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Will I last the day
Internal Administrator
Posted: Tuesday, January 17, 2012 4:00 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Fluffy

I am usually on Caregiver forum but have found that o be less than what I want. I get the feeling that they are so into caregiving that if you don't feel the same way your ignored.
Yes, I will say I'm looking foir sympathy, someone who understands.
I have had it. Lately it's all I can do to get through the day. Husband will not shut up. His mouth goes constantly. Talking to himself or calling me every 2 min. It's Ma, Ma, Ma. Oh yes, he knows my name because if Ma doesn't work then he calls me by name. Lately I have been ignoring him as much as I can but to hear him calling is so annoying it's bringing me to want to run out of the house and not come back.
Every two minutes he's asking what to do. Sorry I'm not an entertainer. I'm not anything anymore. Just a slave for husband. He has not patience. Wants what he wants when he wants it. Has no sympathy if you have an injury(have badly pulled ligament in knee). But he was always this way. The lord and master. I was treated more like a subject than a wife. I will state that husband is 94 snd I'm 64. Have been married 38 yrs. In many ways wish I had stayed single, for what I have gone through. Now I have to take care of him. Don't think he would do it for me. He wouldn't know how or what to do.
I did have him going 2 days a week to daycare, but got UTI and I havn't sent him back. I had to have someione come in to get him ready in the morning. Too much for me when average time I get to bed is 3-4 A.M. He stays up late. The last HHA here, I was missing $380 out of my pocketbook. I left it in dining room by mistake.
I'm told to place him. But since his pensin is $200 over what the state allows you for income every is private pay. I wrote quite awhile ago about investment we were talked into. At thaat time I wasn't up on all this stuff, husdband never discussed finances with me. Were allowed to take money out once a year at 90%.But rules changed and penakty now is 40%. That would cost us over $200,000. Only other thing I have is the investment my inheritance is in from Mother and Aunt. But why should I spend that. Income from that will help me when husband no longer here. To get HHA for whole day would be an avg. of $300 day. Might as well put him in ALF for $7,000-$8,000 month. Nursing homes are around $10,000 mionth for a half decent one. We oinly have enough on hand to pay for about 6 mos. without going into my inheritance. So what's thr sense. I have lived in this house all my life and when it came to me I never put husbands name on it so they can't touch that.Elder care lawyer I went to wasn't that much help. He more or less said since almost everything in my name now, why worry. Have to look for new one.
I have lost interest in everything and am so overwhelmed right now I don't know what to do next. I'd just like to run away.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Cathy J. M.

Fluffy and shearbears, please keep looking for better legal advice. JAB and others here know more about how you can protect some of your savings and income so you will be OK after your husband is placed. I don't think you've gotten good advice so far. You CAN place your husbands.

I do know that you can protect an adequate amount for your needs. Will it be everything you've got in savings? Maybe not. But what good will lots of money due if you're dead from the stress of caregiving when you're sick of it?
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Fluffy

Hi shearbear,

I'm so sorry your hasving the problems your having with husband. But it is nice to know there is someone that is in somewhat of the same situation I'm in. It's a terrible situation to be in.
You must be going to the Gulf coast. Enjoy your time there. I'm 4½ blocks from the beach here in N.J. but never see it. Glad you have someh=where to go. I don't. No one else to take care of husband. My husband used to do a lot of yelling and putting you down if you suggested something to do. Never wanted to spend any of his money. But since he got AD he did a 180 and is more laid back. Now I';m the best wife i the world. But it's too late.
I think my husband is further along than yours.
Never been told what stage but I wuld say moderately severe. He was diagnosed in 2002.
Believe his bowel control is starting to go. Has had few accidents. Of course he can't walk that fast with his walker. Had broken hip last year.
Hope your Father gets better. Enjoy your time away. Keep in touch.

Mary,
flufy
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: So Sad

Fluffy,

I'm no help for advice, but I wanted you to know I read your post and I am listening.
Sometimes we can take just so much. I hope you can figure out a way to get some help.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Ben's wife

Hi - I'm new to this group, but can certainly empathize with everyone. My husband is probably in stage 6, moderately severe. He knows noone but me, and doesn't recognize me as his wife, just knows I belong here. He's calm, sleeps a great deal. But when he's up, it's a constant: What are we going to do now? Where are we going? I do take him out, but he gets totally exhausted. He's not mean in any way, but can't follow any instructions, and constantly closes ^ locks the doors, closes the blinds - he's 88, and unable to do anyting. I don't know how much longer I can do it all.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: shearbear

quote:
discussion



Message Boards Forum Index Spouse/Partner Caregiver Forum Will I last the day

Hi Fluffy,

I just want for you to know, I am in a similar situation. I will not be able to place my husband in nursing facility due to the money we have is my retirement. Husband is 79, I am 56. My husband is in Moderate Alzheimer's, Stage 5.
I have decided every month I am taking off for a few days and he won't be included. He doesn't appreciate anything anymore, so if I took him along all he would do is complain and say he wanted to come home. So, I can't make My life about HIS, it is not fear to the both of us. I am leaving Tues and I won't be back until Friday night. Neighbors are supportive and pitching in, going to look in on him. I have left strict instructions not to be phoned only in case of emergency. Going to see my ill father and walk the beach, meet a friend or two and just be happy.
I am making the decisions ...not my husband anymore. And "YES" my husband is abusive towards me and he will kick, scream and call me every name in the book and you know something? I just don't care anymore.

I do so relate with what you are saying. I hope your life improves.

Nameste,
shearbear
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: LarryD

Fluffy,

It sounds like you both could use a ramp to help you get down those steps. That is something I built that added months to the period where I could take my wife for a walk or a ride.

Is there someone who could build you a ramp, with a handrail on both sides and a non skid surface?

Maybe the local Alz Assn. could recommend a volunteer to help you.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: ToniG

OMG, does this sound familiar. I am 65, hubby with AD is 77. I just recently placed him into a NH. Lots leading up to this, but basically I just couldn't take it anymore. Like you I don't think hubby would have put up with me if the shoe was on the other foot, in fact my Mom had AD and I placed her in NH long before she was ever as bad as he.
Our marriage was over years ago, in fact he told me once he married me for convience, and I guess I did the same. The house we live in was my parents and she signed it over to myself and my son shortly after Dad passed, but I bought my son out and my husband wanted his name on it and so I did.
Hubby was an alcoholic, so we more or less went our separate ways, but when I got sick he dropped me off at the ER like a stack of potatoes and when released had a Taxi take me home, he was too drunk to drive.
Now, I had to take care of him, his dirty diapers, his abuse, and later his violent behavior took me over the edge. I can't begin to tell you how my house looks, the things that were ruined. The bruises on my back and shoulder from him pushing me against the wall becuz he wouldn't let me change his dirty diaper.
I went to see 2 lawyers, I'm terrified about what would happen if I had to go on state aid, but I knew it was going to happen, I can't handle it anymore. I'm in Ct, and the law is they allow you to keep your home, and give you an allowance to live on, plus you will be able to keep * in Ct. a fair sum of savings.
I threw my hands up and went for it. I'll have to spend down, I bought some things for the house, and plan on getting some things repaired, but I suspose a good part of it will go toward the NH.
I guess I could have had a live-in come, and I did for about a month until the last trip to the ER, and now I just want my life back.
I do have to be honest and say I am feeling very confused, and sometimes I bite my nose off to spite my face, I think I'm trying to punish myself for this. I'll get over it, but now it's just another thing to deal with.
I do understand, and I know this is the hardest thing to deal with. I think once I resigned myself to the truth I gave up being scared about the money part.
Don't know if this makes any sense, But I just wanted to share with you and let you know you are not alone.
Hugs,
Toni
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Fluffy

Hello Ben's wife,

Seems we have a lot in common. I wish I could take husband out fr drive but to get him down just the 2 steps is so difficult. He is rather week and unsteady. And since I pulled a ligament in my knee about a month ago am afraid to try. I don't have strength in it yet to assist him.
I know how you feel when it's all day what do I do, what;' now, etc. Sometimes you get to the point you want to yell shut up but you can't because they can'thelp it. He is always wanting to go home. Was told he would grow out of nthat but it's been 2 yrs. and he still wants to go home.
One thing that gets me is I can have the a/c on at 76 and he doesn't say a thing. But have windows open 80 out and nice breeze coming off nthe ocean and he says it's cold, and wants the wndow across from him closed. On and on it goes.
WEishing you the best doiwn this long, long road. Happy 4th.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Fluffy

Hello Larry,
I do have a ramp. When hubby was in re-hab last year after breaking his hip I bought everything I thought he would need when he came home. Even a patient transport chair. Spent over $800 for the ramp and now it is sitting in our shed. It is aluminum, two sections 12 ft. long. But each section weighs about 40 lbs. and now I can't pick them up that easily. Also when unfoklded they come out into the middle of our driveway so they have to be folded, unfolded. Wasn't so bad getting him up in transport chair but he refuse to go down. Was afraid. So much for brilliant ideas. Our driveway is rather close to he house which makes it difficult to put something permanent in. Maybe I'll try the back door when I can get the ramps back there.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Jim Broede

We need private and government social programs that give respite/relief to 24/7 care-givers. Nobody should have to be a 24/7 Alzheimer care-giver. I despise a society that allows it to happen. --Jim
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: D.D.Smith

Even though my husband is only in very early stages of dementia, I can speak to the medicare issue from my sister's situation. Her husband died in a nursing home here in NC about 5 years ago. They had sold their place in Florida and moved here, and were renting. Even though home ownership wasn't an issue, they had quite a bit of money. She was advised to spend down his half, and could use any of his money for her own needs. In addition to his pension checks, a lot of the money went to pay for NH care. But she bought a new car (doesn't drive!), a riding lawn mower, new appliances, etc. In addition, she kept reciepts for EVERYTHING, down to the last gallon of milk, utility bills, rent, etc. These things all went toward the "spend-down" of his half. Needless to say, within a couple of years, he qualified for medicade.
I think medicade varies from state to state, but this is worth thinking about.

Dot
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: lurk

Well, maybe the home ownership makes the difference. When my Mom passed, Medicaid took their fair share from the sale of her home. I believe in paying for our own needs, but my sisters and brothers needed that money so much that I felt badly for the decrease.

I will consider your advice about spending down though, Dot, for my question on another thread.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Cathy J. M.

There was also a study in the Netherlands of NH patients with dementia, testing the effect of doubling light levels during the day, and administering melatonin. Doubling the light levels had a beneficial effect on residents' mood and behavior, and melatonin was OK (at least for the study period) if combined with doubling light. Melatonin by itself, though (without increasing light levels during the day), actually increased problems with mood and behavior.

I've got the link to the study somewhere and posted it earlier in a long thread on using light as therapy for delusions.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: FluffyChenille

For caretakers who are being held hostage with a loved one who seems to be needing constant attention...talking all the time, up all night long, agitated etc, I found something that has been a life savor for me and my father. "Melatonin". Unbelievable how this stuff is working for him. I give him 5mg at night an hour before I want him to go to bed. It not only helps him sleep for longer periods of time but it mellows him out and keeps him from wandering and ranting all over the house. It also has mellowed out his behavior during the day. He does sleep much more with it but quite frankly, considering the demands and attention he always wanted all day and night before, his sleeping now is a pure blessing. When he wakes up he is hungry but cheerful. He eats, takes a little walk outside, comes in and watches TV for about an hour and it's off to sleep again till his next need for food or to go to the bathroom. I tell you...this simple over the counter supplement has worked. Google "melatonin and dementia" and you will discover many different things said about it.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: JAB

FluffyChenille, be careful with melatonin. It's not a good idea to give melatonin on a daily basis. Repeated administration of a pharmacologic dose (3mg) can cause the patient to build up a tolerance, and can eventually disrupt, rather than improve, sleep in some people.

Melatonin use on consecutive nights should be avoided, and only the lowest effective dose should be taken. An effective dose is often in the 0.1 - 0.3 mg range.

http://www.alzforum.org/dis/tre/drc/detail.asp?id=52

Melatonin can cause a number of serious side effects, which become more likely as the patient continues to receive it. High doses (i.e., more than 0.3mg) have been associated with the following adverse events:

* Mental impairment.
* Severe headaches.
* Nightmares.
* Depression.
* Confusion.

There is evidence that melatonin might have proconvulsant activity. Therefore, supplemental melatonin may exacerbate seizure disorders. (Note that dementia patients can develop any type of seizure disorder at any point in the progression.)

"...Some types of depression may be worsened by taking supplemental melatonin and close monitoring is advised. Melatonin supplementation may aggravate autoimmune disorders such as arthritis and severe allergies. Melatonin shrinks arteries and may be contraindicated in persons with cardiovascular disease. The effects of steroid drugs such as cortisone and dexamethasone may be counteracted by supplemental melatonin. Immune-system cancers such as lymphoma and leukemia may be further stimulated by melatonin supplementation..."
http://www.ocdrecoverycenters..../prot_melatonin.html

Also, melatonin can have serious interactions with a number of meds, including the antidepressants that are often prescribed for Alzheimer's patients. Anyone considering starting a loved one on melatonin should discuss this with the doctor and the pharmacist. See, e.g.:
http://www.medicinenet.com/melatonin-oral/article.htm

"...If you have any of the following health problems, consult your doctor or pharmacist before using this product: diabetes, high blood pressure, immune system disorder, liver disease, mental/mood disorder (e.g., depression), seizure disorder (e.g., epilepsy).

"DRUG INTERACTIONS: ...Before using this product, tell your doctor or pharmacist of all prescription and nonprescription medications you may use, especially of: "blood thinners" (e.g., warfarin, heparin), blood pressure medications (especially nifedipine), products that contain caffeine (including coffee, tea, some sodas), drugs that may affect your immune system (e.g., azathioprine, cyclosporine, prednisone), fluvoxamine.Tell your doctor or pharmacist if you also take drugs that cause drowsiness such as: certain antihistamines (e.g., diphenhydramine), anti-seizure drugs (e.g., carbamazepine), other medicine for sleep or anxiety (e.g., alprazolam, diazepam, zolpidem), muscle relaxants, narcotic pain relievers (e.g., codeine), psychiatric medicines (e.g., chlorpromazine, risperidone, amitriptyline, trazodone). Check the labels on all your medicines (e.g., cough-and-cold products) because they may contain ingredients that may cause drowsiness. Ask your pharmacist about using those products safely.This document does not contain all possible interactions.
"

To my knowledge, the only safety study that has been done was very small, and was done in healthy males for a period of one month.
http://www.ncbi.nlm.nih.gov/pubmed/11068941
There are no published safety data on the long term use of melatonin, and no data on its safety in females, the elderly, or the ill, even over short periods. (Note that the bioavailability of orally taken melatonin varies widely, with significantly higher bioavailability in females.) Oral doses of 1.5 to 5 mg, which are typically available in drugstores and food stores, result in serum melatonin concentrations that are approx. 10 to 100 times higher than the usual nighttime peak within one hour after ingestion.

This is a very powerful hormone with activity in most of the major organs in the body. We still know very little about it, or the potential ramifications of using supplemental melatonin for any extended period of time.

The United States is the only developed nation that does not regulate melatonin. In other countries, melatonin is sold by prescription only, and for limited indications only, because of its complex hormone and neurotransmitter activity.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Linda Dianne

fluffy I have you in my prays I know how hard it is. I care for husabnd too and he is in stage 5 to 6. I will ask God to please help you and get you the help you need. God bless you sweetie.
Jim I agree we all do need that. I pray that it will happen soon for so many here. Cause it is to hard to be the only one caring for our love one. May God help us all. Your sis in alz Linda Dianne
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: JAB

quote:
I will consider your advice about spending down though, Dot, for my question on another thread.

Do not begin spending down on anything, for anything, without consulting a qualified attorney.

Timing is of the essence.

My understanding of the basics is below ... subject to correction by Morgan. Big Grin

The "benchmark" for the joint assets you and your husband own is the countable assets you have after your husband has been in a facility (hospital, nursing home, hospice in-patient) continuously for 30 days. This countable period may be years before Medicaid is applied for. Since your share of the joint assets is calculated based on the amount of assets at the "benchmark", you want to have maximum joint assets at that time. I.e., you would not want to begin spending down before then.

There are a number of ways to get assets out of the "countable" column, so they are never looked at by Medicaid. For example, in some states, some assets can be protected by placing them in a special type of annuity. Also, Medicaid will not consider a 401(k) or a pension as a countable asset unless they are in accounts that could be liquidated. If they are drawing an income stream that cannot be changed, then they won't be taken.

It is my understanding that "stuff" is not considered to be an asset, either. So if you had, say, a valuable stamp collection, it would not be counted as an asset at the time the "benchmark" is calculated, but could be sold after your husband was approved for Medicaid and used as you saw fit. If sold before he was approved, then the money would be a joint asset.

A spend-down, if any, should not start until after your husband is placed. There are many things that the spend-down can be spent on, including fixing up the house, buying a new car, clothing and medical supplies for your husband, etc. Again, these are things to be discussed with the attorney.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: DLMifm

quote:
Originally posted by lurk:
Well, maybe the home ownership makes the difference. When my Mom passed, Medicaid took their fair share from the sale of her home. I believe in paying for our own needs, but my sisters and brothers needed that money so much that I felt badly for the decrease


I'll bet they didn't have an estate plan from an elder affairs attorney. This is a prime example of the need for early action and help from a attorney who understands the Medicaid world. Handling one's estate by the rules is fair. We file our taxes following the rules, protecting the sale of a home and income is fair.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Fluffy

Pompano- How would divorcing a 94 yr. old man look? His three children would have a field day with that. I am not contemplating divorce. Not after 38 yrs.
It's just hard for me to jump at everything he wants due to my own physical problems.
Since writing this post I have put him back in day care 3 times a week. I have to take hium inthe morning because I never know how longn it will take me to get him ready but they bring him home around 4:30. Says he doesn't like it, too many old people around(lol). I thinkj it's because he doesn't have me to do everything for him. He is so attached to me it isn't funny.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Pompano

Would divorce be a viable option? Financially, you may be better off and protected.

Divorced, if you do not want the heavy responsibility of caregiver/power of attorney, a guardian will be appointed.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: DLMifm

quote:
Originally posted by flowerlady:
So I need to know other than meds which I do take, how do I let things just slide off my back?
<><>
I have trouble letting things go. I find comfort food helps (yes I am gaining weight) or drinking coffee. My wife is usually sitting on the sofa with one question after another. I go over and sit beside her, hold her hand, and let the questions flow. Excuse my self and bring back a couple of glasses of cranberry juice.
<><>

My husband is not out of it so is not like he would have a companion or sitter or whatever.
<><><>
the local JFservices has a friendly visitor program. I have a young college age woman who comes to visit. She's going for a grad degree and we're part of her studies <g> so there is no issue about having a sitter. JFS said the men volunteers than women. They do extensive screening and a good background check.

One day each week I have a lady from HomeInstead who comes for an afternoon (gives me time to get out..) My explanation is I am so behind I need help. Of course they spend time chatting, reminiscing and playing games. DW understands that I need help with house things so there is no push back.
<><><>
I surely need the support.

Me Too.


Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: flowerlady

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Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: flowerlady

I am need but already have found some comfort in everyone's posts. My husband is in the early stages of Alzheimers and is already driving me nuts. I am 60 and he is 70. At times I feel that I am being short and maybe not so understanding. He also talks non-stop, if not talking it is whistling, tapping fingers..anyway it is noise either way. Always military channel which I found out repeats programs over and over. All this gets on my last nerve and I wonder if I am not sucking it up now then what is to come in the future. He bless his heart wants to be very close to me at all times. I mean within a few feet. He comes looking for me and is sweet and worried etc. I may have just run in the store but guess it seems I am gone for a long time. He worries like that about me. So I need to know other than meds which I do take, how do I let things just slide off my back? I would like to be able to go and visit other people but now it is difficult. My husband is not out of it so is not like he would have a companion or sitter or whatever. The social worker says these phases pass but I think this is going to be our life for many years. Well will write more later. Am glad to meet everyone. I surely need the support. I live in a very small town and there are no groups etc. here... later..flowerlady
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: JAB

fluffy, she's brand new and trying to figure out how the software works.

And speaking of brand new ... hi, flowerlady, welcome to the forum! Big Grin

The resources Mimi mentioned are very good, and may give you some insight into how to cope with your husband's behaviors. He is indeed "shadowing" and his constant talking/whistling sound like agitation. I thought this article on agitation was pretty good, too:
http://alzheimers.boomja.com/A...gitation-268557.html
...at least, it's good once you wade past the generalized handwaving stuff at the beginning, and get to the part on agitation.

Do talk with your local Alz Assoc and Area Agency on Aging, to find out what programs and services are available. One thing that might be helpful is Adult Day Care (although you'd probably do better to call it something like Senior Activity Center, and maybe even tell your husband they'd like him to help out there...)
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Fluffy

I give up.Maybe I'm dumb but still do not understand what flowerlady meant with her quote, reply, quote,reply post.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Mimi S.

Hi Flowerlady,
Welcome to our group. We're so glad you found us, but sorry for the problems you are facing.
I am hoping that as you learn more about this disease, you'll understand more.
On the web read:

Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience":2
http://www.alzheimercambridge....tia%20Experience.pdf

And Coach Broyle's Playbook:
http://www.alzheimersplaybook.com/assisted

An inexpensive book is: Creating Moments of Joy by Jolene Bradley.

Shadowing is the behavior you are describing. It is a phase and it will pass. Do you know the song, "I have a little shadow"? Try singing it to him when he is close. From what you've said, I do believe he is more in the middle rather than the early stages.
Some of your local agencies may have male caregivers That may work.
Do call your local chapter to see what help they have to offer. Click on chapters, below and follow the links.
Also your local office of the Aging also may have available services.
http://www.n4a.org/about-n4a/?fa=aaa-title-VI

Good luck and do keep reading the posts. .
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by flowerlady:
I may have just run in the store but guess it seems I am gone for a long time. He worries like that about me. So I need to know other than meds which I do take, how do I let things just slide off my back? I would like to be able to go and visit other people but now it is difficult. My husband is not out of it so is not like he would have a companion or sitter or whatever. .flowerlady


Flowerlady, your husband doesn't have to be "out of it" to enjoy having a companion, and it sounds as if he's unhappy when you leave to run errands. I think it's time to find people to come do things with him while you not only run errands, but take some time to be with friends or enjoy some peace and quiet alone. Believe me, this can really help you be patient with him when you're the one "on duty."

Call your state's agency for aging to find out the help available for this. Your church or other religious home may also be able to help. We live in the woods in a very rural area in GA -- not the most "advanced" state (!) -- but I get 27.5 hours of free caregiving every week. Think what you could do in just a few hours of truly free time!

Even if your income is too high to qualify for free care, it's well worth spending some of it to hire someone.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: DLMifm

quote:
Originally posted by Cathy J. M.:
Even if your income is too high to qualify for free care, it's well worth spending some of it to hire someone.


Cathy J. M. YOU ROCK !!!
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: MimiR

I haven't been on here much, but I am relating to much of what you all are sayiung. Let me add one new wrinkle. Try doing all of this AND working full time. I'm 52. My husband is only 66. He had early onset. His disease process is moving very slowly. First mild symptoms showed up about 7 years ago. Probably wouldn't have been recognised except that I have been a nursing home and hosice social worker most of my career so I know the signs.

Now he's only a Stage 4, a late stage 4. I guess I'm much better off than most of you because he still takes care of himself. He can get out, go to the store, or the Senior Center. He can even run the microwave and run the dish washer. He had to retire early. He doesn't have the focus to even last as a Walmart Greeter (no offense meant) He could do various volunteer work in the immediate area, but he has no ability to follow through. Other than make it to lunch and occasional Bingo at the Senior Center, he does nothing that I don't initiate. I am his life. I am his world. He knows I have to go to work, but if I have to work late he starts to call, every 15 or 20 minutes untill I get home. Even if I am setting with a dying patient and their family. I can have him write a note to remind him where I am and not to call. He won't read it ewven if it's near him or clipped in his phone. If I try to take 20 minutes to stop by a store to relax, same thing. He wants me NOW.
His children are out of state and won't do anything, even call. His daughter occ visits 3 or 4 times a year. Only in the evening when I am home. One of my sons is out of state and the other is 30 minutes away but his wife makes my husband very anxious. (And I understand why). He never had close friends. No available extended family except my 80 year old parents who live 70 miles away, but do what they can. I have asked church friends to have their husbands spend time with him. Go out for supper or a Coke. They never do. He canstill talk easily with people. He just repeats stories constantly. But no one will help in that way. It's just me.

He has always taken offense at the whispewr of criticism. Now everything I say offends him. I try to be patient. And I fail. Everything that drives me crazy are exacerbations of things about him that have always driven me crazy. We've been married over 20 years. We always had a loving but tumultous relationship. He constantly was on the edge of emotional abuse because of his neediness and mental issues. He made up for it in good ways, but those have mainly eroded. Now it's like the Alzheimers given his a license to abuse and I just have to take it because "it's the disease". Thank God it isn't physical. And I know I hurt him all the time because I am angry and he doesn't remember what he did to make me angry. But to do anything, even something fun, takes so much pushing to get he and I together and out the door on time that we end up angry all the way there. Even accomplishing house hold tasks are filled with anger and stress. If I say something and my voice has any edge to it at all, because I'm busy or streesed trying to get a task completed, he takes it as anger against him and the tension increases 100fold.

I have to work. The organazation he directed closed many years ago and he couldn't get another job for 2 1/2 years. He did part time stuff for minimum wage but we still ended up in bankruptcy after we used all our savings. We both came into the marriage in deep debt from our first marriages and had just caught up a short time before he lost his job, so the savings was slim. When he got a job it wasn't high paying but we were making it. When we were beginning to see the light at the end, his symptoms began and he actually lost 3 more jobs due to cognitive problems while I tried to convince doctors he needed Aricept. That finally worked and he kept his last job for almost 3 years before the disease made working impossible. So I work. And I will die working. I don't know how we will survive when he can't stay alone anymore, but doesn't yet qualify for nursing home.

Now is horrible. The future is far worse. I'm only 52 and my life is over. Antidepressants and counseling can only do so much. Yes, I pray, and pray, and pray, only now I don't even know what to pray for.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: Jazzythecat

quote:
Originally posted by fluffy:
Pompano- How would divorcing a 94 yr. old man look? His three children would have a field day with that. I am not contemplating divorce. Not after 38 yrs.
It's just hard for me to jump at everything he wants due to my own physical problems.
Since writing this post I have put him back in day care 3 times a week. I have to take hium inthe morning because I never know how longn it will take me to get him ready but they bring him home around 4:30. Says he doesn't like it, too many old people around(lol). I thinkj it's because he doesn't have me to do everything for him. He is so attached to me it isn't funny.


Divorce is sometimes necessary in order for one spouse to receive the medical help they need without driving the other spouse into the poor house.

The courts see these things all the time. While this choice can be morally and ethically unappealing, it does at times provide the right financial solution.

The couple can still live together as pseudo husband and wife.

Does it suck to have to choose that?!?! Yup, but it beats being broke and homeless.

Consult an elder care lawyer...they know how to fix these financial problems.
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: flowerlady

Hello again, Yes I was indeed trying to figure out your forum. It is abit different than one that I used to write to. So bear with me awhile. I am so glad to be here.
sometimes I think maybe I am not on the money with what I observe but when I read the posts I see our situation is so typical.
The Dr. put my hubby on a low dose of Klonopin and that helps but if he has not taken it I can tell the difference. I have so many questions too but will keep writing. So happy to find this site. Our Sr. Center has companions but my husband is not going for that at all. For one thing our state has legalized medical pot. So not everyone would want to sit with him smoking etc. It makes him worse and our Dr. would love to get him to stop but he got approved and is all legal 100% so everyone is different? I am working on that one and hopefully when his permit expires that will be it. So I could argue all day and he also does not want anyone in the house. I am told all of this will pass so am as with other things waiting and waiting. I am little by little getting more tolerate of the behaviors. I probably will talk to the Sr. Center people and just tell them, maybe is not a big deal with the smoking. They probably voted it in too to make it legal. Is worth a shot. I just feel funny about it. I read the article on agitation....was good....I do notice he is most nasty in the morning before eating. Must be hungry etc. he makes his own breakfast but maybe I need to do that for him. Was a good point from the article. He seems to worry alot about food. Will sign off and hope everyone is dealing with this summer heat. Thanks all..love the flowerlady
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: JAB

Mimi, have you looked into Adult Day Care? The fees are often sliding scale, depending on your income. Your local Alz Assoc chapter may have grants available to help pay for something like that. And you could tell him that he's volunteering there.

Was he ever in the Armed Forces? He may be eligible for Aid & Attendance:
http://alzheimers.boomja.com/V...-Programs-49965.html

And there may be a number of other financial assistance programs you could tap into, to help pay for his care. There are some tools and helpful articles on how to find the programs for which your husband is eligible at:
http://alzheimers.boomja.com/F...ssistance-27304.html
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: flowerlady

Mimi..I feel like you are living in my side pocket. I have a hard time also with the verbal abuse. I used to really feel hurt and felt that he could control his mouth and still do think that for some degree. I try to say to myself it is not him but his disease but he looks the same and it does hurt to have your mate tear away at you and make you feel bad. I just agree and in 15 minutes I get praise. This whole illness is just crazy. I do alot of ignoring but it chips away at our marriage. We are now like room-mates, I just cannot mentally feel close to a man who puts me down. Thanks for your post and hang in there, love the flowerlady
Anonymous
Posted: Tuesday, January 17, 2012 4:00 PM
Originally posted by: MimiR

Jab, Thank you for your response. He isn't ready for Adult Day Care yet. He is still safe at home and is better before the sun goes down. He was only in the Reserves so I don't think we will qualify for Aide and Attendant, but I will double check.
Thank you for the articles/sites. I will definatly investigate them.
 
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