Hi Update on my move to be nearer to my DH. I hate this DH thing now, his name is Kevan ( correct spelling)
I moved from my home about 67 km from here and I have had a terrible time adjusting. I never go out, haven't tried to meet people. I have a neighbour who smokes so much that the hall is full of second hand smoke. I have had to put weatherstripping around my door but it still leaks in. I was very sick in Dec and Jan because of the smoke. I was put on prednisone, terrible drug, had a reaction. So much ice and snow that I couldn't get out much. Now that is my winter.
I had thought that being closer to Kevan would be good for both of us. I missed our being a couple so bad but that was a big mistake. He became very controlling and has it in his head that I am mentally ill. He has sent emails to our children telling them not to encourage me in my trying to find a healthier place to live. The staff at the LTC have told me they are now prepared for a big change in him for the worse. They can see it coming. They have told me that they don't think I should be bringing him home anymore as they are concerned for my safety. He can be so sweet and so nasty in a very short time.
My house in the other town has not sold so I have decided to move back on the 1 st of April. I have not told him or my children just the LTC. I have a Alzheimer's support group there and it is not so busy. I am so tired of everyone giving me static about my whole life. They have no idea what this disease does to the person that has loss everything special in their lives. Their life partner is gone, friends have gone, in my case my two pets of 13 years died at the same time as Kevan left.
It will be a year in early June that Kevan decided to move to LTC and it has been a hard year for me. I was just so lost that I just jumped and made the wrong decision. I'm lucky I still have my house to move back to.
Kevan is now on Ativan as needed and he is having a stress test on Monday as there are times like when he walks and even makes his bed when he can't breath and the pain in his chest is really bad. I insisted they do thus test as I want to know what this is. I don't want him in pain if they can give him something to control it.
So that is my update.
I went to my house last week and my neighbours were saying hello and coming over to talk and ask how I was. They were happy to here I was moving back. It felt good.
Good luck Jazzy-- Sorry about the tobacco smoke...that's stinky stuff, and I sympathize. Interesting to me how the ALF staff can sense impending changes before we know they're coming. Same thing happened with us, and they were generally right on the money. I guess because they've seen it so many times, and we are living through it once.
You went to try this and because you did I suspect you will be more open to the neighbourhood and the house than you may have otherwise. If you know now you may stay then perhaps you could find cats that need a home. I wasn't the cat person Dianne was but I'm so glad I have them to take care of.
I have a z6 month old Yorkie now and he keeps me busy. He is paper trained, that will change once we are moved to the house with a yard, he hates dirty paper, so whenever he poops or pees he insists that that be removed and new paper put down, he won't quit bugging me until I do it. Your right, I never had time for the neighbours and they must have had concerns about Kevan, but now it's just me and they are more open. I have caregiver company ready to provide grass cutting and snow removal all lined up. They will also help find cleaners if I need them.
Maybe try to embrace it for what it is. The neighbours can't replace Kevan; but, you now know how much better this is than the smoke filled apartment and in my experience everything I learn helps me. Just knowing I'm looking forward to something like this change back is big. And part of it for me is learning what I'm better off with. Good luck.
Katherincecs be sure this is the best for you before you move.
I had a visit with my new Dr. Today and she feels that if I don't make this move back that I may end up in depression. I have found two Motels that at inexpensive but nice and safe and clean and I will stay there if the weather catches me off guard in the winter. I feel so much better since making this decision and putting things in motion for the move. I love him dearly but I will be of no use to him if I am sick. I am not my family or Kevan what I plan until I am moved as they will just make my life hell, so I will take charge of my life and what is right for me now. No interference from anyone. Mr new Doc agrees that I need to do this on my own. It will build confidence. Love thus Gal.
Jazzy, you've had a pretty rough time, but it happened for a reason. Just look at how positive & in control you sound now! Good for you! I don't know your age, but at mine (72) I discovered that there is satisfaction in doing what I think is best for me (not hurting anyone else in the process, of course). It simply doesn't matter what others think or understand (well, they don't really understand, I guess). I began to become a little more independent several years ago, never imagining how I would need that sense of independence & responsibility for myself in the future. It might sound silly, but I'm proud of you! You go, girl! (I don't think people say that anymore, do they? Well, you know what? I don't care! :D )
I and just turning 72 at the end of summer. Never lived alone and he was always there. He used to travel quite a lot and I was able to take care of everything then but this so alone not two of us anymore. Very different. It's hard to start over alone.
Jazzy, you are doing what is best for you. You have done everything you can for Kevan, and now its time for Jazzy to look after Jazzy. And I am sure that once you settle in to your house you will find time for the neighbors, and your Yorkie will help you! I've always found that having a dog is a good way to get into a conversation with a neighbor -its like having a toddler!
Jazzy, congratulations on making this move for you! We all know you'll always be there for Kevan, but you do have to take care of yourself as well.
A side note...I travelled a lot on business and I was able to negotiate a lower rate with the hotel/motel of my choice because I could guarantee them I would be there a certain # of times a year. And they even would give me the same room each time if I gave them enough notice. It worked out great for me as a woman traveling alone. You might want to see if the manager or marketing director of the hotel/motel you're interested in staying in would be willing to make that type of arrangement for you when visiting Kevan. Doesn't hurt to ask.
I am sorry you have had such struggles. However, you now sound so much stronger having tried to give this a chance and seeing that going back home will be healthier for you. You count! You are doing the best you can for your Kevan and it is not easy at all even when the loved one does not have the anger/control feature this disease places on some. You are strong and you will be able to deal with anyone who may challenge you for any decision you make. You are right, no one knows what it is like to contend with the years of caregiving unless they have done it too. Bless you.
I finally told Kevan what I was doing and he was sad that I will be farther away but happy that I had finally decided what was best for me. Now many of you will realize that his being so agreeable will not likely last and he will be back to giving me a hard time again. I am really looking forward to my move. Next Friday I have been invited to a caregivers retreat. They are even having PSW 's come to care for your Dementia partner at no cost. Everything is no cost to us. I think this is lovely. I will only be able to go for part of it as I have to travel there, but I think this is going to be fun. I will be moving on April 01 and it will take me a month or two to get the house back the way I like it. So many of us just don't know what to do for us and it is so hard to start over. This disease can destroy us as well.
At least you tried it....and it didn't work....so now you can say you know what it feels like and it wasn't for you.
Hubby is 50 km away from where I live and I don't mind the drive. I also look at should I move or stay and after looking at the market and what I could buy I just couldn't get anything close to what I have now so here I stay.
Just think soon spring will be here and, if you are a gardener, all the fun you can have.
Now am on the s**t list again. I verbally objected to Kevan controlling my life by keeping control of the finances and not letting me learn how to take care of me without him involved. He was very upset because I had, as he and I had decided a few weeks ago, to open two accounts just in my name so I could transfer money to them for me to learn how. He was very upset and insisted on having access to them and insisted on discussing this problem right now. When I refused he kept insisting so I did as I had been advised to do in this kind of situation. I hung up!! Now he will not answer my calls. I called his nurse and she said he is his normal self, showing no signs of upset. I am going to just sit back and wait to see how long this pout will last. This disease is so hard to understand. All the ups and downs. The ward nurse has told me that they have advised his Dr. To be ready with Meds all set up as they feel he is on the verge of a big drop and they need to be ready. I have asked for a letter of incompetence so I can take over the finances quickly. He seems so good and has just started to have problems with the finances but still wants to maintain control. I am so sad right now. It breaks my heart. Around and around we go and where we stop nobody knows!!
Jazzy, I have been thinking about your post, and I am worried that someone with AD is in control of your finances. I hope you have a durable power of attorney, but in any case, you need to be getting things in your name only, and learning to manage the net worth. There is a lot of information out there about personal finance, and I'm hoping you are studying up on it.(Simplicity and frugality are best, imho.) I found it hard to take over the finances at first--it seemed disloyal, and I did not want to appear grasping. But there was no question that my husband's financial judgment was going south, and I really had to take a long, deep breath and step up to the plate, especially that my income was more than his, and it would have been lunacy not to protect it. I was able to get his name off the house, sell his car, and buy a new car( when we needed it) and put it in my name only. I made sure that I had a bank account (and credit card) that was not joint--that was mine alone. I sold his (stupid) investments, and started plain vanilla, low-cost index funds in a brokerage account that only has my name on it. The only thing we have that is joint is the bank account where his pension and social security check are direct deposited. I write a check for the full amount on the third of every month and put that money in the bank account that is in my name only. He has no memory or judgment left, and it just makes no sense to have his name on anything. It would be like giving a two-year-old access to the family funds. Currently, I am providing all his care myself (and just about collapsing), but in the past every penny of his checks went to pay for his aide, and that may well be the case again. We live off my income for the most part, and I save his income in case I need to re-start an aide, purchase something expensive for him (lift chair? new bed?)or private-pay for some respite. You need to protect yourself financially, and not let a demented person control this crucial aspect of your life.
It has been two day since our disagreement and Kevan is still not taking my calls, answering my emails. The Nurse says he is behaving as he usually does so it is just his way of punishing me. I know it's the disease but it really ticks me off. I have no way of working this out with him, no way of trying to reason with him. I just have to wait and let the chips fall.
I agree with PaulC…guess that was clear from my previous post. Push for that letter saying Kevan is incompetent, or use your durable power of attorney if you have one. You must get control of whatever assets you and Kevan have. If you have your own income coming in, make sure it is not going into a joint account. And three cheers for going back to your house. I don't know whether it is yours alone, but if your husband's name is on it, work toward getting him taken off. As hard as it was to make myself take control of our estate , when I look at DH now, I am so glad I did it. He is completely helpless, couldn't possibly sign off on anything--like a house deed or a car title or the tax returns--and I know that anything I do with what "I" have will be totally in his best interests and will follow the wishes he expressed before he became demented, and will follow the plans we made together…as best as I can. It is a scary responsibility, but we all have to do it. When I see him falling and incontinent, sometimes not knowing if it is day or night, getting lost inside of our little two-bedroom flat ranch-style house…I know I just have to take care of all this. And it takes a while to realize that the loved one is just not there anymore--no use trying to reason--and there is no relationship at all. We are really alone with this long-term nightmare.
Jazzy, I agree with the others...you must start taking control of the finances and make sure your husband doesn't have access to the accounts. I understand it's a difficult transition but it must be done for your own protection. My FICO score is finally rebounding after 6 years (it was very high before)...my husband ruined our credit by mishandling credit cards, checking accounts, etc. even though we only had 1 joint credit card and a small joint bank account.
Elizabeth, not sure where you live but in many states whatever income you or your spouse makes while married is considered community property and it would be considered if he applied for Medicaid. Having it in your name alone prohibits him from accessing the money but not from consideration if you/he applied for any state/federal aid or programs.
Jazzy my husband does the same thing if he thinks I have done something he does like. The silent treatment is a killer.
It is great you are checking in with the nurses and that Kevan is fine.
I have come to the place when my husband does not answer his phone or refuses to speak with me, I just leave him alone and give him time. It took me a long time to get here and I still struggle with being rejected however in time he phones and often does not remember what he was upset about. I do not bring it up and just go with where he is at.
I agree with others it is crucial you get the finances in your name. Prior to diagnosis my husband made all kinds of horrid financial decisions and the bank couldn't do anything as there was no diagnosis. All of my husband's income goes directly to the facility he is in and I am now left with huge debt.
I can so relate that you want to make these decisions with Kevan. I learned after years of trying to do the same that my husband was no longer capable of making decisions thus got agitated and abusive. I simply started doing things on my own since I had power of attorney and a letter from the doctor saying this needed to be enacted.
I do not bring up those topics and he does not ask anymore.
Forgive me if my comments do not fit with your situation. I offer them in compassion where you are at.
It took me a long and hard time to figure out how to make things easier for both my husband and myself.
LFL, yes, I know what you mean--even if the well spouse is sole owner, their assets are counted in terms of a Medicaid application for the Alzheimers patient. The answer to protect your assets is some kind of asset preservation or "Medicaid" trust. I'm sure state laws vary, and interpretation of Medicaid regulations can vary even among counties in the same state. I should have done a Medicaid trust a number of years ago--there is a five-year lookback, I think--but I was foolish and decided that I would use our net worth to pay for care at home…being a nurse, I thought I could handle that, and that he would get better care. He has always been adamant about not wanting placement, and even now, he will get dreadfully upset if nursing homes are mentioned. He definitely has a better quality of life here at home with his 24/7 private nurse (me), but for myself, even as a fairly sophisticated caregiver, I did not plan as well as I should have to see that I would be taken care of, too. One goal has always been to make sure he is cared for without impoverishing myself, and that may not be possible. Time will tell. But I live well within our means, and I embrace a pleasant but frugal and minimalist lifestyle. If I end up poor--and it looks like I might--I will know how to make the most of it. And I'd rather be poor and free without an Alzheimers patient to take care of than to be comfortably middle-class and not able to enjoy a thing because of isolation, poop, and the whole AD bit.
Jazzy, it's so hard, isn't it. But it seems we can try and try but it just can't change the inevitable. Good luck on your move back home. I claim to be a cat person, have three, but recently adopted a rescue maltese dog. Since I cannot travel it seemed logical ... Really.... anyway it is the best thing I have done recently. My cats are companions but Buddy Loves me. I was having a crying jag the other day and Buddy jumped on my lap and licked my tears away. (I would have thought that was disgusting a few months ago.) Sigh <3 I agree with all here, do get your finances in your name esp. if he is vindictive or mean,it could be disastrous for you...lawyers, elder social workers, maybe even his ltc place can give you contacts to help you. Spring is here, new life abounds.
Hang in there Jazzy. I think of you often and feel sad for all you have had to put up with. I hope things will improve for you in your home, with your puppy and the good weather on its way finally.
Elizabeth...no judgements here....we all do what we have to do. I've made the same choices as you have. So when we run out of money he will be on Medicaid and I will be poor and probably living on state/federal assistance. It's a choice I made and I do believe he is still alive because of my choice. I on the other hand may have a very compromised life financially and otherwise, but I made that decision.
LFL. elizabeth and jazzy. my husband just qualified for medicaid. we are in michigan. i live in our house, that plus our farm, because the house sits on it, was exempt. i am allowed to have so many assets and also lawyer set up a trust called SBO , which means for spousal support only and put assets in it that would not be exempt. this was done after my husband was in a long term care facility and medicare would not pay any more because he was not making progress, duh. the cost would not have been too bad but the trust cost more. it was about the same as on month's billing at the facility. i don't know how anyone could cover the cost which was going to be about 90,000 a year. i have one year to get everything transferred into my name and there will be a review in a year. most lawyers will give a free consultation and you can cover most questions in that time and then decide what to do. i talked to two different ones and the second one had a much more workable plan for us. i hope this information might help some of you. i hated divulging all of our personal info but that's small compared to being penniless. hugs to all.
Dorie, the way it worked in New York was that the patient did get the Medicaid and the care, but the spouse was not left with much. The state seemed to be closing all the loopholes (like spousal refusal, or Medicaid divorce) and also was going after the spouse's assets after the patient died. Scary stuff. I researched the issue til I was blue in the face, and just could not see putting DH on Medicaid unless every other option in the universe was exhausted. We're in Ohio now, and I don't know the ins and outs here in this state and county, but I doubt that community spouse Medicaid would be any less problematic here than in New York. Our family's plan is still for me to be the primary caregiver and to private pay for whatever services I need to help me; and we will likely use Hospice, assuming that they will bill his Medicare. I will have to back off from having much involvement with the grandchildren, but it can't be helped. I am 25 years younger than DH (64 and 89) and I will still likely have years and years to need to support myself after he dies. I'm not complaining…just saying.
elizabeth, i found in my research before going to lawyer, that some lawyer's have web sites with articles they have written on subject's pertaining to medicaid, etc. try googling for elder care lawyers in ohio and maybe you will find some helpful info. also i got help from nursing home employees with information on applying, it's worth a try i think. i am 78 and hb is 82, hard to find a job at this age to get income to live on. they have allowed me a decent amount to live on as i will get his social security plus mine which i think i can live ok not great but ok.
dorie, I've consulted 2 elder law attys and both recommended special needs trusts for me (I have severe ra) and my husband so if we apply for Medicaid for him it would protect our assets. However, the trusts are quite complicated and restrict the amount of money we can use at any time. One atty said, "the good news about Medicaid is that you'll be able to keep the house, the bad news is that you won't be able to afford to live in it". That's true in our case...cost of living in the northeast is outrageous.
I agree with Elizabeth that I would rather be poor than be cleaning up poop. I applied for Medicaid and finally got approved. I spent it all down on my house and will have it paid for in about 20 months. I live frugally and simply and am so grateful this disease has not stolen my health. He was placed 7 months ago and is declining. Don't know how much longer he will go but I have our funerals paid for and soon will be debt free. I have a little left but not much and plan to work for a while yet. I paid a lawyer to handle the Medicaid and it was worth every penny. My best to all
Well I am off the hook for my apartment lease as it has been rented and no penalty for me. The new tenants want it a week early so I will be reimbursed for that time.
For some reason he didn't seem to be frightened or concerned in any way during the angiogram and angioplasty. Just impatient to get it done. Now he is anxious to get back to the LTC.
He is unable to help with my move and I think he has forgotten that as well. One of our son's is going to try to come down and help me take down curtain rod as the are quite high and there are heavy items that can't go on the truck. I am really looking forward to this move. I know it is farther to travel but I think it will be better in the long run.
Hi Ring, Where have you been hiding? Do you really believe the good weather is coming? I have lost total faith in our weather forecasters. Maybe we can talk bdq into lunch again sometime. Maybe Carleton Place or Perth. Maybe they are closer for her.
Good luck with the move, Jazzy. I hope you do get some help, and don't try to do too much on your own.
Count me in for lunch. Perth is too far, but Carleton Place might work - its only a few minutes further for me than a drive to Ottawa. I suggest we wait until Jazzy is settled back home, and perhaps by then the weather will be better!
Jazzy, what about Almonte? Its a little closer for me, but not much farther for you (straight up the highway), and there are some nice places to eat there.
Wolf, I'll be headed your direction at the end of June for a few days of vacation/respite. I'll be staying at a B&B near St. Agatha. You tell me where you want to meet, and I'll bring you a beaver tail! It won't be as fresh as if you just bought it on the canal, but I am sure it will do! :-)
Beavertail is a deep fried blob of dough roughly shaped like a beavertail in the same way a cow pie might be. Sometimes with a filling or topping or sugar sprinkling.
bqd - I know a decent restaurant in St Agatha if you like I'll spring for a lunch or dinner. Don't worry about the beavertail. I'm just having fun even though pastry is my weakness. Bring this up as it gets close if you like and don't worry if plans change.
Jazzy, it might be better that your husband cannot help with the move. I would worry that he might start railing against it in the middle of the moving process. I am glad you are looking forward to the move back to your house, I think it will make you better.
Wolf - its a done deal. I'll give you details when June rolls around. And no beavertail. I can't imagine what a beavertail which is a few days old would taste like - I have trouble making them last for more than a few minutes!
Jazzy, I just read what you posted on your other thread, and I agree with paulc. It is probably a blessing that Kevan can't help you move.