
I would definitely check to see what the options are regarding regular home visits by a nursing professional.
posted on October 30, 2000 08:58:07 PM new
Here in the states the Hospice organizations do the same stockticker. You can find out at the hospital, (nurses, Doctors, or clergy will know) the contact info for the hospice organization in your area.
The people that work in hospice organizations are very knowledgable and understanding of cases like this. They'll be invaluable in this very difficult time.
My thoughts are with you mybiddness.
edited to add:
The one I've dealt with based cost on ability to pay. I don't believe anyone ever gets turned down. They will only work with terminally ill patients, so you'll have to get a prognosis from the Dr. saying that.
[ edited by UpInTheHills on Oct 30, 2000 08:59 PM ]
posted on October 30, 2000 09:08:06 PM new
Mybiddness - I've been in this situation and I can tell you that you are exactly right in wanting a written schedule. That's the only way to ensure that your Father-in-law is cared for and that all family members do their share. It's been my experience that those who don't want to do their share will vehemently disagree with any suggestions which forces them to commit to helping.
The best solution, if you can afford and can find quality care, is just as Netlawhopeful suggested. Hire a caregiver, even for five days a week, 24 hours per day (if need be) and take turns spending weekends with your Father-in-law. (The reason for this is that week-end help can be extremely expensive, at least in my area).
Good luck to you and your father-in-law. You are to be commended for being such a caring person.
Edited to add: If your father-in-law will be home-bound (unable to leave home without assistance and unable to travel/shop, etc.), Medicare will usually pay for a nurse to look in on him once a day if he is taking a particular medication, etc. These rules have changed drastically, however, but at least check into home care. The social worker at the hospital should be able to give you info on this program and even help you to get it set up if your father-in-law qualifies.
posted on October 30, 2000 09:36:53 PM new Netlawhopeful I've thought about the possibility that he won't survive to return home. I have mixed feelings about that because I know that he is ready to go and has a very difficult time with being dependent on others. I know that nursing homes are meant to help in these type of situations but at this point I'm still hopeful that we can work out a way to keep him in his home. My mother in law passed away on Thanksgiving morning four years ago. During the last few months of her life we were urged to put her in extended care. Instead my father in law and I took shifts taking care of her through her last few months. It was without a doubt one of the most excruciating times of my life to watch her fade away so slowly - but so quickly. But, I've never regretted it and I think of that time as a blessing - a gift from God because it taught both of us so much. I just don't think I'm emotionally ready to go through it all again with someone I'm so close to. That's why I just have to have some assurance of some help from the other siblings.
They're quick to give opinions and make promises as to what they'll do but if our past experience with my mother in law is any indication of what I can expect... I just think it needs to be formalized - and, I know that sounds cold.
We had hospice care come in with my mother in law toward the end and they were really a blessing to us. But, they only came for visits and check ups. I'll have to check and see if they have overnight care available? That's the time that I'm most worried about because all of our families have children and it would be very difficult for any of us to spend the nights there on a continual basis.
Jada I hope you're right and that Medicare will help out. Considering his age and illness and the types of meds he's on he should (I would think) be a good candidate for help. If not, maybe we could all pitch in to pay for someone to spend the nights with him. It's all still too new and too confusing.
I just don't want to go into this with a lot of promises that aren't going to be kept. But, I've got to find a way to make that point with the siblings without causing a big family fight. I tend to come across very in the face and this is the way it's going to be. I think that makes them defensive - it gets their attention but doesn't seem to be enough to make them step up to the plate. I'm rambling. Sorry.
posted on October 31, 2000 04:57:42 AM new
Wow, I'm sorry to hear about the difficulties that your family will soon be facing. While my dad was in the last stages of CHF, he was able to be at home, and cared for by my Mom. He was able to get around fairly well right up until he went into the Cleveland Clinic.
However, my sister and her husband went through a very simiiar situation to what you describe. His mother and father were both ill, and took much care in the home over the last years of their lives. They lived very close to my sister as well. There are two sisters and one brother who live in the area. When their Mother passed away 4 years ago, their father really went down hill fast. He required someone in the home all the time. This fell on the 4 siblings to arrange between themselves.
To make a long story shorter, the 2 sisters and 2 brothers barely speak to each other now. It was a nightmare of unfair duty sharing, nasty phone calls, you name it, it happened. My brother in law, since he lived the closest, was the one the brunt of the care fell on, even though he still has two young children and a wife. He spent every other weekend, and every other night at his father's home. This after working a 50 hour per week job. They did eventually bring in some outside help, but 24/7 care in the home is expensive, just do the math. It is way more expensive than even a private nursing home. $8 per hour X 168 hours per week is $1344 per week. Caregivers are hard to find, especially ones who are dependable. The day to day logistics of caring for someone this way are huge and complicated at best.
You are right in saying that it is easy to speak the words but more difficult to do the stuff that needs done. Are you all prepared to be nurse to your Father in law? Will you be able to bath him, dress him, feed him, basically care for him as a baby is cared for as he worsens? These are very hard questions but questions that need dealt with before it happens. Putting things in writing is a great idea, but not nearly as easy as it may seem. It is difficult to even think of all the scenerios that need covered before they happen.
Hospice care is great for those at the end of life, but they don't get involved until someone is near the end. Visiting Nurse services have been drastically cut back in recent years. Even if you can get one to come in a couple of times per week, it is a drop in the bucket when compared to the amount of care he will need on an hour to hour basis.
My Father, when almost unable to even walk across the house to the back door, still had to drive to the doctors office or the hospital for his bi-weekly Pro-Time blood tests when Medicare would no longer pay the visiting nurses to go to him to draw the blood.
What this all comes down to is this...sometimes families have to make the tough decisions when it comes to caring for elderly family members. No one wants to place their Father or Mother in a nursing home, but sometimes it has to be done. They deserve good safe care, but not at the cost of tearing the entire family apart and causing long lasting bad feelings. My sisters in-laws will never be the same, and that is a real shame.
Good luck to you and your family as you face this...talk to the Social Workers at the hospital as well. They are a great source of information and help.
posted on October 31, 2000 06:08:50 AM newMeya You've given me a lot to think about. It's going to be a complicated decision. I woke up this a.m. feeling that the logical first step is going to have to be to help him sell his home. He's needed help with maintaining it and the yard over the last few years and that's not going to change. I can see now that there is no way we can take care of him in his condition and keep up with maintaining his home also.
When I'm dealing with tough issues I try to eliminate the unnecessary stress causers first - so that I can get things to a manageable level. In the light of day this a.m. I can see that even though he may not want to sell his home it's become a laborous albatros around all our necks. He's hanging onto it because of what it was and what it represented. My husband agrees with me - I'm not sure about the others.
You know the great thing about this place is that I can think out loud and get feedback that helps me look at all angles. You've all given me more food for thought
posted on October 31, 2000 06:53:10 AM new
I didn't even think to mention this, you need to make sure certain legal aspects are in order first of all. Someone needs to have a Power of Attorney to be able to pay bills, and handle all the financial aspects. You've got to make sure his bills are being paid etc. Your Father In Law also should get a Living Will and Durable Power of Attorney. These two documents specify his wishes for medical care, and appoint someone to make sure his wishes are carried out. The Durable Power of Attorney is different from the normal Power of Attorney. He also needs to have a current Will.
Believe me, I know the red tape involved. I was the primary care giver for a Great Aunt of mine from 1990-1997 when she passed away. When she had her first stroke, she had no will, her papers were a disaster, she had money in 6 different banks, it was awful. While many people don't want to think about this stuff while they are healthy, you must have your affairs in order. If not, it can be a nightmare for the family. I had to go through finding out all of her financial information, ran from bank to bank, meetings with my lawyer, it took weeks. And all this while my kids were still fairly young and homeschooled.
I learned enough going through that, and watching my Mother go through taking care of her Mother, that I could probably write a book.
posted on October 31, 2000 11:50:08 AM new
Mybiddness - One thing that I forgot about - you might want to check into reverse mortgages, rather than having your father-in-law sell his home. This allows the elderly person to stay in their home until they pass away and may provide money for nursing care since he will be basically selling the house to the government but still allowed to live there.
If you do go this route, check with someone you trust completely. There are a lot of scams out there that prey on the elderly and I'm sure this program has their share of them as well.
You might check the Housing and Urban Development Agency's website for further info. If I can help you further with this, let me know and I will gladly find what I can.
posted on October 31, 2000 05:28:13 PM new
Thanks Meya My father in law was an estate planner for most of his career so thankfully he has everything in very good order. When my biological father died many years ago my step-mother actually had to go to court to be awarded custody of their son because she wasn't a U.S. citizen (Japanese) I was just a teenager but I still remember what a mess the poor woman was in - all because my dad didn't have a will.
Jada I've heard of reverse mortgage but haven't ever looked into it. He doesn't have a mortgage but the house is just so big that it's become too much for him to handle - and especially this last year. My husband suggested that one of our 3 families just move into his house temporarily... I don't know how that would work but it may be a better option than selling his house right now considering.
The doctor said today that if he does recover well enough to be released from the hospital he thinks he'll need at least a month in an extended care hospital to get help in rebuilding his strength and balance. I guess this is one of those things we'll just have to take one day at a time.
posted on November 4, 2000 09:01:36 AM new
Just a thought I had...do you think it would work to maybe just have a nurse/caregiver come in during the day (8 hours) to do the
bathing/feeding/dressing/medication? Then family members could take turns spending evenings and nights with him, getting him in bed, taking care of the house, bills, etc. That way the cost would be cut by 2/3, and a professional would be there durin the day while family members work or whatever. I am sorry this is happening, we went through this with my mom, it is truly a nightmare. I hope this all works out for you and your family.
posted on November 4, 2000 10:24:30 PM new
Thanks for your idea Baileejean. We put him in a transition home today where he's supposed to have physical therapy for a few weeks. I think your idea is a perfect solution because all of the siblings really want him to stay in his home. My husband is the oldest and the one who is on the legal paperwork to make all the decisions - it's been tough on him. He has a lot of mixed feelings about it all. I've given him my opinion, but since this is something so personal to him between he and his dad I'm trying real hard to just support whatever decision he makes. Thanks again.
My thoughts go out to you. 2000 has been a horrible year, hasn't it?
My advise would be to get some caregivers. The hospital should have a list of them to give you and I'm sure the social worker has spoken with you already. Caregivers can really take a load off of your shoulders.
Your husband needs to look after himself right now, too. Just going to the hospital to visit can drag you all down. Be sure to take care of yourselves. It looks like the rest of the family may have intentions but when push comes to shove will let your family handle most of his care.
We also have visiting nurses here who come once a day to check everything and they can set up giving baths, etc. It is free but only lasts for awhile.
About caregivers, check them out throughly. Call people they have worked for in the past. You will be glad you did.
I wish you and your family all of the best in this trying time. I know how overwhelmed you feel.
posted on November 5, 2000 02:32:24 AM new
My Mother and Father raised 6 children. Early in our childhood, our parents made us promise to never put either of them in a nursing home. (As an aside, Please NEVER ask this of your children.)
After Daddy died in '82, Momma just seemed to give up. She developed diabetes and though she took her shots and tested her blood everyday - she continued to eat whatever she wanted. We convinced her to sell her house and move closer to my older Sister - who unknowingly become 'Daddy'.
The last two years have been the worse of my life.
Mommas' diabetes worsened and she developed problems with her balance. Trips to the doctors could find nothing, yet she continued to fall and as she said 'wobble' when she walked. She began forgetting 'things'. When my Sister would tell me about how forgetful she was - I would later dismiss it as her misunderstanding. More trips to doctors, increased insulin - more medications. She was taking so many meds - we had to get one of those cases to put your meds in for each day - or else she would forget to take them. My older Sister continued to handle all of this on her own - and I am ashamed to say - I let her.
Then about a year ago, it all began to 'boil'. A race to the hospital at 2:00AM brought me face to face with the 'life' my Sister had been leading - trying to care for our Mom.
Momma had fallen during the early evening - she could not get up - ended up 'dragging' herself down the hall and to the phone. By the time she reached the phone and was able to call my Sister it was past midnight. When my Sister arrived - she only lived two blocks away - she said Momma was covered in blood - there was blood from the hallway to the phone. Her gown was covered in blood. My Sister and her husband 'loaded' Momma up and took her to the Emergency room.
We found out that night that Momma now had developed varicese (sp) - and could not be left alone, a fall could kill her.
When I did get to see her that morning, she was white as a ghost. There were so many machines hooked up to her - the image will never leave my mind.
Two weeks later they released her. She was doing better, but the fall and strain had damaged her heart. Not to mention, at some point along the way - her liver had been damaged. (Momma is not a drinker and never was.)
At this point, all six of us children had to face that our Mother was getting older and was in fact dying. We also had to realize, we could no longer expect my older Sister to deal with this on her own.
We decided we would all take turns staying with her - each of us would take four days and stay there on a revolving basis. This lasted about 7 months. We would clean and cook and make sure she ate right, that she took her medicine on time, that she took the right amount of insulin. The girls would make sure they alternated with the boys - so they could make sure she got bathed. She continued to have falls, bruising her head - her back - her leg - spraining her wrist. It got to the point when I was there, I became terrified when she would get up and walk from one room to the next. I took to holding her with one arm and holding the phone with the other. We got her a life-line system. She wore a pendant around her neck that had a button she could push and they would come over a speaker system and ask if she was alright. If they didn't get an answer, they would go 'into action'. We hired care-givers to come out and help - giving us all a break. That lasted two weeks - she honestly did not feel comfortable with strangers in her home doing things for her - like bathing her or feeding her. Something you should consider before which we didn't realize. Her condition worsened and the doctors imformed us she had developed brittle diabetes which had distroyed her heart. They gave her six months. Tops. Then a young doctor in a neighboring town began to give us hope. He told us that he could 'fix' the problem. There was a new procedure called TMR. Momma would need to have 5 by-pass operations and this procedure called TMR - all in the same operation. There was no guarantee, but he felt it would her relieve some of the pain she was having. At first we were reluctant to agree - the operation was risky as best and sounded 'scary'. TMR involved 'striking' the heart with a laser to create holes in hopes of forming new blood vessels. Then her pain worsened and we all agreed if she wanted this operation, she should have it. It was a nine hours operation. They struck her heart a total of 54 times. Oh, and one thing I feel they forgot to tell us about this operation, though my siblings tell me they did 'mention' it - the operation can cause memory loss. (Sounds like - well you might forget who the President is - wrong!)
There were complications after the first day and they had to take her back to ICU - she ended up being in ICU for a week and a half -during the entire time she was there - she stayed 'knocked-out'. When we got to see her, she was always 'out' and all we could do was sit there and hold her hand. The doctors kept telling us she was still under the anesthetic (sp). Finally, she was well enough to be moved to her own room. From the minute we where allowed to see her and talk to her - we knew something was dreadfully wrong. She looked at my sister June and asked where June was. She told my older Sister to call and let her husband (my Daddy) know he could bring the kids to see her. She repeatedly tried to get out of bed and go into 'her room' - her bedroom at her house. She forgot how to hold a fork, how to drink from a cup, how to walk. She would swear it was 'raining' it her room. She saw fish at the foot of her bed. She'd stare off into the distance and smile at the wall. She tried to get out of bed in the middle of the night and 'forgetting' that she didn't know how to walk - fell and had to be moved back to ICU for a few days. It was the most horrendous thing I had ever been through. To be sitting in a hospital room with your mother and have her look at you with a far away look and calmly tell you that 'you didn't need to stay there with her, you could go visit some of your other patients' to have to 'remind' her that your father was dead and then watch her cry and ask 'when?'.
With hard work and lots of tears, we helped her walk, we helped her learn to hold a fork to feed herself. The doctor kept telling us this was temporary and would go away soon. We just had to give it time. Six weeks later. The doctor tells us, he will release her, but she can not go home. She must go into a nursing home - or we must hire someone to take care of her. She will need round the clock care. She will be on oxygen and we had a long road ahead.
Lord, it was the most painful and gut wrenching decision we children have ever had to make.
We scoured the towns and citys for the 'best' nursing home we could find. The doctors wanted us to take her from the hospital directly to the nursing home. He suggested it was best to not even take her by her home. So, we took her directly to the nursing home. You cannot imagine what it feels like to walk way and 'leave' a parent exactly where you promised you would never 'leave' them.
Four weeks later, she is doing extremely well. Her memory is back for the most part- she still has bad days. The doctors told us she developed a condition known as Sundowners Syndrome - where as the day darkens, remembering things is difficult. She is walking and eating on her own now. And she says she really likes being there. She has a compatible roommate, and they have in the last week moved her from the 'critical care' area to one where she has a little more freedom. I now spend every Monday with her. And honestly, she seems happier than I remember in a long time. We spend the better part of the day together, playing Yahtzee and 'just talking'.
The doctors tell us, after all this - her heart is basically in the same condition as before. They may have extended her life by another 3-4 months.
Oh, and one thing while I am on it - please people, if you have relatives in a nursing home, go see them and spend some time with them. I have met some very dear people while visiting Momma and I know they all look forward to her children visiting as much as she does. What with 6 children, someone is there everyday.
I guess what I am saying is - as one who has gone through that gate - the initial decision to place a parent or loved-one in a nursing home -is the most difficult thing I personally have ever done in my life - but after having done it and lived through it - I would do it again in the same circumstances. I no longer wonder - has she fallen and no one was there to catch her - did she take her meds today - did she give herself the right amount of insulin - is she eating right - if she doesn't feel well, there is a nurse right there. And I actually see her more often than I did before. The nursing home/retirement home, is located closer to me than my siblings and I have a mall space in a building nearby - so when I am headed to the mall - I drop in and spend an hour or so - or stop by for lunch with her.
Sigh..
noteye
A sad Texan once commented "I Wish it would rain, not so much for myself, I have seen rain before. But, for my 10 year old son."
posted on November 5, 2000 08:04:06 AM new
Mybiddness,
You're very welcome, I'm glad I could help. I know what you're going through, and my thoughts and prayers are with you and your family. Please let us know how your father-in-law is doing. It will all work out, but maybe not in a way you had anticipated. Life's like that. All the best.
posted on November 5, 2000 08:52:41 AM newNoteye I can't tell you how much I appreciate your sharing your experience. My heart goes out to you for what you've been through. I'm afraid we'll be facing some very tough decisions soon. My father in law also has the "wobble" and is diabetic. His heart is at half capacity and he is extremely forgetful. So many of his symptoms mirror your moms. When we were visiting him last night he looked straight at me and told me that a parking lot was supposed to be where the building was outside his window. He asked when I was going to go get the bulldozer to move the building. In the next breath he turned to my husband and started discussing his bills, etc. and seemed perfectly alert and normal. His strength is almost nil. Not even enough to feed himself. I'm not even sure why they've let him out of the hospital already.
We've discussed nursing home care and I always end up feeling like the bad guy. I don't think any of the siblings (including my husband) really understands (or accepts) that we may have reached that point. The others are already piling all of the responsibility on my husband. One of them called at 7 a.m. this morning to inform my husband that he needed to take two apples to his dad. This is an hours drive each way. The other one called and said that he'll be tied up all day getting ready to leave town on business. One of the problems is that my husband just accepts all of the responsibility because he wants to be "the good son." I can understand that, but I can also see that the strain on our own family is going to be tremendous.
To tell you how ridiculous this is - my husband had surgery on Friday - the same day that my father-in-law became ill. The day after my husbands surgery the younger brother called him and said that their dad was sick and that my husband needed to go to his house to check on him. I wasn't here or I would have gone. Our families live the same distance to father-in-laws house. Instead of telling my brother-in-law to go himself - my husband went and was the one that ended up calling the ambulance, going to the hospital with his dad, etc.
I suggested to my husband this a.m. that they have a family conference as soon as his other brother gets back in town. Otherwise, I can see where this is going to deteriorate quickly.
Calamity Nice to see you again. 2000 has been a roller coaster ride for us - lots of good peppered with some bad. I've got my seatbelt on!
posted on November 5, 2000 02:50:59 PM new
Thank you.
I would suggest that you do as Meya suggested and have one of you get the Power of Attorney. My older Sister is such for Momma.
What is important here is the welfare of your father-in-law. Is he really getting the best care possible when everyone that is caring for him is arguing or exhausted?
My Mom currently has an infection that they are running tests on - had she been home with all of us taking turns caring for her - I don't know if we would have caught that infection as soon as the nurses at the nursing home did.
What I am trying to say - is you can not do it. Unless you are trained to take care of people in this situation.
You can not make others do their share. You just can't. And if your husbands brothers all know he will 'deal' with it - then they are going to let him deal with it.
I know for my Momma it was past the point of her being at home by herself.
But, it is a tough decision - tears and all. This coming week-end we begin closing her house and selling what she was not able to take to the nursing home for one reason or another.
Good luck and I hope things get smoother for you.
noteye
A sad Texan once commented "I Wish it would rain, not so much for myself, I have seen rain before. But, for my 10 year old son."
