My Mom has been in a nursing home now for 4 months. Just for those of you contemplating or planning how to care best for your AD Mom, Dad or spouse, this is basically what her life is like there.

She wakes up in her bright cheerful single room now decorated with large colorful photos and paintings from her old room at my brother's home, including one of her whole nuclear family in 1927 - herself and her sister dressed in short 'flapper' dresses (no waistline) and marcelled hair .. looking lovely, like something out of Ziegfield's Follies (you youngsters have to check the history books for that).

She is changed and bathed and dressed, and wheeled in her wheelchair to the dining room where 30 people eat together. They stay there and talk long after the food is eaten, and someone comes to wheel Mom to the next activity of the day. Something is going on virtually all the time, there's a lounge with residents and guests sitting around talking, or, mainly in the aftenoons, musical entertainment, bingo etc.

The more luicid patients go to their rooms and do the things they like: one makes scrapbooks, one paints, etc. Mom can't do any of that any more. She has her TV and her good radio, but needs help turning them on/off. At lunch they sit together and eat again, and almost every afternoon Bill (my brother) takes her outdoors for a walk on the NH grounds, or to sit in the wintry sun in a gazebo. From out there he often dials my number and I get to talk to Mom.

At suppertime they all eat together again, and often there is some kind of entertainment in the evening, a movie, a concert, a game, etc. Mom is taken back to her room at about 9 PM and that's when my sister usually calls.

When you ask her about it she will invariably say "no one has been to see me. No one has called. I have nothing to do. It is lonely here. I will soon be walking and go home." and the only possible answer is "that's too bad, I'll call more often, Yes, you will soon be home."

She tries to 'walk' a little every time Bill is there, but never gets further than a few steps, and gives up. They change her if they need to, but sometimes she says she has to go and they take her to the bathroom. There are enough Aides so she gets plenty of attention. 5 patients to one Nurse's aide. They are all lovely people who really care about the patients.

I think as an alternative to caring for her in one of our homes, this is a good soution. She doesn't need to remember anything, decide anything, or worry about anything. She is like a very small child. But not unhappy. She laughs a lot and tells her jokes. Often so skewed that the funny part never appears... but she laughs. There's an RN and a doctor on duty around the clock.

It is not so bad .. and she is warm and safe and fed and medicated (they remember her pills, she can't) ...

Love,

Martha

My mother's days in the assisted living facility and NH were very much like this. Each facility was clean, cheerful, sunny, decorated in a home-like way, and smelled good. The staffs also obviously cared for their charges. As Martha said, not a bad way to live at all!!

I hope it's an affordable option for each of you still on this difficult road and that you can give yourselves permission to let go when it's good for your bundle and best for you.

Blessings - Barbara :)

My FIL is in a nice facility as well, but he always wants to know when he will be getting out. He wants to leave with you, but when you ask where he wants to go he does not know. His violent episodes tend to occur after someone visits. He has been in two different nursing homes in the past year, but he still wants to leave. Do they ever stop asking when they will be able to leave? This is the hardest part for us because we feel so guilty when we leave.

Jane

Yep, they stop asking when they forget there is anywhere else to be or stop talking, whichever comes first.

Hang in there. It does get easier as they remember less. Sad, but true.

Hugs - Barbara :)

Mom has been complaining to Bill that no one ever comes to see her, and no one ever calls. Bill noticed today that the phone was on its cradle the wrong way around - so she must have used it (she can't dial so it was in incoming call) - and he also wrote the following:

" Mom also asked if I knew Uncle R - did I ever meet him. So we talked about old times when we were all together."

It is sad that she asked that ... we were all together throughout our childhood, and well into adulthood, and her brother was an integral part of Bill's life until he died in 1988. Now Mom asks if Bill ever met him ...her mind is going fast.

Now a problem with Medicaid: we need a statement from the IRS that Mom was not required to pay income taxes in the last few years, her income was well below the minimum. We requested the form in early December, got it and mailed it in. Called again in January and were told it takes 6 weeks. It has now been 8 weeks, no paper. No paper, no Medicaid. We don't have the money to keep her in the NH after March 30.

I don't know what to do about this one. I made the 2 phonecalls and was assured the papers would come....

Any ideas?

Love,

Martha

Do I remember that Bill saw a lawyer about your mother's estate and such? If so, he can ask the lawyer to write a letter to that government office, inclose a copy of the copy of the papers that were sent weeks ago, and remind them the time is past that your family should have heard from them. That ought to wake them up before the end of March - one would hope!!

Maybe another phone call, too.....?

Hugs - Barbara :)

It's the elder lawyer putting pressure on Bill to get the papers in! I also recommended that he call again today, and he did. The lawyer said if you have applied for it, you can only wait.

Meantime the money is almost gone. If we don't get her on Medicaid someone has to take her home .. someone who can lift, bathe, change, feed, dress, supervise and entertain and protect her, and regulate medicines for her, and give up having a life for her.

Someone who does not have stairs in their house.

Someone who does not have osteoporosis.

That rules out E and Bill,

leaving ...

me.

OH NO! :eek:

Martha

PS after 8 months of freedom I can't imagine it ... it boggles the mind. Luckily I am the only one on my rental lease ... I don't think I would be allowed to suddenly have a permanent guest. Maybe Bill could change their dining room to a main floor bedroom? It's only temporary after all, Mom will not last forever. But who will take care of her hygienic needs? Nothing but silence from sister E who a couple of months ago promised to 'take over' the Medicare hassles and did nothing. Anyhow, I am alone and they each have 2 in their homes to share the burden .... I hope it won't all fall on my shoulders again ...

Oh Martha, that is so wrong. You did all that you could for as long as you could. It's your time with your family now.

No guilt that it's someone else's turn for the short time until that paper arrives.

I'm gonna start a new thread because I have some legal questions, myself, now.

Martha, I hope the papers come soon. I know getting Medicaid approved can be nerve racking. You have earned your time off.

Maybe if the time gets closer you could have them faxed to you?

We will be happy if we get them at all ... we don't understand the delay. Bill sent the form in on Dec 11.

Meanwhile he totally rejected my idea that we will all have to take turns caring for Mom if she gets sent home for lack of funds.

He says he is too old to pick her up. He is 7 years younger than me, but I think he's right ... I get backaches just from vacuum cleaning. Mom has become so old that even her children are old. Sad but true.

He says if the worst comes to the worst we will do anything to keep paying for the NH; mortgage his house, sell property, take out loans. He does not expect me to take her in. I agreed to send whatever money I have left to help out. But maybe it won't come to that after all ..

love,

Martha

PS Heard from my sister last night. Just a 1 sentence email: don't worry, it will come.

Martha, keep the phone calls up. If worse comes to worse (and it sounds like it has), call Sen. Barack Obama's office and tell them of your situation. His website is obama.senate.gov

He's an Illinois senator but he's doing a lot of work on behalf of Medicare and Medicaid recipients. I don't know if this will help but it's worth a shot.

And when you call Medicaid, tell them you're calling senators. Then see how quick they are to respond!

Kill 'em with kindness. And if that don't work, show 'em some muscle! :)

Time to be firm. They're wanting you to give up so they don't have to pay that money. If you all refuse to take her in, they can't put her out. I know that sounds cruel. But why should you and Bill and even Elsie have to foot the bill when your mom CLEARLY is eligible for Medicaid? She paid in to Medicaid all those years. Her money has been spent down. You all have done everything that you were told to do in order for her to be eligible. And she deserves to be able to stay where she is without you all having to go through financial hardships yourselves to keep her there.

Keeping my fingers, toes and whatever else I can cross crossed that this gets settled very soon......

Love, Barb

I hope it will all work out ... it's still 6 weeks until the end of March. And if all the info doesn't get in, maybe it will take a month longer .. not be refused forever (I hope.)

I think Bill has to put a little pressure on the lawyer who already got over $10 000 to help us.

A call or letter from him might carry more weight than from us Actually it is the IRS that is causing the delay, not Medicaid. Each time I call I reach a different person who has no records of the previous calls, although they supposedly record everything. They only want to send us the form, again, and again. On the bottom of the form it says "will be processed within 10 days." It was mailed in on Dec 11. That's nearly 2 months ago. No receipt ever came in that they got the mail.

Both times I called I got over 45 minutes of "waiting time" after pushing all the required buttons, and not finding any option which deals with this problem. When I got through to a real person, they listened to my whole story (not having any records of hearing it before) and then suggest filling out Form X. I then say Form X was sent in on Dec 11. The answer 2 weeks ago was, 'well, it takes 6 weeks, just wait."

So, we wait. Putting pressure on them doesn't work because you get a new person each time and no one knows there was any previous pressure. I even think we get to a person in another office, in another state, or even country ...

AAARRRRGYHGHGHGHGH.

Haven't heard from Bill yet today. Maybe there is good news. Maybe the letter came!

Please do not judge me too harshly for what I about to say. I don't think Mom's life quality is very high these days. She doesn't know from minute to minute where she is or why or what she is doing. Yet it is costing us $11 000 a month to have her fed and washed and medicated. I continually ask myself, God and the Universe, 'why is she still here?' Is that a bad thought?

love,

Martha

Martha--There is no way I would judge you harshly for thinking something that I find popping into my mind a few times a day in regard to my FIL. He would hate to know what he has become. I hate to watch his downward spiral and because he is in good health physically I may have to watch it for a long, long time.

Jane

Martha,

I said about the same thing when my mother was so out of it. Do you remember the old movie, The Ghost and Mrs. Muir? After I'd remind God that Mom was waiting to join Dad, I would tell Dad that he should come get Mom like the Captain came to get Mrs. Muir at the end of the movie!! Ah, I can just see Rex Harrison walking Gene Tierney off into the clouds!

Also in Grumpier Old Men, when Burgess Meredith's character dies, Jack Lemmon says, "Well, Pop, God remembered you."

No doubt, God understands.

Hugs - Barbara :)

Thanks, Friends!

Love,

Martha

Not only will we not judge you "too harshly", we won't judge you at all. That is a perfectly normal thought/feeling.

My husband doesn't like life and talks about suicide a lot. He talks about wanting to die. This is all related to his heart disease, and his focus on money and monetary possessions (which he doesn't think he has enough of), and what he deems worthwhile in life - and was a common thought of his long before the possibility of AD even came up. There have been so many times that I have thought it would be best if God would go ahead and take him since he is so miserable. I can't imagine how much MORE I will feel that if/when the AD begins to significantly impact his life. I know my friends and family understand how I feel.

On the NH thing, I agree with Barb. I wouldn't move her out. What is the NH going to do? Have you talked to the Social Worker at the NH? If the approval process is delayed, will it be retroactive at all? And calling your congressman's office for assistance is a good idea. An inquiry from them to the IRS on your behalf might just get some action... As a former federal employee, I know my agency "hopped to it" when there were inquiries from a congressman's office.

Good luck.

Thanks so much for this suggestion! Will ask Bill to call the NY congressman. Mom was very active in local politics all her life. She went on a bus trip to Albany (state capitol) one time; all the senior citizens dressed up in fake arm casts or head bandages, agitating for the cuts in Medicare to be abandoned .... she knew some of the old time politicians personally, such as Geraldine Ferraro who ran for vice president, and Mayor Koch ... maybe now they could help her - although she has forgotten she ever was that active person ...

love,

Martha

Martha, we would NEVER judge you!!!! I prayed for God to take my grandma just before she died. I understood as best I could what she was going through and I KNEW she wouldn't have wanted to live like that.

Remember we understand........

I understand. To just exist and not live with purpose is not really living.

But when you find yourself questioning why, remember there's a reason for everything. I'm a firm believer in that. Maybe somehow, some way, your mom is making a positive difference in someone's life. It could be someone who's a caregiver or another patient. I know there doesn't seem to be much of anything positive to come out of your mother's situation. But if you can just pull out something positive and kling to it, it may help you. There's no doubt that with all the people in the nursing home, someone is touched by your mother, whether you know it or not. Someone there cares and it brightens their day to see her.

And phooey on the IRS! Get names, phone #'s and extentions. Write the names down along with the dates you spoke to them, who you spoke to and the jist of the conversation. Keep a written record. It may help you in the future.

Pity this has to be such a worry. I honestly thought everything was going to roll over smoothly for you. Kinks and knots, eh? :rolleyes:

Deep breaths, dear........

Love, Barb

Funnily enough, it is the one who always criticises everything we do, who always has a better idea and a 'cure all' for Mom, who now says, "Relax! Wait! It will come."

In fact I did write down the names of the 2 people I spoke to. So that's something. Unfortunately Bill didn't keep a copy of the form he sent in. It was one of the papers Mom had to sign herself, the day the lawyer went to the NH and was kept waiting (Mom was in Therapy) and huffed off, causing Bill to have to get an ambulette to take her to his office ... for some reason, certain things can't be done on the POA. Yet, if HE had it, maybe he also has a copy. He OUGHT to ... maybe this is all going to work out in the end.

I know there must be a reason God wants Mom to stick around. I can't see it, but there must be.

Thanks

M

No help at the first IRS office. Bill went there today. There was no one there! Only a recording. It boggles the mind what it was saying:

" You cannot come in without an appointment. You cannot get an appointment over the phone. You have to come in to get an appointment to come in. No one is here right now."

That was all! No mention of what hours someone IS there.

I think we are in Wonderland now .... Incredible.

Later:

Not wanting to give up, Bill went to a different IRS office quite a bit further away. At first he was told, the person in charge is on vacation. BUT there is a substitute.

He had to wait, but got in to see the sub. WONDER of wonders! She accepted his POA and immediately got into Mom's financial records on the IRS computer. It took half an hour but Bill now has a printout of all Mom's earnings for the past years, I think 5 years. None of it was ever taxable because below the minimum.

NOW he has all the information the lawyer requested. :bouncing: The lawyer can now send in an application for Medicaid which is very likely to be approved, in spite of cutbacks, because it includes every possible thing the government could have used as an excuse to reject her application if she did not send them in. And if I understand it correclty you can appeal once - with another expensive lawyer - and that's it. (my question is, who can afford a lawyer when they are so poor they are eligible to get Mediciad? so this leaves out most of the people who need it most.)

Going to this Elder Lawyer was the best thing we ever did - he knew the ropes. He advised us to pre pay for Mom's funeral , pay his fees up front, (all with Mom's remaining money) and then gave Bill a detailed list of everything he would need to get her in. This IRS document was the only one not yet received. Now he can go and do it.

I've been prayng for a solution and it came ... certainly a better one than Mom passing on in time, before she outlives her money!


love,

Martha

That is wonderful news. I am so glad that the IRS person at this other office was able to help finally! Now we can pray for a quick approval for the Medicaid.

Excellent news!!!!!!!! Kudos to Bill for pressing on!! :D
Whew!!!!! What a relief!

Cheers!!! Barbara :)

YAY!!!!!! Perserverance and persistence. It paid off!!!! Good for Bill and you! Your mom is very lucky to have the two of you pressing on for her.

If need be, Bill can contact the county in which the nursing home is and ask about legal aid. I know some people who have used it here-mostly in domestic abuse cases and divorce. These are lawyers who usually work on a sliding scale basis and sometimes pro bono. Just a thought.

Love, Barb