Have you considered hiring an aide for 1 or 2 half days or 1 full day to give you a break? Go shopping, out to lunch, visiting friends, whatever. It would be refreshing for you to have a break. Also I would dismiss the suggestions from the geographically distant relatives. This is your home/life and you welcomed your FIL into it, do what you think is best for him, your family and your financial resources and don't look back or let them lay any guilt on you. It is good you recognize the effort from the one that comes Sat. and as I am sure you are doing mentioning your appreciation periodically would be good.

If he has end stage kidney failure, I doubt that he is going to last two more years. Just go one day at a time and don't fret about tomorrow. It's going to be rough. Start checking to see if he would be eligible for some sort of State Aid such as Medicaid for nursing home care. Find a suitable place so that if he needs more expert nursing care than you can furnish, you won't have to make decisions in a hurry. He may even eligible for Hospice care. Kidney failure is a terminal condition.

Hi Trish
I cared for my mil for over 5 years in our home. Long hard road, but I would do it again (I am sure in my heart that it was the right thing to do).
Just take care of yourself along the way in as many ways as you can.
I had a good friend who came once a week and had lunch and an hour of conversation.
I went Groc. shopping after mid night when she was tucked in bed (she generally stayed put). Often a friend could meet me and have a coke at a drive-thru place and visit with me.
And one of the nicest things I did for myself was to buy a baby tv monitor for the bedroom and the bathroom. I could give her her privacy (she was not aware of the camera) and as long as she was not in trouble I let her do things for herself, but often I could see she was having problems and then I would step in. At night I could see if she was getting out of bed and be there so she did not fall. You learn to sleep with one eye open.
And the other thing I did was give myself, each week, a 4 hour period of time that was just mine. I had a aid come in and Grandma was hers for the 4 hours. She also did laundry for me, not because that was her job, but she wanted to do it. People would say, what do you do in that 4 hours-My reply was if I can't find someone to have lunch with, or something to do, I will stand in the middle of the road and scream, but it is MY TIME.
Good Luck
Connie
ps--come to this place as often as you need-it was a big part of my sanity.

Thanks Connie -

I had thought of a traditional baby monitor, but hadn't thought of the camera kind. That may be an important thing to have down the road. DH leaves the house for work at 5:30 a.m., so his sleep needs to be protected. I think if he knew that we had an easy way to see if Dad is up at night then he could sleep soundly without having to have one eye open. Does the baby monitor do sound also or just camera? Does it have its own tv monitor or do you hook it up to your TV? We don't have a tv in our bedroom.

Setting up someone to come in once a week is a must I know -I just need to start calling agencies and get it moving. I think the charge around here is $18- $20/hr... so I'd better have actual things lined up to do in those hours or I'll feel awful. I have gotten so little done (everyday household/family tasks and other spring projects like cleaning the basement etc.) that I'd probably be happy to just have 3 or 4 hours carved out of the week to just do that stuff and try to get caught up while someone keeps an eye on him.

? The visiting nurse and home health aids term will finish up in 8 weeks. I can't imagine not needing them anymore. I guess at that point we keep them on and pay privately.

Other coping tips anyone?

I admire your attitude in this difficult situation. I hope your FIL realizes what a loving, caring woman his son married. Heres my two cents.
1. Talk to the local elder care services people in your area. Most counties have someone that coordinates such things. They are enormously helpful in finding what services your FIL might be eligible for.
2. Although I know that this is the last thing you want to think about, selling his house now would make things much easier. That way, he would have the financial resources to pay for his own care.
3. Talk to an attorney that specializes in eldercare. If you havenÂt already, get Power of Attorney, both medical and otherwise. It sounds as if your family has spent $150K of your own money caring for your FIL. If your husband has six siblings and/or your FIL has any assets, your family should not be paying for his care by yourselves. I guarantee that when your FIL passes, the siblings who have not contributed money or time will expect an equal share of his estate. An eldercare attorney can help you find a more equitable way to deal with this. Do not be bashful about getting reimbursed for reasonable expenses, including sitters. Include the SIL who visits often in this if you can.
4. Make sure that your FILÂs affairs are in order. Will, living will, DNR orders if you wish, arrangements for when he passes. This is especially important with the large number of children he has. The more people are involved, the more likely disagreements are going to be.
5. Talk to your FILÂs doctors about what to expect, and when hospice would be appropriate. You may find that the hospice nurses could start when the rehab nurses leave.
6. Find a support for caregivers in your area. Forums like this are great, but we can only give virtual hugs.
7. Yes, a dark cloud has descended over your house. A 93 year old man in poor health who is unhappy with his circumstances has moved in. Get him out of the house whenever you can. Take him for drives, to your sonÂs games, whatever. Being cooped up in the house will make him (and you) even more depressed. If you donÂt have a wheelchair, get one.
8. This first week is especially difficult as everyone adjusts. Keep in mind that you invited him to become a part of your family, not rule it like a tyrant. People who have lost control of their lives sometimes try to control anything they can, and that may mean your household and the happiness of your family. Do not give him this power. If he doesnÂt have dementia, he should be expected to act like a reasonable adult. You may need to set some ground rules. His happiness and well being is not more important that yours, your husbandÂs, or your sonÂs.

Hi Trish
Here is what our monitor looked like (not sure this is the same brand, but similar)
http://www.amazon.com/exec/obidos/tg/detail/-/B00004BZGD/104-9149306-9160713?v=glance
We were also told by others, stay away from the colored set, ours was just black and white. It does have night vision, so you can see them in the dark.
We paid around $125 for ours (a few years ago) and like it so much we bought a second one, so we did not have to keep moving the camera. It has sound and vision.
It was by far one of the most important things I had that helped relieve my stress from worrying about what was going on in a room when I had to leave for a few min (I could actually sit in the bathroom and do what I needed to do because I knew she was staying put and she was ok---before we got it, I was always rushing to make sure I got back before she tried to get up and do something I knew she would fall from.)
One other thing that I did-she used a walker, so at night I hung the big string of large christmas bells on her walker-this sound would wake me when she moved her walker into position to get up, don't remember who told me to do this but it was helpful.
Connie

Scotland and Connie - thank you for these very concrete and helpful suggestions.

Thankfully, we have already done much of the legal stuff. I had to really push DH to get to the lawyer and make sure that there is a directive to reimburse us for our costs (not every little expense of course...just the big things like two years of live-in care when MIL was living and other biggies like real-estate taxes for the past several years, MIL's funeral etc.) There are all of those family dynamics that come into play and everyone has their guilt issues. DH is the only one of the lot who actually has his $#%^ together and I think he feels guilty about that on some level, thus he has been reluctant to do anything as POA that would make anyone think that he was being self-serving or benefiting from his position. You know big families!

Thank you both so much. Today I just really needed a bit of encouragement. Sometimes he really just sends me over the edge. He has only lived here for a week and a half, but I have been caring for him for many years before this and I have been hit by the realization that having him here has changed our lives and not as much for the better as I had envisioned. I pictured him playing checkers with my son in the evenings and telling him stories etc. and that this will enrich us all, but as soon as dinner is over he wants to go to bed and the rest of the day he is pretty sullen and unenthusiastic. And COLD all the time. His bedroom is set at 78 degrees. Our family room/kitchen is currently at 76 degrees. DH, DS and I will soon be in tank tops and shorts. I know he can't help it.

Oh my, I don't want to resent him being here, but I can see that there will be days when I feel that way. I feel badly about that already. Already there are things he is doing that bug the heck out of me. I hate the way he chews with his mouth open. I hate the way he rocks back and forth in his wheelchair when I am trying to engage him in conversation. He is somewhat passive/aggresive. He complains of having nothing to do but rejects every idea I have, including going for a ride to the ocean, visiting a friend he made at the nursing home he was in, and on and on.

I am so sorry to vent. It is hard to say these things to DH because I don't want him to think that I can't do this. I know I CAN... it is just getting used to life the way it is now.

Thank you for being there! I will look into that monitor thingie right now.

Hugs.
trish

I'm going to bring up hospice again...I think it varies from state to state...sounds as tho he has an 'incurable' problem. My Mom has very advanced MS, is 89 and has had hospice for two years.

For her, they provide an aide who gives shower 3 times a week, they come change her catheter every one to two weeks, they have a social worker come once a month, a chaplain once a month, and I think the RN comes once a month. There is absolutely no cost to my Dad (good thing, he is paying for help 24/7)....you'll need the Dr. to do the paperwork to get him on it. Medicare reimburses the hospice agency.

They also provide ALL of her medications.

Carolyn

Thanks Carolyn,

Does your mom live with you? I can see where Hospice would come into play down the road, but I didn't think they did that until things were really nearing the end. There is MS in DH's family and we have a very close friend with it too. I know how awful it can be.

Other than being moody and unenthusiastic, FIL is in no pain or even discomfort right now. NONE. He can eat anything and does. (complains about it first, then cleans his plate). The zillion meds he is on are keeping him operating just fine and he has been quite stable for several weeks now. You would never know that his kidneys are not functioning well. His renal doc doesn't even have him scheduled to see him again until mid-May, so the doc evidently is pleased with his baseline. This doc is the one who said he had "end stage kidney failure" - but that must be an awfully long continuum. Can someone go years with that?

His only issue is that he has lost the strength in his legs and now needs a wheelchair. With the wheelchair, we can take him anywhere and get him out and doing things. But he poo poos everything. We could go to restaurants for lunch or to museums or to visit friends. Nothing doing.

It is supposed to be near 70 today, so I am hoping to get him out in the fresh air for a wheel down the lane and back. Maybe I won't ask, I will just do! He has an appointment for an injection at the hospital at 11:00, so maybe I can parlay that into some kind of activity. Then he can come home and nap. The town has a band concert this evening that we think he would enjoy if we can get him to go.

I found that not asking before we went somewhere was the key to success. My mom was embarrassed by both her wheelchair and her catheter. She didnt want to leave the house. So I just stopped asking. Id tell her that we were just going for a little ride to see the spring flowers, and next thing she knew, she was in the middle of Walmart. It did a lot to raise her spirits. She was always more comfortable if my husband came with us because she was paralyzed and more confident of his abilities to get her in and out of the wheelchair. That, and she thought he hung the moon.

Dont ask him what he wants to do until he gets his mind in a better state. Just tell him, "Gosh, were supposed to be at Freds house in 15 minutes! Wed better get going! Would you carry this for me?" I wish someone would toss me in a car and force me to enjoy the gorgeous weather today.

Hi and welcome! i care for Al all by myself with no help from his family members, only our 17 yr old dd and almost 23 yr old ds. as i write this i will describe myself as a 50 yr old burnt out woman! i am so tired all the time lately that it is a chore just to make meals. so if you can get help even for 1/2 an hour take it! we don't live in a large house infact it's a tiny,tiny dollhouse about 850 sq. ft. and i can no longer even keep it clean! i try to take time for myself like when Al naps, like reading, knitting or quilting. i am also on paxil probably for depression but also for migranes. we do try to find humour in this illness he has and joke about alot of things -- like you somedays are like walking on egg shells, plus living in the great white north doesn't help things at all, it seems like you are inside for about 5 months straight. it is a long road and i wish i would have made my dh's family help out more, infact se haven't seen dh's sister since their mothers funeral. also keep as much normalacy with your children if you do still have them at home, our dd can't remember when her dad wasn't bedridden so she doesn't remember skating and playing baseball when he coached her, but we do. i could probably go on for days and days here, but the best advice i got here is take time for you! enjoy your day because you deserve it, --hey it's raining here!, but snow tomorrow!!! debbie

thanks ladies - I don't want to just go shoving him into the car to go places, but it seems that you are confirming what I have been thinking.... that it is really just peachy wherever they are as long as they don't have to do very much to get there!

debbie - I know how you feel about not being able to keep up. I have been working on the same project on my kitchen table all week, and feel as though I will never be able to sit down and actually get it done. With today's two pant-loads of diarrhea (thank God for Depends!) and resulting clean-up and emergency laundry load - my morning is gone. I need to get the car inspected before 4/1 so that is what I will go do now that FIL is sleeping. As far as cleaning your house... well, you just do what you can do. And this is one area where the children have an obligation to you to not add to the mess, and in fact, do some concrete things to keep things from getting out of hand. There is a website called flylady.net that I use from time to time when I feel as though I can't see the forest for the trees in my home. The site is wonderful and helps you do things in little 15 minute segments that eventually get everything back in control. She will even send you reminder e-mails and little things to do (including taking care of yourself and a bubble bath!) I had good housecleaning habits before FIL moved in, and I guess it will just be a process of moving things around so I can still keep on top of the hot spots and still meet his needs during the day. It is a lot like having a new baby in the house! debbie - when you say great white north, do you mean the REAL Great White North as in Canada? I have wonderful memories of traveling through Canada in the 80s - what lovely places and people.
trish

Trish, yes the Great White North actually about 4 hours from duluth, Minnesota we live on the shores of lake superior, they actually had an ice breaker come through last week and we had our first ship come through! i actually used to visit flylady before i found this site, and i really did try, but actually i'd rather be doing other things than cleaning! you can see where my priorities are - lol, before you could eat off the floor, but now, i figure,well it will be there tomorrow. i must agree about with depends, which Al has been using for quiet sometime now and the bedding being washed. since we still have snow and it is cold out--well notday it's about 38 right now, i only used to have to worry when he'd go to watch our son play hockey, but i'd almost have to force him to go out in the car, he has to transfer on a "transfer board" and slide into the car, he also said he doesn't feel comfortable with people staring at him, and he doesn't want to scare little kids (so this is where the lap blanket came in and me starting to quilt, i made him all kinds of them, eg. whatever sport son was doing at the time). well it's after 3, and dd has this illness that it seems like the whole city has, and ds wants me to pick him up at work so he can come home for supper, and i have to start supper in order for it to be ready by 6 when we'll get home, it's still raining here and it smells terrible. also we use the i made it through morning, i made it through the afternoon and i made it through the evening, type of schedule. So everyone enjoy what's left of the afternoon! debbie

Hang in there Debbie. Sounds like my day was a piece of cake compared with yours. We at least had sunshine and despite the two pants-full of pooo, (FIL, not me!! LOL!!) my day was really OK. DS has a band concert tonight and let me know at 4:00 that he had no working reeds and his G was flat. I about flattened him! So off to the music store to get reeds. Nothing can be done about the flat G unless his director can fix it quickly.

It is warm enough here tonight to grill out. So that is what we are having. Then hopefully I can cajole FIL to join us for a little bit of the concert. DS also plays hockey like yours. All hockey, all the time. We are in playoffs and also an extra tournament, so there will be extra hockey over the next two weeks. Love to watch that kid skate though... it is a lovely thing to watch.
Cheers all -
Trish

Mom doesn't live with me (I work fulltime in my job field) - she lives in the house she and Dad bought 15 years ago that was more 'wheel-chair' friendly than their previous house they'd lived in for 50 years.

She's 89, he's 93. She's had MS since her early 40's but of course it couldn't be firmly diagnosed at that time (and there was no treatment for it then either)

Our hospice folks have described hospice care as 'end of life care'....in fact, they have offered to sign Dad up (high BP, high chlosterol, type 2 diabetes)....after all, he is 93 and probably won't live more than another 5 years (although he did have one Aunt make it past 100)

That is how it is in Texas - it may vary in your state - I always thought it was only for the 'last six months of life' however, I was told that was inaccurate here.....that one must have 'an incurable disease'....whidh MS is....there is no cure, only treatment to slow down the progression.

They do have live in help - two different ladies - 24/7....each one works one week on, one week off.

Carolyn

You have to have a schedule and you have to adhere to it as best you're able. Sounds really draconian, but it isn't. It's the schedule that will keep an elderly person on course (esp. if they are losing mental capability), allow you to accomplish that which you must do, AND schedule help/respite.

Help/respite. You must have this. Trust me on this. I have had Mum with me for nearly 3 years now. For fully 2 of them I did it alone. After her stroke I knew she was no longer able to bathe alone. I hired a woman to come in thrice weekly and assist her. Smartest thing I've done in a long time! I don't have to do it, it accords Mum some privacy, and she has another person with whom to interact. I calmly told my brother he had to step up to the plate and do some caregiving, too. It wasn't fair that I gave up my former life and he had to give up nothing. He now takes her for a month at a time; usually every 2-3 months. I'm OK with that arrangement; but know if he scheduled a "bath lady" it would be easier for him to take her more frequently.

Try to incorporate them into your daily errands. I pack Mum into the car (along with the dog) and she "rides shotgun". She is perfectly happy to go for a ride, wait in the car in the sunshine while I dash into one place or another... sometimes she wants to go in, too... so I usually allot enough time. If I haven't, I simply say, "No" and explain why. I will grab her a "treat" if she must wait in the car. I make sure we get out to do something "fun" at the next opportunity. It takes practice to venture out with an elderly, infirm person. You will learn the places that easy to access, have comfortable bathrooms, have help that is willing to move slowly and patiently with the elderly. Mum goes every month for a shampoo/haircut/manicure. The woman is a delight; warm, patient, and gives Mum her undivided attention. We are "regulars" at several establishments BECAUSE they are willing to make time for a slow, old woman.

It's hard work; not always fun. I miss my freedom terribly, if you want to know the truth. But I can do this and feel it is important for me to do it. She ain't gonna live forever, afterall.

(Hi Connie!)

Hi Chelone,
Glad to see you are still around. Very glad you got your brother to step up and help you.
Tomorrow would have been my mil's 97th birthday. May she rest in peace.

Hubby and I are recovering from this terrible flu-anyone else had it. I have never considered having a flu shot--but next year I think I will. It has been really rough.
Connie

Hi Chelone, great to hear from you too!!! And Connie, i miss you alot! tons of folks here here have that flu, infact most of the seniors homes are closed to visitors,transfers, and discharges, so it doesn't stop at the boarder does it, i know i feel that i am ocd was soon as i come in the house from being outside i wash my hands right away, but there was a news article that said if you use those anti-bact. soaps etc. it can affect your immune system. so it's just soap and water here or just wear a thin pair of leather gloves out. it's going to be a tropical day here in the Bay today - they say about 48 or so after a nite of freezing rain, but we still have alot of snow to get rid of. enjoy your day and it was great seeing you 2 post, i think of you often, but Al's schedule is so weird now, he sleeps all day and is up al nite, and is in alot of pain. debbie

Hello everyone,
You are really special people to take such good care of your loved ones.

Twiz, I wanted to repeat the advice to check on hospice. It helped my mother tremendously. Please check with your father's doctor to see if he is eligible. It certainly won't help to check on it.

Good luck to all.

hey trish,

i know it's hard and time consuming. i actually had a similar situation with my mother. She was living with me and i felt that i needed to be involved with everything going on at all times. but then i felt like i was going crazy. I needed time for me, even if it was a long shopping trip and not worrying that i needed to get back asap.

I wasn't sure if I should place her somewhere and money was a bit of an issue. However, I found many different alternativies on the web! I currently use this, I found this website when I was researching what I should do. It was www.quietcare.com, maybe you should look into it and see if it would work for your situation.

If you don't need the camera, baby monitors are fantastic. Portable - battery operated and plug in.
If you have a wanderer, hang wind chimes by the doors - great inexpensive alert system. Also a soft and gentle way to wake them up from a deep sleep.
Lamps that light by touch.
Add a sink type sprayer (modified) from the bathtub showerhead that can reach the toilet - helps in cleanup.
Baby wipes, baby pads --- look for many items in the baby section of department stores. Wet proof baby pads are 2 for $10.00. At a medical supply shop, $30.00 for 1.
Top slide locks on exit doors.
Diaper pails if they use Depends.
Brightly colored plastic drinking glasses if eye sight is a problem.
White dinner plates so they can see their food better.
A heated throw blanket for those that are constantly cold - Walgeen's used to sell them as a seasonal item. Pick up a couple at a time.
Line their favorite chair with a full size heated blanket during cooler months.
Line their favorite chair with plastic and then a cover of some sort for protection.
Sneak liver into soups for extra iron.
Be consistent if they have dementia.
Train (repetitively) those with dementia on new *procedures* so they will be comfortable with it later down the road. Example: use of diapers, bathing techniques, food service, etc.
Learn "fiblets" - white lies that minimize stress or embarrassment.
Learn how to divert bad behaviour - have a mental list of diversions ready at all times.
Remove all rugs or items they could slip on.
Install grab bars and raised toilets - anything to make their life easier and safer.
Make a medicine chart - one that shows the medications, time to take, etc. Then list each day of the week and a time slot daily that can be easily checked off as adminstered. Great when you are unavailable and someone else needs to administer meds.
Hire extra help for breaks.
Look into senior day care programs.
Be forgiving - they are generally just as frustrated as you are.

Thanks Lisa -

It has been 3 months now since my first post. Interestingly, FIL is healthier than EVER! Grumpy still and still doing some passive/aggressive things but as for the "end stage kidney failure" diagnosed by his doctor.... I don't believe he has such a thing. He will surely live for many years it seems. Kidney doc doesn't need to see him again for 6 months after the May appointment, so he is clearly not alarmed by FIL's condition anymore. DH and I are certain he will outlive us now.

It is emotionally trying to have this negative force in our home - just his demeanor. He is a genuinely nice person, just negative about a lot of things. He is sharp as a tack. No Alzheimer's or any sort of dementia at all. We are coping as best we can. I really don't know if I will be able to manage if this goes on for years. My son is 11 and entering his teen years and I can sense from him how our new lifestyle is affecting him. I am simply restricted by how long I can be away from home, so taking DS anyplace that takes more than an hour or two hasn't happened very often lately. DH and I don't get out to dinner but for quick bites somewhere because the catheter needs to be switched over at bedtime, which is usually between 8 and 8:30. Last time we tried to go out, we were about 10 minutes late in getting home and FIL didn't want to wait so he tried to do the catheter himself.... what a disaster. Pee all over the floor, pee all over the bed. He could have just waited a few minutes, but decided to make his point... which he did. So basically it means we can't go out to dinner as a couple unless we go real early, eat fast and get home quick. Not exactly quality time with DH.

It is all causing a strain, but what else can we do?

Thank you all for your very practical suggestions. I have used many of them already.

Thanks -

At some point, you need to seriously assess your ability to have your FIL in your home. Nowhere is it written that you have to do have him in your home. It's time to look at assisted living facilities, and see what you can find. You don't have to move him into one tomorrow, but you need to see what's out there. For your own peace of mind.