I am new to this, so i thought i would start by venting what I'm going thru for the last 2 years. im 30 years old and my fiancé and i have been together almost 7 years (getting married may 2014). We are both self employed, running a business together and i work primarily from home. My Fiances dad is now 87 years old and has been living with us for a few years. His health was great until about 2 years ago when he was diagnosed with congestive heart failure and afib. From there his health has been rapidly declining, and he is on more meds than ever. This is a guy who still works (although we had to close down his office about 5 months ago so he can work from home as well). I knew that once he was home 24/7 things would change. He is home ALL THE TIME, and we went from having a decent amount of privacy to almost none!! He watches tv all day and its sooo loud you can hear it thru the whole house. He wont wear the headphones and thinks he hears just fine. I dont even work in my office anymore because i cant concentrate. Recently he had laser surgery on his prostate because we found out it was blocking the urine from draining from his bladder. Th surgery didnt work so now he has to "self cath" 4 times a day becuase his bladder "died". The doctor says it is less likely to get an infection this way as opposed to a permanent catheter. I agree, but now there is always piss all over the guest bathroom all the time, and he isn't a really clean person to begin with. I am in there scrubbing almost every day. Feces too becuz he cant seem to get to the toilet quick enough. He gets a urinarytract infection at least once a month which often means a trip to the ER since it always seems to fall on a weekend. I have always taken him to all his doc appts and i lay out his meds every week. I am good at it and very organized. My fiancé has taken the lead in running the business, but i still have a lot of responsibilities with our business on top of caring for his dad. I cant just walk away from work and we cant afford to hire help with our business. At 30 years old i feel like i am meant to do something more than this. I like to work! I like to be independent. We are currently renting a 4 bedroom house, we need a bedroom for his dad, one for his 13 year old daughter which is with us half the time, an office and of course our bedroom. We are getting married in 5 months and want to start a family. I dont even have room for a baby let alone the time. I feel like i am caring for a child right now. I am always waiting for something to go wrong with him because once he gets better something else always happens. For example, he had yet another UTI last month that almost killed him. He went into septic shock and had to be hospitalized for a week. He is constantly having problems self cathing and its obviously causing these frequent infections. Its quite a production for someone to insert a catheter 4 times a day, but an 87 year old man who is frail and looses his balance is a huge challenge. My relationship is definitely suffering, and lately my fiancé and i feel like prisoners in our own home. He craves socialization but WILL NOT take up a hobby or go to a senior center to meet people. So he is always trying to talk our ears off about this or that, but our schedules Are always so hectic, so its tough to just sit there and let him finish. Then when i tell him "sorry i have to be somewhere, can we talk later?" He gets really annoyed and then things just get awkward. He also cant hear anything at all so conversations are extremely difficult. I know i must sound ridiculous all my complaining. I see a lot of people on here that have worse situations than mine, and i feel for all of you. I am grateful i am not in the advanced stages of caregiving yet, but i also feel like i am seeing what is yet to come for us. The way things are going, i just know im gonna try to have a baby or two and something is going to go wrong with my father in law. We cant leave for very long as it is right now. i dont even know what we are going to do with him when we go on our honeymoon!!! Every time we leave now, he burns something on the stove, or cuts himself, or falls. Like i said, im young and so is my fiancé. He just has an older father. I wasn't expecting to have to experience this kind if thing until i was much older. I am super depressed and feel like i am always waiting for the other shoe to drop. I dont even see my friends anymore. Plus now we have to worry about saving money for when the time comes to get a higher level of care for him. We have just started making a life for ourselves!!!. I am so resentful that this will affect the money we need to start a family!!! I am such a terrible person, i wish there was a solution.
Practically, how about getting some Depends for his fecal incontinence? I bet he would be less embarrassed if he could just remove the soiled one and put it into a plastic bag, and then no gross poop-decorated bathroom for you to clean. At least to me, urine is a lot less disgusting than poop.
How about putting him into an AL for a week so you two can have a vacation? Try that for your honeymoon. He might discover he likes it!
He or Medicaid should be paying for most of his expenses. You two should only be paying for extras.
Good luck!
Good luck to you and let us know what you work out,
Caregiving is not for everyone. Do not feel bad if it isn't for you. He is not YOUR responsibility. He is your fiance's responsibility. If he is not willing to take care of him, then he needs to find an assisted living facility nearby. That may sound harsh, but it is fact. It is hard enough to take care of a person you are close to, darned near impossible to care for someone you with whom you have no connection.
Sending positive energy your way. Good luck!
We have been going to take my MIL in to see someone at VA to find out what she could get (max for her is about $1100 a month widow's benefit - but the vet himself would get more. Problem is - you have to go and sit and wait your turn at the VA office - they won't even make appointments and around here - they are only there one day a month or something crazy like that. Needless to say - we have sort of decided to just try for Medicaid when the time comes. Probably this Spring or Summer.
It is too bad older ones don't think of what the burden of their care does to their families - but they can't seem to think past their fear of going to a NH.
As their advocates - we - their family - when we have reached the end of our ropes - must then make certain that we have researched and chosen the best possible home for them and then visit often to make sure they are cared for properly and engaged mentally and physically as much as possible.
Sadly, many today just live too long nowadays - we long outlive our health and without good health - well life is just plain hard. It is not only hard for the older one but extremely hard for their care givers -
I remember reading an article by the Anthropologist Margaret Mead in Look Magazine - when was in my teens (many years ago now) and she said she never feared growing old because the older people she knew were physically active and engaged in life - and INDEPENDENT. Few spent their final days hanging out of a wheel chair wearing a bib in an old folks home.
But now, thanks to modern medicine, we can be propped up almost indefinitely - and as John Mellencamp aptly said "Long after the thrill of livin' is gone."
You two have just begun to live your life. You are far too young to be a part of the 'sandwich generation' and I do not believe we owe lives and happiness to our aging parents. We owe them respect, care, and love. We can give them these things even if they are not living under our roof.
We too started out with my MIL living independently and while she was independent things went smoothly. But the years take their toll - on everyone involved. My health has taken a turn and so has hers. She has what we call 'mini crises' 3-4 times a year - ER visits, hospitalizations, rehabilitation, more and more meds. We want to move her into Assisted Living BEFORE she gets to the point that they will not accept her due to her poor health. So, we put her on the list and she will move as soon as an apartment is available. It is a beautiful facility that accepts Medicaid. She has taken a tour. We know she will adjust and be ok.
So, look into other arrangements for your FIL - he will adjust and will be fine if you two continue to be part of his life.
Just my two cents. The best to you all. Hoping 2014 looks UP for you. :0)
Please don't feel guilty we all do from time to time were all suppose to be so selfish when there are others in need. Yes to a point but past that point and well here we find ourselves and thank goodness because your safe here talking to people who are dealing with many like changes in life. It's complicated! I'm dealing with 2 parents 86 and 88 with dementia that are not easy people to deal with, the legal system, social workers, my father's crazy sisters I call the Killer Ants it's not easy! Today I really wished all it took was a bag of Red Ant pellets pored on top of the three Killer Ants, to remove my fathers sisters incessant continuous sting, I mean that in the nicest way of course LOL!
Again No your not a bad person for feeling the way you do trust me! I've been on this site almost everyday with a new more ridiculous outrageous drama from the insanity of dealing with end of life issues. I'm in my late 50's very late, I'm praying I WANT MY LIFE BACK TOO! God love ya! Keep coming back, there are some truly wonderful folks on these boards we really do understand and care!
'B O N K E R S!' That's me :0) And our charges haven't a clue :0) My MIL told me You've got it MADE!!! I laugh about that now - but at the time I didn't see any humor in it :0)