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Bad News, Good News, Bad News, Good News-
January, 5, 2017
Good News. I am a fighter and I am a survivor. My goal is to get the most important paperwork together before my hernia surgery, so it is ready for my son, in case of the very, very worse case scenario. This has been on my to-do list for a while, but there is always so much to do that it does not always get done.
What an understatement!!! I can't come up with different wording, but you are miles ahead of the fighters and survivors.
I wish several of us lived in your area so we could come and help you for a few weeks after your surgery. Since we're limited to what we can do long distance and anonymously, I'll continue to send prayers and positive thoughts your way.
You cannot keep caring for your husband if you are not healthy. You are not healthy because you are too stressed out caring for your husband.
This is a sign. Please read it.
It's time.
Quote:
Germaine, please take these health issues as the dire warning that they are. You are over extended, way over extended. I recognize you. You will never put yourself first.
I believe it is time to have your husband cared for in a facility for permanence. I know you do not wish do this. Please discuss this with yourself. You can not physically and mentally take this on any longer. Please give yourself permission.
Germaine, I totally agree with convextech and historyfan - your body is telling you that you cannot continue along this trajectory.
It's my experience that when we keep pushing beyond what we have the strength for, our bodies will force us to stop.
Good grief, I just got over extended for about two months during my dad's final illness, death, and then funeral and moving my mom into a facility, and I came down with the worst case of bronchitis and laryngitis ever. I had to literally go to bed for a week, and then after that though I felt better, I still sounded so awful that people had mercy on me and I ended up getting additional, needed rest.
And that wasn't after YEARS of stress like you've been under.
Germaine, get this - we are all expendable. You too. If something happened to you, your husband would not end up living in the street. You need to think about how to handle all this with you LESS IN THE PICTURE. What if you simply could not take care of him? That may be a reality, so you may as well think about it now. What would happen? You need to meet with a social worker via his medical care team ASAP.
You also need to have a family conference and let your family know that you just cannot do all of this. EVERYONE is going to have to kick in to help both of you. Your son, your daughter, siblings, you name it. I can't remember if you or your husband have siblings but they need to be involved if that's the case.
What really needs to happen is your husband needs to be moved into a facility so you do not have the crushing responsibility of taking care of him 24/7. The little breaks you're getting here and there - two hours here, four hours there - those aren't enough. They still entail your involvement also. No. You cannot continue this pace. LISTEN TO YOUR BODY.
I'll tell you what's another likely scenario and an even worse one - BOTH of you needing urgent, daily care. Then what will your family do? I'm including your son and daughter in this mix.
The ironic thing is this - while you are killing yourself trying to handle everything so your family won't have to do more, you are inadvertently creating a situation which will probably eventually force them to be reactive in an emergency, and possibly truly uproot their lives and live in chaos and great stress. I know that is the last thing you want to do to your family. I know that is not your intention.
I think they need to hear this as well. You would be asking them now to help you proactively to head off a worse situation in the near future.
Germaine, I totally agree with convextech and historyfan - your body is telling you that you cannot continue along this trajectory.
It's my experience that when we keep pushing beyond what we have the strength for, our bodies will force us to stop.
Good grief, I just got over extended for about two months during my dad's final illness, death, and then funeral and moving my mom into a facility, and I came down with the worst case of bronchitis and laryngitis ever. I had to literally go to bed for a week, and then after that though I felt better, I still sounded so awful that people had mercy on me and I ended up getting additional, needed rest.
And that wasn't after YEARS of stress like you've been under.
Germaine, get this - we are all expendable. You too. If something happened to you, your husband would not end up living in the street. You need to think about how to handle all this with you LESS IN THE PICTURE. What if you simply could not take care of him? That may be a reality, so you may as well think about it now. What would happen? You need to meet with a social worker via his medical care team ASAP.
You also need to have a family conference and let your family know that you just cannot do all of this. EVERYONE is going to have to kick in to help both of you. Your son, your daughter, siblings, you name it. I can't remember if you or your husband have siblings but they need to be involved if that's the case.
What really needs to happen is your husband needs to be moved into a facility so you do not have the crushing responsibility of taking care of him 24/7. The little breaks you're getting here and there - two hours here, four hours there - those aren't enough. They still entail your involvement also. No. You cannot continue this pace. LISTEN TO YOUR BODY.
I'll tell you what's another likely scenario and an even worse one - BOTH of you needing urgent, daily care. Then what will your family do? I'm including your son and daughter in this mix.
The ironic thing is this - while you are killing yourself trying to handle everything so your family won't have to do more, you are inadvertently creating a situation which will probably eventually force them to be reactive in an emergency, and possibly truly uproot their lives and live in chaos and great stress. I know that is the last thing you want to do to your family. I know that is not your intention.
I think they need to hear this as well. You would be asking them now to help you proactively to head off a worse situation in the near future.
I certainly hope your medical conditions are easily resolved.
As far as what is best for you and your husband (as far as whether or not you should be looking at a facility this early) - I don't presume to know.
For everyone that is suggesting it is time that Germaine put her husband in a facility, I understand that you are concerned for her physical health, but having watched a spouse wither away caring for their institutionalized spouse - it is really not the one size fits all fix often suggested.
Often, putting a person in a nursing home means the non institutionalized spouse spends 8+ hours a day at the institution, watching/supervising/making sure their spouse gets proper care. (No different than putting a mentally vulnerable parent in a nursing home, but even more difficult because while you didn't "pick" your parents, you did in fact pick your spouse which makes it an even potentially more emotionally fraught decision)
Germaine - I hope that your husband qualifies for some of these new programs you've found out about, and that whatever you decide, those programs are able to provide some help to provide you some respite.
Just a heads' up and not meaning to argue but I personally wasn't talking about Germaine putting her husband into a nursing home. There are lots of different types of structures out there.
Let me tell a story - a recent one in fact. True story.
My father in law was mentally sharp but he had some serious health issues, which he hid as much as possible from the rest of the family. He was extremely private, and extremely protective of his wife (my MIL who had Alzheimer's and Parkinsons) and his belongings, and extremely competent back in the day, so when his own health and abilities began to slide, he didn't tell anyone. In fact, he hunkered down and became more determined to handle everything on his own - to push through, persevere, take care of his own business and his own wife, etc. He didn't want to ask for help, and to be honest, part of that was because accepting help would entail losing some control over the situation. Now, not that he was a control freak, but he felt like no one would take care of his wife and his home and his money as well as he could, so he just wasn't going to delegate.
Well, guess what - one day he had a heart attack and ended up in the hospital needing a quadruple bypass. He also had COPD (which he had never told anyone about) and come to find out he had a myriad of other smaller but still serious health issues.
To top that off, the cat was out of the bag now. With him laying in a hospital bed and other people HAVING to step in, the reality of just how sick he was, and just how incapacitated his wife was, hit everyone.
Now all of a sudden, all of us who had been BEGGING them for at least five years to 1) move into town and into a more convenient type of living situation such as independent living and 2) set up someone trustworthy as POA - someone NOT his wife who was unable to do it - well all of us had to scramble. Now - we all had busy lives and careers and kids in college, all that good stuff. But suddenly - we had a crisis. And we had to make do with what we had, which wasn't much. Well, it was a LOT but we didn't have the tools. We had to start from scratch, and the first thing we had to tackle was the issue of Mom. She could not stay by herself even a night. Even a few hours. Did we know that beforehand? No, because he hid that from us. He hid the seriousness of their situation from us because he didn't want to ask for help - or relinquish control. Now suddenly, being proactive and planful was out the window and everyone was in a state of emergency.
Believe me, that's WAY less convenient and much harder than if he'd "come clean" with us months or years before and set things in place to make such a situation easier.
It was a freaking disaster for all involved. The only good thing i can say about it is that we were able to get guardianship of my MIL and at least move her to a safe facility near us. That was less than ideal because he was an hour away in another hospital, but it was the best we could do at the time.
It would have been so much better if my husband or brother had simply had a POA and could do things such as banking, taking care of their mother, etc. We could have already vetted a lot of facilities in fact, and wouldn't have had to do that in a panic with limited options, trying to move money around or simply pay out of pocket and just hope one day to be reimbursed. What a mess that all was.
My husband had to take off work - which cost us thousands and thousands of dollars because he is self employed.
Meanwhile,we had to have my father in law, in critical condition, served with papers about the guardianship, and we weren't even sure he could understand it all. But that was the law - he was alive so he had to be served. Can you even imagine?
My point is not to talk about me though - it's to illustrate that things ARE going to come to a head. As my fortune cookie recently reminded me, "If you don't have a plan for your life, someone else will," and that is the dang truth.
Germaine - whatever the situation and answers are, the simple truth is that things are not going to continue as they have been the past year or so. Your husband is getting worse, his needs are getting more pronounced, and you are getting older - and sicker. Something is going to give - you just don't know when. But you cannot do all this yourself. You simply cannot.
A few weeks before my FIL passed away, he was STILL in denial, saying when we'd try to talk with him about helping us help him, "Don't you worry about a thing. I'm going to lick all this and I'm going to get back home and take care of all this myself. Just don't you worry."
I certainly hope your medical conditions are easily resolved.
As far as what is best for you and your husband (as far as whether or not you should be looking at a facility this early) - I don't presume to know.
For everyone that is suggesting it is time that Germaine put her husband in a facility, I understand that you are concerned for her physical health, but having watched a spouse wither away caring for their institutionalized spouse - it is really not the one size fits all fix often suggested.
Often, putting a person in a nursing home means the non institutionalized spouse spends 8+ hours a day at the institution, watching/supervising/making sure their spouse gets proper care. (No different than putting a mentally vulnerable parent in a nursing home, but even more difficult because while you didn't "pick" your parents, you did in fact pick your spouse which makes it an even potentially more emotionally fraught decision)
Germaine - I hope that your husband qualifies for some of these new programs you've found out about, and that whatever you decide, those programs are able to provide some help to provide you some respite.
Thank you.
I am checking out if we/he qualifies for additional services. I spoke with a elder planning agency on Thursday and there may be a few things that could work out.
BTW, it is pretty unlikely that he would even qualify for nursing home care, as he can still dress himself, feed himself and handle most self care needs (showering, shaving, bathrooming) and does not have significant health needs.
People with money & mild dementia can go into those expensive private pay Memory Care facilities (I visited one in the ritzy part of my city a few years ago, I believe that it cost over $8,000 a month and appeared to be filled with people with mild/moderate dementia or Alzheimer's. The dining room had small tables with white table cloths and fresh flowers and the waiters/waitresses all wore fancy jackets & matching slacks to serve the food. Wowser! Certainly not the type of place that accepts Medicaid.)
But, there may be some smaller group homes that hubby may qualify for in the future.
And Briolat makes an excellent point. There appears to be a huge, huge difference between placing a parent in a care facility and placing a spouse.
Of course, it is a very small group , but everyone of the people in my caregiver support groups who placed a spouse in some type of facility spoke about visiting/helping/working with/volunteering with activities/etc. with their spouse every single day (or almost every day). Most have talked about spending 6 to 8 hours with their spouse each day. I don't know if this is common or maybe people that are activity in caregiver support groups are "a different breed". Or maybe if you place a parent in a nursing home the visiting/helping/assisting is often spread among several adult children and even DILs, SILs & adult grandchildren. Or maybe after being married 40 or 50 years you have a different relationship with your spouse than a child who grows up, moves away and builds their own life. Or maybe it is combination of many things.
But, of course, 6 to 8 hours a day still leaves 16 to 18 hours for a spouse to be "on their own" and free from responsibilities.
I am checking out if we/he qualifies for additional services. I spoke with a elder planning agency on Thursday and there may be a few things that could work out.
BTW, it is pretty unlikely that he would even qualify for nursing home care, as he can still dress himself, feed himself and handle most self care needs (showering, shaving, bathrooming) and does not have significant health needs.
People with money & mild dementia can go into those expensive private pay Memory Care facilities (I visited one in the ritzy part of my city a few years ago, I believe that it cost over $8,000 a month and appeared to be filled with people with mild/moderate dementia or Alzheimer's. The dining room had small tables with white table cloths and fresh flowers and the waiters/waitresses all wore fancy jackets & matching slacks to serve the food. Wowser! Certainly not the type of place that accepts Medicaid.)
But, there may be some smaller group homes that hubby may qualify for in the future.
And Briolat makes an excellent point. There appears to be a huge, huge difference between placing a parent in a care facility and placing a spouse.
Of course, it is a very small group , but everyone of the people in my caregiver support groups who placed a spouse in some type of facility spoke about visiting/helping/working with/volunteering with activities/etc. with their spouse every single day (or almost every day). Most have talked about spending 6 to 8 hours with their spouse each day. I don't know if this is common or maybe people that are activity in caregiver support groups are "a different breed". Or maybe if you place a parent in a nursing home the visiting/helping/assisting is often spread among several adult children and even DILs, SILs & adult grandchildren. Or maybe after being married 40 or 50 years you have a different relationship with your spouse than a child who grows up, moves away and builds their own life. Or maybe it is combination of many things.
But, of course, 6 to 8 hours a day still leaves 16 to 18 hours for a spouse to be "on their own" and free from responsibilities.
You just reminded me of these small group homes. I was googling mainly out of curiosity about what is available in and around my town as far as assisted living should my husband or I need it and/or for financial planning purpose.
I was amazed at how many small group homes are out there and I live in a town in central Florida of about 30,000.
Many of these homes were in modern high end 4-5 bedroom homes. They had credentialed health care workers, frequently husband and wife as well as chefs that came in to prepare meals which were served in a dining room setting. The bedrooms were frequently set up with 2 to a room in twin beds. There were common areas for tv, music, activities like art, etc. Breakfast served on a patio. The reviews were all glowing from spouses and kids who had their relatives there.
I have no idea how much they cost especially against traditional assisted living facilities, but they certainly appear to be an option. Not sure if these have always been around or if this is a new "cottage industry".
In any case, if you google assisted living in your town or county, you will probably get these small group homes in your results and perhaps can call or have your son call while he is here to get more info.
You just reminded me of these small group homes. I was googling mainly out of curiosity about what is available in and around my town as far as assisted living should my husband or I need it and/or for financial planning purpose.
I was amazed at how many small group homes are out there and I live in a town in central Florida of about 30,000.
Many of these homes were in modern high end 4-5 bedroom homes. They had credentialed health care workers, frequently husband and wife as well as chefs that came in to prepare meals which were served in a dining room setting. The bedrooms were frequently set up with 2 to a room in twin beds. There were common areas for tv, music, activities like art, etc. Breakfast served on a patio. The reviews were all glowing from spouses and kids who had their relatives there.
I have no idea how much they cost especially against traditional assisted living facilities, but they certainly appear to be an option. Not sure if these have always been around or if this is a new "cottage industry".
In any case, if you google assisted living in your town or county, you will probably get these small group homes in your results and perhaps can call or have your son call while he is here to get more info.
We have a home like that in the town I live in. Our area is rural with probably more people living outside the town limits than in the town. The home is out in the country, probably has 4 or 5 people living there at most. Everyone seems to think it's a great place. I've never heard anything but glowing recommendations. If we have such a home in this rural area, I'm sure they are all over the country.
Years ago I had a friend who had both parents with Alzheimers and they were together in a home like that. At age 68 she was diagnosed with Alzheimers although some of us saw it a few years earlier.
I have a good friend who has been practicing medicine for 40 years. He has a practice in smallish town in PA. His practice is internal medicine with most of his patients being seniors. He said everyone, always, waits too long to find a facility for their loved one. It's almost always an emergency situation and a scramble to find a place, get all the legal matters settled, etc. He said people just don't want to admit their loved one needs more care than they can provide. Of course the patients don't want to go to a facility either so it's most often a big mess because the caregivers are completely unprepared.
One of my good friends has a mother in a medicaid facility out in the country. Her 78 year old father spends all day everyday with his wife even though she doesn't recognize any of them anymore. He didn't want his wife placed in a facility but she had Alzheimers for a few years and then had a massive stroke that left her unable to take care of herself at all. Nothing was prepared when she had the stroke. It was quite a scramble with lawyers and then making sure the woman would qualify for medicaid without her husband losing his house and all of their savings. They were able to accomplish all of it but not without considerable angst.
Germaine, I totally agree with convextech and historyfan - your body is telling you that you cannot continue along this trajectory.
It's my experience that when we keep pushing beyond what we have the strength for, our bodies will force us to stop.
Good grief, I just got over extended for about two months during my dad's final illness, death, and then funeral and moving my mom into a facility, and I came down with the worst case of bronchitis and laryngitis ever. I had to literally go to bed for a week, and then after that though I felt better, I still sounded so awful that people had mercy on me and I ended up getting additional, needed rest.
And that wasn't after YEARS of stress like you've been under.
Germaine, get this - we are all expendable. You too. If something happened to you, your husband would not end up living in the street. You need to think about how to handle all this with you LESS IN THE PICTURE. What if you simply could not take care of him? That may be a reality, so you may as well think about it now. What would happen? You need to meet with a social worker via his medical care team ASAP.
You also need to have a family conference and let your family know that you just cannot do all of this. EVERYONE is going to have to kick in to help both of you. Your son, your daughter, siblings, you name it. I can't remember if you or your husband have siblings but they need to be involved if that's the case.
What really needs to happen is your husband needs to be moved into a facility so you do not have the crushing responsibility of taking care of him 24/7. The little breaks you're getting here and there - two hours here, four hours there - those aren't enough. They still entail your involvement also. No. You cannot continue this pace. LISTEN TO YOUR BODY.
I'll tell you what's another likely scenario and an even worse one - BOTH of you needing urgent, daily care. Then what will your family do? I'm including your son and daughter in this mix.
The ironic thing is this - while you are killing yourself trying to handle everything so your family won't have to do more, you are inadvertently creating a situation which will probably eventually force them to be reactive in an emergency, and possibly truly uproot their lives and live in chaos and great stress. I know that is the last thing you want to do to your family. I know that is not your intention.
I think they need to hear this as well. You would be asking them now to help you proactively to head off a worse situation in the near future.
I forgot to add something else to the true story in our family about the caregiver who didn't line out other plans or coordinate with other family members BEFORE the inevitable crisis.
The husband and wife ended up in different facilities - in different towns. This was because as much as everyone wanted to keep them together, in the end it boiled down to "If you need our help, it's going to have to work into our own preexisting lives."
See, because there was no plan in place, everyone had to act reactively rather than proactively. This meant - since there was no POA - that someone had to apply for guardianship. ($5000 by the way - out of our own pocket. It took two years for us to get reimbursed from the estate.) This meant that since the couple had refused to move closer to those who would inevitably have to step in to help, that for nearly a year we had to drive an hour EACH WAY to visit, to help out, to keep up with their two different health needs before we finally said, "Enough is enough." By then my FIL was too sick to move, but we were able to move my MIL to a place close by, with the hope of having my FIL transferred to a rehab place across the street from her if he ever stabilized (he didn't). So he ended up dying, separated from his wife of 50+ years.
Since there was no "family plan," when both elderly people became so critically ill at the same time, the vultures swept in. Someone - my FIL's sister - somehow obtained a POA from him the last week of his life, when he was completely out of his mind with MRSA and literally on his deathbed (this didn't stand up in court but it wreaked havoc temporarily.) With this POA, she was able to bar "enemy" loved ones from his hospital room - because she didn't want anyone "on the other side" to find out she had that POA and to ask my FIL what the heck was going on. With that POA, she tried to withdraw money from their accounts. Thankfully we DID find out she had the POA because one of their financial institutions had the presence of mind to "break the law" and call the beneficiaries on the accounts to let them know that someone had waltzed in with a suspicious POA trying to withdraw money. On the same day, we also found out about the POA via the hospital because when we tried to visit my FIL, we were barred from his room and told it was because his sister had a POA now and had barred us. WOW, IT WAS TERRIBLE.
Not only that, but his brother actually posed as him and tried to get the beneficiaries changed on the retirement accounts! Of course, this would require notarized signatures, thank goodness, and my FIL passed away before any of that could be done, but had that not happened, his brother looked so much like him that I promise you, he could have used my FIL's drivers license and gone to a notary and had those beneficiaries changed. Even after my FIL died, his crazy brother, who had stolen his DL, actually went to other branches of the financial institution and tried to withdraw funds. (He did not succeed and all because THANK GOD one observant person at one branch realized what was happening and called my husband and his brother.)
Anyway, my point is that without family involvement and an "open book policy" with all potential helpers in on the plan, people get greedy. Or they try to renig on what they should ethically be doing. There's no plan and no accountability and you would be amazed at how weird people you think you know can get when there's ANYTHING at stake. I used to work at a bank and I've seen siblings fight or get sideways over $500 in a bank account.
Germaine, the day is going to come when you can't do all this. That day may be sooner than you think.
I'm going to start a thread on preparations for loved ones to help and be able to step in as graciously and quickly as possible when the day comes that they have to. Because that day nearly always comes, whether we like it or not. And we like to think the best of our loved ones but an emotional emergency tends to bring out the worst, not the best in people.
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