NOBODY HAS MY BACK

viarail

My LO is in a very expensive, but beautiful and is well cared for. However, the money is going fast. Worst of all is that I HAVE NO-ONE. No relatives. Friends who died. I am all alone. It is like being a live widow. I am also in therapy - but they cannot give you a family and the kind of friends you need at this time. If I complain I get the most useless forms of advice and you do not know it unless you go through it. This is a rant.

jfkoc

I will venture out and say that what you ae experiencing is grief. You are losing s person that for the most part could share most anything. You have a bond that when lost is like losing a part of yourself. I think we are forever changed by what we go through here and the loss we have.

Please know that here we really understand, we care and will always be here to listen. You are not alone!

-Judith

toolbeltexpert

Viarail, rant on, I do get it. I sold our house moved closer to the mc. And I pay like you.

Have you looked into Medicaid?

And I get being a live widower. I have mourned the loss of her till I came to the fact, she is gone. And being a live widower is just another obstacle to even trying to meet someone to start having a relationship for who knows how long limbo land.

You are a true adult orphan.

I have no family within a thousand miles. Her only family has visited for 3 days.

You might do a search for a post on here " the calvary isn't coming."It has been helpful to a lot of folks.

You get lots of support and advice that will be helpful.

We all get it here.

Stewart

Denise1847

Please rant on. You do have friends here. Have you thought of joining a local Alzheimer's group? Do they have support groups at the MC facility? Check out a local church or two. Many are very supportive and kind.

For whatever it is worth, even those of us with family and "friends" are mostly alone. People are kind but distant as if the disease can be transmitted to them.

Maybe consider placing him in a less expensive facility or maybe check out whether Medicaid could assist. Is your DH a veteran? I was told they will help a little with the entry fee, maybe there is something else that is possible.

RickM

I'm really sorry for your struggles. Lots of folks who listen and have good advice here. Only thing I can add is check out a local senior center, if there is one in your town, for ideas, friendship and support.

Best wishes, Rick

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viarail

I am not sure what medicaid is and if we qualify. I have a lawyer and I am not sure if I would make a good trustee. Part of the issue is that my LO - husband did not update his trust when the lawyer sent him a letter in 2019. I did not know about this letter as he hid it under his bed. So the house is in the trust. Working on a trust while I am trying to both clean the house for possible sale if my LO dies is overwhelming. Since this all happened so fast ( 1 year) I am in traumatic shock and everything is hard. So for me to do everything and have a friend (nope not there) come with me just for moral support - even if they do not come into the lawyers office - nobody is there for me. Also I did not drive for 17 years and I had to take lessons. Now I have started driving but I am nervous - although I drive well. I feel like I am drowning.

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Denise1847

Dear Viarail,

For whatever it is worth, the #1 way I stay afloat is through prayer. If it wasn't for believing that God is by my side, I would not be here. I have become a different person, humbled by the helpless I have and continue to feel through this terrifying journey.

Ed1937

Is your lawyer a CELA? If not, it might be worth at least having an initial meeting with one. A CELA (certified elder law attorney) will have the expertise to advise you, explain how Medicaid works in your state, and handle everything that needs to be done. This can really make a dramatic difference in the end. We have another member who trusted her lawyer, only to find out later that she was given poor advice, costing her dearly. There is a good chance that the first visit will be free of charge, but verify that when making an appointment. Time is short, so please get that taken care of ASAP.

I agree with Victoria that all the bells and whistles are for the families of PWD (selling tactics). The beautiful grounds and such don't really have a lot to offer the PWD. Better care is much more important.

Jo C.

Hello Viarail; I am so very sorry for all that is happening and for what you are feeling. It is dreadful to feel alone and out of control. It is good you are going to counseling; that would be a good sounding board.

The input to seek the advice of a good elder law attorney is a very good one and this should be done first thing, asap. Your elder law attorney will look into all of the estate, read the Trust, assess the finances and will be able to devise a plan for you and guide you as to how best posture yourself for the future.

A CELA; Certified Elder Law Attorney is of course best to have; BUT, there are not many CELA's out there in all areas. Just be sure you are using an, "Elder Law Attorney," if you do not have a present acting attorney, as a general attorney does not always have the deep expertise in complex elder laws that a specialist will have. However; if you already have a trusted attorney that you are comfortable with, you can make an appointment and discuss all of this with him/her. Be sure to make a list of all of your worries and concerns. If you can find a copy of the Trust, bring that with you. If you cannot locate the Trust, then the attorney will advise you on that since the house is in the Trust; it can all be worked out by the professionals. Since your husband is no longer competent to administer his estate, and if no secondary person has been named on the Trust as a Trustee, some changes will probably have to be addressed; let a trusted attorney be your guide. Do you know if you are in the Trust as a Trustee? If so, do not despair about not, "being a good one," all that means is that you have the right to make decisions and conduct business such as selling the house, using financial accounts, etc. It is not difficult or even that complex.

As for Long Term Medicaid; if we knew what state you are in, we would be able to give more input. Generally speaking, Long Term Medicaid is an insurance through one's own state that one must financially qualify for. In most instances, when applying for such care for a person in a NH, the person going into the care facility as a resident, usually needs to not be over a certain amount of savings in his/her account. IF the applicant is married; the at home well spouse gets to keep a certain amount of savings for his/her self and usually as well, keeping all income that is in her/his own name only such as Social Security, Pension, etc. Each state has its own rules. Often, the applicant, (the person in the NH), will need to spend down his/her own share of the resources to about $2,000. If the income of the NH spouse is too high to qualify, then in most states, the overage amount is paid each month to Medicaid as the applicants "share of costs." Most often, the at home spouse's income in the spouse's name only, is not counted. It would be good to know what state you are in. In California, it will soon be more liberal regarding savings, so that too is something to find out about if that is your state.

Be very, very cautious to consult with a skilled, knowledgeable attorney before selling the house as it could have implications for Medicaid or other important issues. Your attorney should be able to tell you. It sounds as though your spouse is in a private pay only facility that is probably very highly decorated and uber costly. Most of the time, those posh surroundings are only for the well family members to feel positive; the patient resident does not benefit from it and most often does not even notice it. it is the quality of care that is important and that can be found in lesser expensive facilities and even in some facilities that have a contract with Medicaid.

Being alone is not a good feeling and that is an understatement. Do you feel you can begin to expand your horizons and reach out a bit? To have a friend, one must put themselves out there and be a friend. Suggestions for meeting people would be in a place of worship if you are comfortable with a church or synagogue. There are groups that meet in such places just for socialization and there are also usually helping people. Also, if you are 50 or older, there is also the ability to use a Senior Center to meet and get to know people through their activities. Local libraries have reading groups and activities. If there is an Alzheimer's Support Group near you, that too is a good way to meet people who understand and who also usually have a lot of information about resources in the community. Try looking for groups of interest near where you live.

And as mentioned in Victoria's above Post, the Alzheimer's Assn. has a 24 Hour Helpline at (800) 272-3900; no fee for services and should you call, ask to be transferred to a Care Consultant. It is a good place to go and vent feelings, to be heard; to gain information and sometimes a bit of help with our problem solving.

One step at a time; make a detailed list - discuss it with your therapist if you wish as well as your attorney, and then one foot forward at a time and it will begin to make sense. If the present facility is far too expensive, then it may also be a good idea to look into lesser expensive settings AND to see if your spouse may possibly quality for Medicaid Long Term Care in your state. (Long Term Care Medicaid is different from regular Medicaid so always be sure you are looking at the right type.)

Let us know how you are doing, we will be thinking of you and hoping that things begin to soon look up a bit better.

J.

arseaarsea

I just want to thank you all for the posts. I will be calling the 24-hour Helpline and search for Elder Care Lawyer (CELA). We have limited resources and no family nearby. We have a daughter about 1000 mi away, who we thought could/would help us, but our relationship with her has deteriorated. I feel I have been floundering without direction and on my own lately. My DW is still at home, quite functional but progressing. I am commenting as a way of committing myself to focusing and finding direction.

Thank you for being here.

upstateAnn

It is so difficult when two become only one. I second everything here. Join your local Alzheimers group if possible. Also, and this can be hard at first I know. Make time to volunteer at a place like a local soup kitchen or food pantry or a faith based organization through your church. You have a lot of talents andstrengths you probably are unaware of. Why is this important? You need an identity and validation aside from your husband. My volunteer work is on political campaigns. I have met tons of people. Whenever possible I take my DH along. He enjoys it.

Ed1937

"If I complain I get the most useless forms of advice and you do not know it unless you go through it." I think you are really lucky if you find a therapist who can understand what caregivers go through. That's why a good forum like this one is so important. Good local forums can also be very helpful. You will get a lot of suggestions here from people who have seen it all. But it's important to know that not every suggestion will work for everybody, but every suggestion will work for somebody. To get the most out of the forum, be active. The more active you are, the more you will learn.

Paris20

Viarail, you’ve hit on a very relatable situation. Ranting is perfectly appropriate. I live hundreds, even thousands, of miles from my closest relatives. My husband was diagnosed with AD in 2015. Except for a few family visits, I’ve been on my own. After my husband had a paralyzing stroke last year, I could no longer care for him at home. He’s at an upscale facility. Ironically, that gave me the ability to start taking care of myself. He had been belligerent at home and, despite medication, his behavior was becoming out-of-control, even dangerous. On the other hand, he clung to me 24/7 and had become incontinent.

DH is in the best facility in our area and is well cared for. It almost feels like a B&B…almost but not quite, of course. I am worried that if anything happens to me, there might be little money left despite a nice nest egg. My 101 year old mother died recently. My brother told me what my inheritance is likely to be. My reply was that it will all go to the skilled nursing facility. The cost is shocking, even with our long term care insurance paying about a third. Acceptance of what is and living one day at a time were skills I had to develop. It has freed me from the daily anguish of coping. There’s support and empathy out there but we cannot change the outcome. We can only change our reaction to it.

Denise1847

I can certainly relate to your feeling. My sister, who lives 2 miles from me and who I took care of through her own medical crisis, said the me the other day, "I am amazed at how well you are handling this. You are doing such a great job." There is no inquiry as to how one can help. I felt like saying that I was so glad she was pleased with my performance but I took the high road and said nothing. Even when you have family in your life, it doesn't mean that you have support from them.

CindyBum

I'm so sorry. Truly.

The feeling and knowing how alone I am in all of this is soul crushing, as it must be for you. This path is one lonely friggin' path.

We may not be friends, but we are here and we hear and see you. Rant away.

viarail

Thank you for all your kind and helpful comments.

I have an elder law lawyer.

I also live in a metropolitan US city which is major huge. Thus the lower cost places are too far away for me. I do not drive highways.

I am looking for an affordable alternative to the SENIOR LIVING HILTON which is so expensive and also so beautiful that everything else looks pretty much awful.

The not having family cannot be changed. My understanding friends are all widows who have gone through the same hell and MANY who HAD families did not get the support they needed.

The town seniors place does not have ALZ/DEMENTIA resources. They have a speaker who comes once in a while.

My name is on the deed but when the trust was done - in 2006 - it was an IN CASE OF DIVORCE trust.

My husband left such a mess that I had to put together whatever was relevant on the floor and send it to the lawyer.

My cleaning lady found a letter under the bed from the lawyer who did the last codicil (change) to the trust urging him to UPDATE or at least look at the trust in 2019.

So as of now - if he dies - I do not get the house as it is listed as AN ASSET in the trust, when I naively signed a quit claim deed. Lawyers do not give out informed consent and I did not know what I was signing away.

The entire trust is a nightmare - it is EVERYTHING one should NEVER DO....and that is why I got a lawyer immediately.

BTW - bad trusts, bad wills, grasping relatives and other issues ALL HAPPEN to anyone who has a dying loved one - and many widows and widowers only find out too late.

And it does not happen to uneducated or stupid people as one might think. It can happen to ANYONE!