I hope no one minds, but I moved her comments and others to her to move out of new members intro so we can continue supporting and helping her.
Hi I am Mitsou. We moved to Nashville not long ago coming for greater Atlanta, GA. (so I only know my road in Nashville and the grocery store, that’s all.) My husband of 51 years has been symptomatic of Alzheimer’s disease since 2006 – did not want to be tested then. When tested in 2009 was found to have Alzheimer’s so it has been more than 11 years now that he has had the disease. He is in stage 7A – hardly speaks or understands anything, very unstable when walking, is very stubborn. I have been his sole caregiver 24/7 from the start and I am exhausted. I have had 2 knee surgeries and cannot walk well yet, so we stay inside the house. Everyone says to go to “support groups” but I don’t know any around here; the Alzheimer’s association has one but only for newly diagnosed patients. It is very lonely as I know absolutely no one here – can go weeks without talking to anyone, cannot drive and leave my husband alone. I only look out the windows days after days. I thought of looking for online support to speak to people who understand what I am going through.
Gourdchipper*8/31/09 21 hours ago Mitsou it's probably not appropriate to say "welcome", but I'm glad you've found us anyhow. When I joined this group back in 2008 there was lots more chatter back and forth than there is now, but there really is still a wealth of information available using the search button at the top of the page (if there is anything that you don't already know after eleven years of caregiving). I finished Georgia Tech in Atlanta a loooooong time ago (1951) and have a great nephew in Nashville, so that almost makes us cousins, doesn't it? My caregiving journey ended nine years ago, but it must have been about like yours -- about ten years from the time we first started noticing things, diagnosis a couple of years later, then a gradual decline over about seven years, and with the last few months under Hospice care, but still here at home. I was very fortunate in having my 52 year old mental health counselor and confirmed bachelor son move back in with us for the last year, allowing me some freedom to do errands and even begin some limited resurrection of my social life instead of being tethered to a baby monitor 24/7. My wife died just days short of our 60th wedding anniversary, and not wishing to be alone, seven months later I remarried -- to the widow of a dear friend since Georgia Tech days and my wife's best friend. Life still isn't a bowl of cherries for us now, with my new wife requiring more and more help as her dry macular degeneration progresses toward blindness, but it still beats being alone. So anyhow, you've found a cousin to talk to here, so I hope you'll come back often.
CO2* 9 hours ago
Mitsu, I am so pleased that you joined our support group here. Believe me these people understand what you are going through because we have been there. You say you are exhausted and we can understand why. It seems to me that you need some help and if there are no support groups near by, please consider calling visiting angels or one of the companies that offers in home care. You need time for yourself or the disease will kill 2 people. Also you might consider calling the Alz hot line that is advertised on their website. Nashville is a large enough city that I am sure they have a chapter of the Alz association there. Tell,them what you need and I am sure they can direct you to where you need to go. This group literally saved my life at the end with my husband. I ended up placing him in assisted living because it was becoming impossible for me. The fact that you go weeks without talking to,people is not good. Remember you are never alone. Come back and tell us how you are doing. God bless you
Mitsou 54 minutes ago Thanks for your replies Gourdchipper and CO2. Aug44 and Elizabeth 9/2/14 answered me on the board Journeys and I am replying to their questions here. I’ll explain more fully our circumstances. My husband retired from a non-profit corporation (with no benefits, no insurance, etc.) in 2005. I had already noticed his short term memory problems. The doctor then said it was just “aging.” In 2007 I took him to a neurologist who wanted to give him a test for Alzheimer’s but he refused. The doctor said my husband had Mild Cognitive Impairment. Since 2005 I had researched to find ways to help him with his memory. Meals included fresh veggies and fruits, fish, and mostly a Mediterranean diet (which was easy since I am from Europe and cook this way.) After the MCI diagnostic I added brain exercises for him, games, and we started traveling more at home and wherever we could afford. I retired in 2008 and we traveled even more then. I took him to the top doctor I could find to be tested. In 2009, after waiting one year we met with the chair of Emory University in Atlanta in brain research, who confirmed that my husband had Alzheimer’s and must have had it for a while. I was optimistic that with everything I did I could slow down his decline. And I did until last summer. The doctor here in Nashville last fall was surprised that he was still doing so well after over 11 or 12 years with the disease. I sustained 3 injuries at work: my ankle and both of my knees. After years arthritis sat in them. Both of my knees were bone on bone and super painful – I had to walk with 2 canes and needed surgery. Surgery was not possible because my husband did not drive anymore and could not take care of us. One of our daughters who lives with her family in a suburb of Nashville suggested that we move to TN and I could have my knee operations in Murfreesboro where she works. She has 4 children from 4 years old to 11 years old and help at home with the children while she and her husband work; the children’s helper could look after my husband. I had a first knee operation last year. My husband had a bad virus at Christmas time and declined quickly. Now he barely speaks, no longer reads, and is very unstable and quite difficult to handle. I had my second knee operation last January. His nephew from California came to help us in our house in Nashville during my therapy as I could not drive but he went back to CA 2 months ago. My husband is a veteran and was in the Army from 1961 to 1967 in active and reserve duties. I spent many days filling VA paperwork to see if they could help him, either by sharing the cost of an assisted living place or giving us the opportunity of getting a VA discount in a secured place. Last Thursday they replied that no, they would not even enter him in their system because laws changed in 2003. If he had been in the system then, he still would be. Now financial reasons came first and we were over the threshold, not because of his finances (he has hardly any savings, no retirement just SS) but because of mine. I get a pension from the corporation I worked for during 26 years. So that’s when I became very depressed and kept crying as I had counted on the VA to help him. After 12 years of constant battling Alzheimer’s I am exhausted, plus I miss friends, going outdoors, eating out once in a while or traveling. Our last trip was for the wedding of our other daughter in California 2 years ago. In the meantime our TN daughter (we have not seen them in over a month) sold her house and while waiting for alterations to the house they are moving into, they left TN until the end of June. I am usually optimistic by nature but have been more depressed for the last few days. I’ll get back to doing some research to see what is available around here. I found several day care places but none of them could accept my husband as they told me he was past that stage – too far gone. Thank you for reading this long entry.
Yes, the VA can be frustrating. My husband gets his medical through the VA and they pay for his day care. But unless you are service connected disabled, they do not pay or help pay for nursing home placement. Here they won't even help find a place. If I still lived in the Portland,OR area (or other big metro area) they do have places contracted from the state that they could try.
You story of moving to be near kids with the expectations of help then it not happening because they are busy with their own lives, is all too common. There are many here who have moved and then missed all their old friends.
Have you tried 'Aging and Long Term Care' for help? They are the ones that originally paid for my husband to go to day care (through the county), then the VA took over. The VA pays for 3 days, Aging will pay for 2 days but I only use 1 day for a total of 4 days of 6 hours of respite. As for too far gone, I don't get that. There are ones at my husband's day care that are worse than him.
For length of time, it can vary so much. There have been spouses who have survive only a couple years and those into the teens. My FIL lived about 25 years, my SIL 9 years. My husband who is 70 was diagnosed in 2008 but like most there were signs earlier, is still going. The last year and a half he seems to have gone downhill the fastest. But, he is still physically healthy - just is brain is sick.
Will you be self pay for placement or depend on Medicaid? We will depend on Medicaid. I just sent the initial papers back. I don't know the process to get approved before placement but sure I will find out. After 10+ years I too am exhausted. Many here placed their spouse while waiting for Medicaid approval.
For support groups places to call: Memory Care facilities, nursing homes, here the major hospitals neurology has the caregiver support groups. Even if you can't find one specific to Alzheimer's, a caregiver support group is a start. I found the one here all the caregivers are either caring for someone with dementia or Parkinson's.
Hi Mitsou, Welcome to the site. I feel for you and sympathize with what you are going through. My husband had Alzheimer’s for 10 years. I took care of him at home for 7 years and he was in long-term care for 3 years. He died a year ago last March. I needed help badly because except for his brain, my husband was in great physical shape and I could not keep up with him. Like you, I have knee problems. When he was at home, I had him on a GPS tracking system that I attached to his belt and I had a home health aide for 6 hours per week to keep him company so I could have a break. I paid for that myself. In addition, during his last two years at home, he went to day care 3 days per week and another aide came in periodically to give me a break. These last two items were paid for by the VA.
I’m describing this because I think your husband may be eligible for VA health benefits. The VA has different kinds of benefits: one kind is health benefits; another is disability benefits; another is Aid and Attendance; and I think there are others. If your husband was active duty, I would be surprised if he is not eligible for health benefits. There is no means test for VA health benefits, so your pension would not be factor. The VA health benefit will not pay for or long-term care, but it will pay for adult day care and probably for an aide to provide periodic respite for you. Here is a description of the requirements for health benefits:
Hello Mitsou and welcome to our family. I have a friend who lives just south of Nashville and works in a.hospital there. Her Mother was in a AARP assisted living place in that area that was really nice. I will ask where it was and if her Mom went to a nuraing home there. I am on the way to the VA this morning so will write more later. You.said your hb was.Army around 1967 but.was denied VA.benefits. Was he "in country"? I assume not since he was denied, but don't know exactly what you applied for. There is a.recent change if a vet was in Thailand or some neighboring countries. Do you know.where he was stationed? Gotta go. More later.
Just thinking about the VA benefits. Have you talked to a VA social worker to make sure, Mitsou? He might be eligible for some things but not eligible for others.
I am one of the ones who moved out-of-state to be closer to family. It worked well in terms of getting my husband and also my mother taken care of--neither ever had to be placed. They were both the types who never would have adjusted to placement, so the extended family took care of them both in their homes. Later, after they both had died in the same year of 2014, I found my own family support for me crumbled, as my DD divorced s-i-l and moved away--selling the house I had purchased for her and using it to buy into a very upscale town. (Where I couldn't afford to live even if I wanted to.) I moved back to my original state and got an apartment--am much happier here, although I'm still going to need to sell my house out-of-state. (Have been laid up with pneumonia, so couldn't go down and get it on the market as soon as I wanted to.) The cost of living is much higher here, and I'll never get the money back that I put into my little house in the Heartland, but there is a lot to be said for just plain happiness--my friends here care much more about me than my remaining family does, and in terms of activities and interests, I am just so much more hooked in up here. The situation between DD and ex s-i-l is extremely toxic, and I am more comfortable being well out of the way. Also, my husband did die in our little house in the Heartland, but he is interred up here (NY), so it is nice to be able to go to the cemetery whenever I want. In terms of my three grandchildren down there, I was fortunate enough to have a huge role in caring for them and raising them, but of course the divorce and moving away really curtailed my relationship with them. They really are not being raised with a culture and values I can relate to, and of course are always with one parent or the other because of court-ordered visitation...so as the grandma, I am left out of the mix. They are in top-notch schools with truly excellent after-school care programs...so I can only cross my fingers and pray a lot...and probably plan to catch up with them and renew our relationships when they are older...if they are interested. (I think the only real way to get a kid interested in you is to turn yourself into an iPhone, iPad, or computer game. lol)
Thank you all for your replies and links. I have not researched much around here because we have only been in Nashville full time since mid-April and I had to keep doing my knee therapy until about a couple of weeks ago. We still have our house in GA because it has 41 years of accumulation which had hardly been touched before we came to TN. I went back when our daughter’s kid help could keep my husband but I could only bring back several bags of stuff. I need to get back to GA to sort out, clean out, give away before even the furniture movers can come – we have just boxes in Nashville and a couple of pieces of furniture. It will be a while before I can place the GA house on the market; meanwhile the VA considers it a “second residence.” I’ll try to research the VA sites you forwarded but frankly don’t have much hope of getting help that way. Because I don’t know Nashville at all, apart from a couple of streets, I just called an adult day care close to us, near Vanderbilt University. I’ll try several others, but at this point it is almost impossible to get my husband to get into the car. He is 6 ft 1 and still very strong. If I try to lead him where he does not want to go I avoid to be close to him or he would strike me out of his way and I may fall (this has happened before in our back yard in GA where I stayed on the ground for over 3 hours! So I am careful now.) The doctor is signing him for “hospice care” even though we don’t know how far he has. They said that since he has an incurable disease he can be on hospice. He was in the Army, as an MP, in Yuma Arizona from 1961 to 63 I think, then in the reserve in San Francisco, CA. where I met him. I was there traveling and working for a couple of years before returning home to Paris, France. I am now a US citizen but still a French citizen.
I have to go and empty all the bags I brought from GA. Thanks again for your answers.
He was probably denied medical because one requirement is they had to spend one day in a war zone - sounds like he didn't. Now if he retired from the reserves, then that might change things. I would definitely contact the VFW - they usually have guys that know how to search for help and get through red tape. And yes, the second residence would probably also make you ineligible. As for getting him to day care I wonder if you arranged for a bus to pick him up if that would work, but then you would still have to get him out of the door. I guess the other option is to have someone come into the home so you can get out. It is so nice to do shopping without my hb.
Check this site out associated with Vanderbilt https://www.vanderbilt.edu/child-family-center/services/caregiver-support.php
Here is the basic post: Caregiver Support Group Do you provide some degree of care to a family member or loved one? Do you feel stressed out or isolated due to your caregiving situation? Would you like to learn more about community resources available to help caregivers? If you answered “yes” to any of these questions, the Family Resource Center Caregiver Support Group is for you.
A support group allows people to share information and openly discuss their problems without judgment, to process their feelings, and to hear others talk about their situations. Participation can help people deal more effectively with their problems. The main thing support groups provide is the feeling that you are not alone.
Meetings are held the second Wednesday of every month from noon to 1:00 p.m. in Medical Center East. To get more information contact Stacey Bonner at 936-1990 or email her at stacey.l.bonner@vanderbilt.edu. Please feel free to bring your lunch to the meetings. No RSVP required.
06/13/2018 — 12:00 p.m. Caregiver Support Group 07/11/2018 — 12:00 p.m. Caregiver Support Group
"The Alzheimer’s Association offers 13 different support groups for the city of Nashville, with special programs for those with Dementia and Younger-Onset Alzheimer’s." So I would call them since they don't list them on their website.
Charlotte and bhv, Where did you get the info about spending at least one day in a war zone, or having been "in country," or being ineligible due to having a second residence? None of those conditions was relevant when my husband applied for basic VA health benefits.
Here is information from the VA website:
Veterans Eligibility: For the purposes of VA health benefits and services, a person who served in the active military service and who was discharged or released under conditions other than dishonorable is a Veteran.
Basic Eligibility: If you served in the active military service and were separated under any condition other than dishonorable, you may qualify for VA health care benefits. Current and former members of the Reserves or National Guard who were called to active duty by a federal order and completed the full period for which they were called or ordered to active duty may be eligible for VA health benefits as well. (Reserves or National Guard members with active duty for training purposes only do not meet the basic eligibility requirement.)
Minimum Duty Requirements: Most Veterans who enlisted after September 7, 1980, or entered active duty after October 16, 1981, must have served 24 continuous months or the full period for which they were called to active duty in order to be eligible. This minimum duty requirement may not apply to Veterans who were discharged for a disability incurred or aggravated in the line of duty, for a hardship or “early out,” or those who served prior to September 7, 1980. Since there are a number of other exceptions to the minimum duty requirements, VA encourages all Veterans to apply so that we may determine their enrollment eligibility.
Mitsou, What I'm wondering is if your husband was turned down because he was applying for a higher level of benefit than the basic health benefits. Elizabeth's suggestion about asking to talk to a VA social worker is a good one. It looks like there is a VA office in Nashville (615) 736-2841 and one in Murfreesboro (615) 849-3450.
those requirements apply to those who enlisted after Sept 7, 1980. My husband enlisted in 1967. I can only tell you our experience which was that my husband had to have served one day in a combat zone which he met by his ship being off the coast of Nam. These are other requirements:
You were discharged or separated for medical reasons, early out, or hardship You served in theater of combat operations within the past 5 years You were discharged from the military because of a disability (not preexisting) You are a former Prisoner of War You received a Purple Heart Medal You receive VA pension or disability benefits You receive state Medicaid benefits Served in the Republic of Vietnam from January 9, 1962 to May 7, 1975 Served in the Persian Gulf from August 2, 1990 to November 11, 1998
But also a lot has to do with income limits. Annual Income Limits - Health Benefits Based on Income Year 2017 Veteran with: VA National Income Threshold 0 dependents $32,715 or less 1 dependents $39,259 or less 2 dependents $41,509 or less
But it is best to not depend just on factors but apply and get the whole picture. Like all government programs there are loads of red tape and rules.
Charlotte, You're right about the red tape. Yes, those standards apply to more recent enlistees. (My husband enlisted in 1948, so they did not apply to him!) They are also used to place vets in "priority groups," which determine what kind of care is offered and at what cost. My husband did not get his regular health care from the VA and our finances would have made him ineligible for free VA health care. However, he was still eligible for the basic VA health care benefit, which comes with the Home and Community Based Services. We had to pay a $15 per day co-pay for the day care. The daily cost was $75, so we save $60 per day, or 180 per week, which was huge to us.
I also think that the availability of benefits might depend on how much Congress appropriates each year for the VA. My husband did not apply for the VA health care benefit before 2003 (it was more like 2012) but it could be that there was more money appropriated then so they did not apply stricter standards. It might be worth it for Mitsou to double-check with her local office, though.
What a mess our system is! There ought to be some kind of help for dementia sufferers and their caregivers whether they are vets or not.
Here the VA offers classes for caregivers but they are in Walla Walla where their main VA facilities are, 1 1/2 hours away. So it also depends on where you are located as to what is available nearby.
I think what we all agree on is she needs to find a VA advocate (one not paid for by the VA) that will explore any options she might qualify for even if assistance in paying like you did.
I have read all your replies and will start calling the numbers you gave me, for the VA social worker and also support groups. I did not realize that for the last several years my husband would hide many things; he hid them between magazines, ad brochures, Macy’s pubs, etc. I could not find his military release papers for a long time and last time found his original DD form 214 Discharge between two grocery ad papers – which is why I have to go through everything in GA carefully. My husband was drafted in 1961 and was active in Yuma, AZ for two years – until 1963. Then he was in the Reserve until 1967 when he went to monthly week-end meetings and finally went a couple of weeks somewhere in CA. From what I understood to be eligible for any VA benefits he had to have been in the Army during a war, like the Vietnam War, even if he did not see combat. He told me several of his comrades were sent to Vietnam but they needed him in AZ for Mexican border duties. I think that we did apply for VA benefit at the Murfreesboro VA Nursing Home, and that could be for the higher benefits only, I am not sure. So now I’ll make some phone calls and see if he can get benefits in other areas of the VA as you suggested. I am not sure what Tennessee has to offer since we just moved here. I did see on a 2017 report ranking nursing homes by states that Georgia was no. 3 least expensive and Tennessee no. 29. Anyway thanks for all the leads.
Mitsou, If it turns out that you can't get any help from the VA, maybe you could hire someone to come in for a few hours a week as a companion for your husband, just to give you a break. It sounds like you have a huge amount of work to do, with caring for your husband and trying to pack up a house in another state. I don't know how you do it all!
"I also think that the availability of benefits might depend on how much Congress appropriates each year for the VA." Very true. My wife used to work for an organization that fought for veteran rights. Her boss used to work for the VA. So I heard stories about the VA illegally giving partial benefits instead of full benefits. While wrong on the VA's part, it stems from the VA always being underfunded.
I'm wondering, too, Mitsou if you are considering moving back to Georgia, since the family support in Tennessee is not there anymore. Would that be an option, or have you decided for sure to stay in TN? Would you have more support in Georgia?
Here's a real off-the-wall thought: Do you have any family in France? Would moving back there make any sense? They have good health care over there, from all I've read. (I know...probably a crazy idea.)
I don't have anything to add re VA. Here in CA, the Office on Aging offers respite for you to go to their support groups and classes. They hire someone to go to your house to be with your spouse while you go to the support group. Sometimes they will provide transportation for you if you can't drive. I think it was two summers ago I went to their 12 week series of classes called Care Pathways. They would have provided respite and transportation if I had needed it. That was a.wonderful.series of classes. Much more valuable than the online course of the same name. One session was a presentation by an eldercare lawyer. That was priceless.
to Elizabeth 9/2/14 and Aug44 – Yes I thought of going back to France but it is no longer possible. I came to the US in 1961 and only went back often to visit my parents in Paris. I never worked there again (had only worked a couple of years in Paris.) I could have re-joined the French social security when I was maybe 50 or so by paying a large amount, but I did not because my French family was not large. My mother was an only child (so no aunts, uncles, cousins) and my father was an Armenian who had come from Turkey where most of his family had passed away. He had just one sister who had moved to Cairo, Egypt and she is long gone. I have daughters here with sons-in-law, 4 small grandchildren and 3 step grandchildren, so we would be quite alone in France. I wish we had gone back earlier though. When I came to San Francisco in the 60s everything seemed so nice and friendly, but it has evolved and, unfortunately I still have an accent. I have had bad events happen to me because of it, things like “why don’t you go back to your f**g country” (even though I lived here most of my life and am a citizen) have had my car keyed and many mean things too. The US is not as friendly as it used to be and they sure don’t like foreigners! (Which always surprises me since apart from the Native Americans, everyone came from somewhere else.) I was reading yesterday that 36 countries have better healthcare than the US (unless you are very rich) even Morocco was ahead. France was no. 1. It could also be that in most countries healthcare is non-profit and there are not so many insurance companies involved. I don’t think that it will change here, at least not in my life time. As for Georgia, we moved here because both our daughters had moved away and many of our friends too, or passed away, only acquaintances were left. Plus we lived in a county among pine trees, near a highway (we had to drive to our closest neighbor, behind a lake and she too had Alzheimer and passed away) not a town, not even a suburb or subdivision type but in Nashville we are in a city with people around, even if I don’t know any of them. On the plus side, the Hospice lady who came and washed my husband today said she knows a lady who sits with some of her patients and she will ask her if she would be available to come and stay here some afternoons.
I am sorry about the rudeness and outright mean that you have encountered. It always surprises me when I hear stories like yours. We give people from the south a bad time about their accent (only if I know them), but never in a cruel way.This country is such a melting pot for people from other places, I still can't believe the cruelty.
I am glad the hospice lady was open and encouraging with you. I do hope that lady will come in and relieve you. At first she might be someone else to talk with until your husband is a little more comfy with her. Maybe the hospice lady can help you get connected up with support.
I know when my respite worker come my husband is mad the whole time I am gone but too bad. Hospice/Chaplaincy opened a thrift store in town. Now I have a worthy place to take my good stuff to. I took in 4 bags of clothes today. I say worthy because the proceeds will go to something good. I am sorry, but I hate to give to Goodwill.
This afternoon I have spent much time talking to various VA offices. The VA social worker told me to call the VA Business Office. I did and they said that because of the changes in the law in 2003 they only look at the finances first and nothing else. It the VA and his/her dependents are over the yearly base limit, even by just a few dollars, they won’t even consider any help of any kind. Final. I talked to several people there and the last one was very nice. He told me he was just a VA clerk but was very upset because he used to be a recruiting agent telling recruits that the VA would take care of its veterans forever and it is not true. He said he felt bad about it when it is people like us that are just above the threshold but don’t have enough money to pay out of pocket for a nursing home. At least I tried.
Sorry that nothing positive came out of it. Next might be to try Aging and Long Term Care. They are who I went through at first to get him into day care.
I hate this disease -not only what it does to the person with it, but to their spouse and their finances or lack of ability to get much needed help.
Mitsou, I am so very sorry you have had such bad experiences in the USA. I find that the people who are so horribly cruel are simply ignorant in many, many senses of the word.
I am also sorry about the VA, and yes, you should feel good that you tried. If you belong to a church or support group, perhaps you could find some help even if it's just a few prepared meals to take away some of the work responsibilities or provide some musical therapy to lighten the mood. Through this journey, I have realized that our society is not capable of providing much help through the agony of alzheimer's so we must take care of ourselves, try to keep our chins up, and look everywhere we can for support.
Mitsou, I am so sorry you could not get any help from the VA. I hope the lady suggested by hospice will be able to help you.
As for the people who have been so mean to you, that makes me so angry. What ever happened to respect for other people? And common courtesy? Even if people are not inclined to be friendly, they should keep a civil tongue in their head. I did not realize how upset I was about our society's general rudeness until I looked at the internet on Saturday and saw the pictures of the royal wedding. I normally have no interest in celebrities or the British royal family, but seeing all those people being so gracious and welcoming and respectful to each other was like a breath of fresh air.
Mitsou, that infuriates me to hear that you have been treated badly because you have an accent. As you said, unless we are Native Americans, every single person in this country is from somewhere else--or else their parents or grandparents or great-grands were. My grandmother came here in 1907 when she was 13, and she lost her English accent as fast as she could, because the other young people laughed at her and called her a "greenhorn." Can you imagine? Mean teasing because she had a British accent.
Anyway, I think your next step is to talk to your local Office for Aging. (It may have some different name--Area Agency for Aging, or whatever.) It will be one of the county agencies. See if you can get somebody to come out and talk with you and do an assessment of your situation--if nothing else, they should be able to tell you what is available in your area--what he might be eligible for--give you lists of daycares, assisted livings, home care agencies. Some may have lists of people who will provide help privately. You need to get hooked in to "the system" in your area. And there is probably a local Alzheimers Association, too--check that out.
Charlotte, I checked the VA Aging and Long Term Care as you suggested. The VA site says “These benefits are paid in addition to monthly pension, and they are not paid without eligibility to Pension.” I re-checked the requirements for pension, and as I stated yesterday they look at the finances first. To be eligible the site says “The veteran household cannot have income exceeding the Maximum Allowable Pension Rate-- MAPR -- for that veteran's Pension income category. “ The MAPR is
Maximum Annual Pension Rate (MAPR) Category Amount If you are a veteran... Your yearly income must be less than... Without Spouse or Child $13,166 With One Dependent $17,241
Or $1,436.75 a month for a family of two. We are over that. I think going to the VA for any help is a non-starter.
Aging and Long Term Care is completely separate from the VA.
They are the ones that first authorized and got him in to day care to give me respite. This is a brief description: We serve seniors and vulnerable adults with chronic illnesses or disabilities. Aging and long term care services support caregivers. Home delivered meals and transportation are just a few of the senior services that enhance the quality of an individual's life.
This site seems to be what it is called in Nashville:
The Hospice lady gave me the name of the sitter she knows. I called her and she told me that since she lives 50 miles away from Nashville, she would only come and sit for my husband if she could stay 10 hours minimum, and gave me her rate. I have to think about that.
My problem with him is that he is so extremely slow and stubborn. For example this is a standard day: at 8:30 am I ask him to come to breakfast. He usually stays in bed, awake, or sits in an armchair and refuses to move – from 45 minutes to 2 hours. Today he did not want to move until noon (so that would make it hard to take him to a day care.) Then I give him breakfast or lunch and he looks at it maybe for ½ hour or more then eats, slowly (doesn’t speak.) Then he plays with old calendar pictures of cats for several hours in an armchair in the kitchen, and refuses to move. If he suddenly gets up, and stumbles, it means he has to go to the toilet and he forgets where it is, so I have to be close by or he has an accident. In the evening it takes me sometimes almost one hour to have him move from the armchair to the chair by the table to eat (I have to do that or he would drop all his food in the arm chair.) Then about 1 hour or more to eat (and he mixes all his food into a big ugly blob.) I have to watch him as he likes to throw his glass on the floor (like a toddler.). I bought a plastic glass with a screw top, but he figured out how to unscrew it and still throws the liquid on the floor, and with my knee surgery it is hard to bend down and pick up the liquid. When it is time to leave the kitchen for him to go to bed it is terribly slow. I coax him, ask him to come and he does not answer or move. Yesterday was not too bad as I started at 8:30 pm and he finally decided to move at 10 pm. By then of course I was exhausted. The longest it has taken was a while back, coaxing to move him to bed from 8:30 pm and he went at 2:30 am! If I take his arm to try to get him to move he is not pleased and try to strike me so I don’t try. He is still very strong and at 6’ 1 for my 5’3 I cannot do much. It seems I spend all my hours waiting for him to do something. I get to the point I don’t want to do anything either when he is finally in bed, but just stare. Anyone had that problem? He does not ask for anything or says more than 4 or 5 words per day, just looks around or dozes. However, every time he sneezes he says “sorry.” That’s it.
My computer has been my salvation/escape. I do a game called Cross Stitch World - basically you color by letters in 'x' like in cross stitch. I spend way to much time on it but it is relaxing and escaping.
I forgot to mention that he does not want to get into the car. Has not been in a car for over a month. I would have to get a couple of strong men to move him, so that is the other reason I can’t get him in a day care. He has had Alzheimer’s for over 11 years now and it shows.
Ten hours is a lot to pay for and it seems much too long a time, anyway. The only reason for you called this particular woman is that the hospice worker knows her. Nashville is a big city - probably at least 3x bigger than the metro area where I live - so I'm sure there are other people willing to work for several hours per day. You would definitely be able to get someone through an agency, although it would be more expensive than hiring someone directly. Does the state or city have any senior services organizations that can give you some names? Or you can call the Alzheimer's Association for some suggestions.
It has been so hectic. I’ll try to explain clearly. Everything was the same at home until the day after Memorial Day. When I got up that morning DH was sitting in the bathroom and said he could not move because his foot was hurting. The foot was swollen and I don’t know how it happened. I gave him my cane and after much coaxing he finally moved slowly to his bed, which is upstairs. He did not want/could not get down the stairs. Because of my knee operations I have to hold on the rails and could not bring him a tray of food upstairs. It was the hospice nurse’s day. She said we needed to place him somewhere for his safety and mine. She found a room for him at their hospice respite care for 5 days and told me I should use that time to find a place for him. I made many phone calls and finally found an assisted living with a secure memory care unit about 20 miles south of us. They had a place for him and I negotiated a price, much lower than the going rate in Nashville. Five days later I moved him from the respite care to the AL, that was Sunday June 3rd. That same evening I received a picture from my across the street neighbor in Georgia showing that a tree had fallen on our roof. On Monday and Tuesday I had to go back to the AL to sign paperwork with them and with the hospice. On Wednesday I left for GA. We have mostly pine trees on our wooded approx 1 acre lot but several small oaks and one black walnut tree, my DH cherished tree. When I arrived in GA I realized that his black walnut tree was the one that had been uprooted the same day he was placed in the AL – strange coincidence. He had planted a shoot from a good friend about 30 years ago and the black walnut tree had grown well. DH loved this tree, watered it, read under it, etc. I had to get a tree removal service, then the house insurance adjuster, then 3 different estimates to replace the roof. But I wanted to return to TN on Sat. June 16 because the 17th was our 51st wedding anniversary. I did and visited DH on Sunday 17th. He had adjusted well to the AL, did not seem to care where he was, barely looked up at me, kept playing with a look-alike cat they provided for him. Now I have to decide on a roofer, find out when they can do the work and return to GA for that. I’ll write more below.
As I wrote above I returned to TN last Saturday, June 16. I visited him on the 17th for our 51st anniversary, then again last Tuesday and again this afternoon. His foot is OK and he can walk. The AL said I could bring pictures for him and prints to place on his wall. Yesterday I tried to select some photos but it was too hard looking at these pictures before his illness and I kept breaking down. I just took one photo today. My name was on the back. DH looked at the name and could barely read it. When I asked him who that was, he did not know. I asked him then who he thought I was, he did not know that either.
I started taking pictures when I was a teenager and really enjoyed it. When we found out that DH had been diagnosed with AL we tried to travel as much as we could. I took pictures all the time and have thousands of them. Even if it was just in our area, I would find places we had not seen, or just go on top of a mountain park nearby or different state parks. There was not a week that we did not go somewhere. I have all those pictures on my computer. Looking at these pictures to decide which ones to have printed was more that I could endure – there he was in the photos looking at me, and I knew he never would look at me this way again. In 1963 I met him when I was 23 and him 25 years old. I was supposed to return home to Paris but I lived with him for 2 years and finally we decided to get married in 1967. So I have lived with this man for 53 years and known him for 55. How can I live now alone when I have been with him for over half a century? I am in this house here in TN where I know no one. Boxes are all around not opened, hardly any furniture. The house in GA is also full of boxes. Because of the storm, water came into the den and the carpet got mildewed – it smelled badly. Two houses and not a single comfortable home. I know he will not come back to either now. I just go from empty room to empty room and if I find a place to sit down, I do and stare. I can’t go even on the porch as I keep crying. Will this pass? I thought it would be so good if I was free to be alone for a while and now that I am I don’t know how to handle it.
Oh Mitsou. When it rains, it pours. My thoughts and prayers are with you. Have you been able to find friends or a support group that you can share with? I'm so glad that you have the people on this site to share your story with. We will continue to support you as best we can. The one good thing is that your husband is adjusting to his new setting. That can allow you to concentrate on your house. Good that your neighbor let you know.
Oh no--much too much going on. Here is the knotted rope, Mitsou. Just hold on to the end of it and keep on holding on. The rest of us are on the other end, holding on to you. We are here for you, and you are not alone. Please keep us updated if you can. x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----x-----
I am so sorry for the damage to your home in Georgia. I do hope nothing precious was destroyed. My heart goes out for the 'empty' homes you have - where neither one feels like home right now.
Happy to hear he is placed and seems to adjusted well. Thank goodness you had the respite place for him to stay while you found a permanent place. Unfortunately too often it is a medical crisis that forces us into finding a place quickly but often not the best place. It sounds like you were fortunate to find a good place.
Now take care of yourself. Maybe go on auto pilot taking care of the house in GA and the one there. A suggestion: if you don't plan to move back to Georgia, take a trip and pack only the keepsakes. For the rest hire an 'estate sale' company to get rid of the rest. After my sister died - who was a collector of many things, they hired one who advertised it as a 'hoarder's sale'. I never considered her a hoarder! They had a great turnout for a one day sale. The rest was either hauled off to the dump or by Goodwill. It only took a couple weeks to sell the house. Maybe when your daughter returns the end of the month, she will help you decide. Maybe if you want to stay in TN, her new house will have a room you can live in at least until you decide for sure what you want to do, rent a storage unit to store your stuff and sell the house. Sounds like you have stairs which are not safe for you with your knees anyway.
Hi Mitsou, What a mess! This experience would be a challenge even if your husband did not have Alz. I admire you for keeping your sanity through this. I don't think you should worry about the photos, especially since he doesn't recognize anything in them. Just put up some generic decorative pictures that you think he might like. You can always replace them later.
Someone at group last night mentioned as an alternative to family pictures, find a book with pictures of something they liked to do. The person he was talking to was a woman caring for he dad who evidently spent much of his career going to Antarctica.
Thank you all for your replies and suggestions. I’ll answer your questions – no, I did not find a support group as I was so busy with DH, and right now I try to drive to his AL every other day ( 20 miles south on the freeway) and the other day I deal with all the rest. I do not know Nashville, just the grocery store and drug store nearby because I was always at home with him. It is a large city and not easy to figure out where everything is while driving through traffic. At least in GA I know where to go and that is a comfort, it is also very pretty, a couple of large lakes close to the house as well as a small mountain and battlefield park. DH hid so many things in the GA house that I need to check it well. I made some type of collage for his wall out of old pictures. He also has the one’ cat a day’ calendar and keeps looking at all the cats. The AL gave him 2 cats that look alive, that are made for elders with dementia.
It is so very quiet in this house. I don’t know a single person here so no one will show up. When I came back from GA my cat sitter had brought in 2 large boxes but they were for the next door neighbors. It is a couple with 2 young children (and I think another one on the way. ) I could not carry the boxes so I knocked on their door and the husband came and said “WHAT IS IT?” like if I were a salesperson. I told him about the packages and he quickly walked into my house in front of me and found the packages inside before I came inside as well. As he was leaving I said that I was sorry I did not know how long they had been here since I had been in GA taking care of a tree that fell on my roof. He turned and gave me a look like “don’t want to hear about it” so I added if he would give me his phone number next time I could leave a message and not disturb him, he replied “sure, sure” and went into his house. (I was told he is a doctor at Vanderbilt University.) So much for friendly neighbors! I had met his wife earlier and told her my husband had Alzheimer as she was asking him a question. The next time we were out and my husband was waving at her boys she rushed them inside and said “quick, get inside the house” as if Alzheimer was contagious. Don’t know what happened to Southern hospitality? I don’t have any family here either, except for my daughter’s family (and they are out of the country on vacation.) I called the roofer that I selected (because he sounded professional, a small family business for 20 years) but found out he had a car accident this week and will be back at work soon, so I don’t know when he will be able to replace the roof.
So Mitsou, Count us your support group. We understand and we can take it. Between the all of us, everything that can possibly happen has happened. We get it. We emphasize. At various times any number of us have vented here, wailed here, sobbed here, shouted here, as well as rejoiced at the little things that have gone right. We have made friends. That life line Elizabeth sent out to you is real, hang on tight.
How much longer is your family out of the country? And I had a thought. Do they have any friends who might be able to visit or take you out for lunch? Could you ask tour family? Being isolated is the total pits and adding that onto everything else you are going through has to be thoroughly frustrating and demoralizing to say the least.
Anyway, keep coming to this site and know that we will be with you.
As lindyloo said - use us. this is all I have had for the last 10 years. Without this group, I would have remained so alone. Yes, I have attempted to go to support groups but they are nothing compared to here. Most of them have known each other for years - evidently they have been attending the group or their spouse/loved one is in the same facilities. They don't seem too interested in adding me to their 'in' group. I am really only attending because I was told by the VA I had to use my respite or loose it, so I do once a month. I go to hopefully get hints on where and how to go about placing him. I have yet to hear anything about AD or dealing with them that I have not learned here.
Hi Lindyloo – I’m pleased that you are my support group and I’ll return and talk to y’all as if you were across the table – boring stories that you may not wish to read but that will allow me to talk. My daughter and her family came back from China and Japan but now are way super busy. They won’t be able to move to their new house until the end of July so are living close to their work, which is about 1 ½ hour from me. Both my daughter and her husband were brought up in GA and their friends are there. They came to TN several years ago for their careers – both are in the medical field and work 50 to 60 hours per week, which is the reason they have two foreign au pairs + a day lady to take care of the 4 small children (5, 6, 9 and 11 years old.) If they have friends, and not many because of their schedules, it would be young couples like them, in their late 30s, with little kids and I don’t think any of them would have the time or the inclination to go to lunch with an old lady like me. That was a good suggestion but not feasible in my case, plus as this stage I don’t mind being alone.
– Hi Charlotte – I know what you mean when a group doesn’t look interested in you – that has happened to me, but that could be because of the difference in culture (I’ll talk about that later.) I was talking to the mailman today and told him I had moved from Georgia. He looked surprised and said I did not have a Georgia accent. So I told him I was originally from France, but was sure to add that I came as a legal immigrant and now was a US citizen – just in case you know. He told me that the next door neighbors (I talked about yesterday as not having much Southern courtesy,) had moved from Chicago, which is a bigger and more impersonal city, so that would explain it I guess. As I was bringing in the house a heavy box of kitty litter, in my small rolling cart, a middle age man was walking on the sidewalk (my area is called a “walking area”) and stopped. I thought I’d be a good neighbor and speak to him. He said he was just going to ask me if I needed help. I replied I was fine with the cart and said that it was a nice day for walking. Then I added “are you from the neighborhood?” he replied no, actually, he was not because he was homeless. I did not know exactly what to say, so just said “Oh” but he went on “actually it is better than where I was” so I replied “really?” to be polite. So he added “you see I was in jail.” Now I really did not know what to say, so I said “well I guess it is better to be in the open air.” He said yes and asked again if I needed help and did I live alone? To which I am afraid I lied, and said my husband was there as well as my two big boys, playing football right now. Well, just in case… this is a peculiar neighborhood.
I agree = good answer. I know many women who never take their wedding ring off so people won't know they are alone.
From the way it sounds with your daughter, I would give serious thought to moving back to GA even if it means moving your husband and eventually getting a smaller house. I know you said many of your friends are gone but it is where you are familiar with and sounds like more comfortable driving around.
Charlotte – I don’t think I can move back to GA now with DH settled in a MC, it would be too complicated. I’ll just have to get used to it.
Yesterday I went and visited him. He saw me and recognized me. He was sitting and playing with the pictures of his ‘cat-a-day desk calendar.” He did not stop. I just sat there for a while. There was a TV at the end of the room but he never watches it. I know he always likes music. At home we had music starting in the morning with a radio in the bathroom and on throughout the day. I took my cell phone and tried to find some YouTube music videos. The reception was very poor and slow. I thought he might like old songs. First I played Janis Joplin “me and Bobby McGee” as he knew Joplin because he was friend with members of Big Brother and the Holding Company when we lived in San Francisco (we lived there until 1970.) He stopped playing with his cat cards and listened. Then I found the Rolling Stones “miss you.” I don’t think he understood the lyrics but I did, so not such a good song when it says … I've been haunted in my sleep, You've been staring in my dreams, Lord I miss you… Then I thought a Beatles tune and found “Yesterday” but again not so hot when he says … Yesterday all my troubles seemed so far away. Now it looks as though they're here to stay. Oh, I believe in yesterday…. Moving on I found Hotel California by the Eagles. He really liked that as he now was beating his feet and tapping his hands in rhythms. But again, the song ends …'Relax' said the night man,'We are programmed to receive. You can check out any time you like, But you can never leave!' . I thought that is right, he won’t be able to leave the MC. Next I found Joan Baez (one of his favorites, we saw so many of her concerts in Berkeley and the Bay Area) and we listened to “My home’s across the Blue Ridge Mountains” but again she ends by saying ““Goodbye my little Nashville darling…for I never expect to see you anymore.” Well, I don’t think he will be back in Nashville either. So I stopped the music as I was almost in tears and took him out in the garden. It was sunny. At least grief is easier to bear under a sunny sky, don’t you think so?
Mitsou, I.did almost the same thing yesterday. Brought some music out to the patio since we no longer have anything to talk about. Put on an old play list and it had some Roberta Flack and Donny Hathaway. "For All We Know..... Tomorrow may mever come." Almost every sng elicited tears
Music is something that most people with dementia can continue to enjoy and relate to. Most of the time, in my experience, the words to the music will not elicit the same emotional response in them that it will for us. If it is too painful for us to listen to that is another question. For those whose spouses and partners are in assisted living or nursing home care, bringing CD's, boom boxes, and perhaps even headphones may be helpful for those who loved music. Staff can set it up for them to listen to. I understand the emotional impact of music. Nine months out and I am still not able to listen to the music that my partner and I loved together. Too painful. So I'm listening to my old classical and chamber music that I love, but we never listened to together.