Sincere thanks to everybody here offering the helpful suggestions especially to geddyupgo. Hopefully another week, I maybe able to walk slowly without pain from the herniated disc, and I will start visiting few ALF w/memory care near by. By the way, I am in Long Island, NY, and I do have POA. Appreciated all the kindness and caring from this group.
If you are the one making the decisions now because your husband cannot anymore because of dementia, there are certain words you will have to remove from your vocabulary when making decisons for him. Those words are 'refuse' and 'allow'.
Your husband is not in his right mind so he doesn't call the shots and make the decisions anymore. Whether he 'allows' or refuses it is irrelevant because you're the one in charge of making decisions for him.
Of course he refuses to go. What person has ever chosen to go into memory care or a nursing home? No one. People get placed in residential care because there is a need for them to be. It's hard on families when they have to place a LO. You're doing what needs to be done for your husband. His safety and care needs have to come before his wants and demands. I am no fan of Teepa Snow and never have been. She has no wisdom that is going to make you feel good about putting your spouse in a care facility. You're putting your feelings aside and doing what's best for him. Remember that.
If you have decided he's going into memory care, he's going into memory care and that's the end of it.
Get your husband evaluated by a medical doctor - at the least. A referral to a neurologist can help determine the type of dementia and treatment options. Since you have injured yourself while caring for him, he needs to be cared for by others until you are healed. Ask his doctor(s) to evaluate for mental competency. If he is not mentally competent, then you will/can make arrangements for his care regardless of his objections. However, please be respectful of his emotions - nobody with dementia likes change. Try to arrange care for him that will allow him to follow his usual schedule as much as possible in a place that "feels like home".
Of course he will refuse. Why would he want to go someone new, unfamiliar, when he is confused and has dementia?
Please google Teepa Snow, call her office, watch her You Tubes, get her books, sign up for her workshops / webinars. You need to educate yourself on what dementia is / how the brain changes, how dementia is learning a new language / communication 'style'.
If you have legal authority, you do what is needed to do - for his welfare and care. You do not 'ask' him...
As another said here, you get his room set up to look as it is now - more or less - you take him out for a ride / outing and then take him 'home' to his new home and 'act' as if he is at home ... because it is. He may or may not know the difference.
You take your power back and you make decisions. You do not argue. You offer reflective listening "I hear you saying xxx" and stop. If you start to engage in his confusion, insistence, or stance, you are setting yourself up for an argument, and emotional and psychological, and physical frustration for both of you.
You smile, talk softly, hold his hand, and introduce him to your 'new friend(s),' the staff / aide.
And you 100% do whatever you need to do to take care of YOURSELF. This is a huge step for you, too. Get the support you need. Generally it is recommended to NOT visit initially so the person gets used to the new environment. This is a personal decision although do discuss with the administrator/ social worker/ staff. They are experienced in these maters.
If you have the "authority" POA or Guardianship you can place him in Memory Care. As to him not wanting to go that is understandable. Any change is frightening. What you might be able to do is tell him that he has to go where people can care for him as you are injured now and can not take good care of him. You do not want to hurt him and you do not want to be hurt again. Do not tell him it is a permanent move for him. maybe that will help
This is a common and complex problem. I am dealing with it too with my Dad. Start by lining up your ducks and assessing what ducks you already have. You need legal authority to help him manage his affairs. Do you have a durable POA for financial and medical decisions? A formal medical diagnosis of cognitive impairment from a neurologist or family doctor will be very helpful to have in the event you need to place him against his will. The doctor needs to state whether he is capable of making sound decisions regarding important matters. Does he have the $ to afford memory care? Do you want to just get by with some at-home care for a while? Can you afford cameras and/or an alert device he wears around his neck to detect falls or wandering? Is there any adult daycare available in your area to give you a break and can you afford it? I just found one for my Dad that is $72.00/day with a two day per week minimum. They also provide transportation for $8.00 each way. That is $176.00 per week if we use the transportation service and $704.00/month if we use it. 6 hours of home care at $22.00/hour would be $132.00/day - $264.00/week - $1056.00/month. Daycare provides socialization but potentially exposes him to getting sick (like kids do at daycare). It also gives the family caregiver a break. Home care is more expensive and does not provide the same stimulation. But it keeps them in familiar surroundings. The family has to get used to the commotion of a caregiver being in the house. I will probably go with a combination of daycare and one day of a caregiver coming in. No matter what we decide we can plan it will be about $2000.00/month at a minimum for a combination of home and daycare. That is substantially less than one month of memory care, but it leaves time in between paid services when he needs eyes on him either by a family member or with cameras and a safety device monitored by a family member. It is a multi-faceted decision depending on finances, family resources and legal authority to implement a plan. Start making a plan with whatever you have. If you don’t have POA - get it. If you don’t have $ - see if he qualifies for any assistance. If you are going to use a facility - start checking their ratings and pricing and go visit. You need the support of his physician and other family members (if that is possible),
My BIL was like that refusing to go into a nursing home of any kind. He has dementia and was doing somewhat good at home but we had ring cameras in his dining room where we could see what he was doing in kitchen and living room. Also had one in his bedroom. He could get around fairly good would go on walks to the store by himself.
But when he fell outside and laid on the ground for 30 minutes until his neighbor found him, the family decided then it was time for memory care at the nursing home. He first went to the hospital because of that fall where they said he either had a heart attack or small stroke. From the hospital he went right into the nursing home. We had the room set up like his living room with his recliner, tv, and his own bedding on his bed there. Later the family put in a small fridge for his pop and water, they put his hats on the closet door then put pictures on the walls. He had his home phone there but that was taken out because of financial reasons but he still had his cell phone.
He has been in the nursing home memory care now for a year going on two. He still asks when can he go home but he forgets it right after it is said. His short term memory is gone.
Yes it is expensive but he is on medicaid along with social security and his pension pays for his room there. And I signed over the responsibility of the financial to the nursing home because of his family turning me into DHS twice and once to social security. The turning into social security was my last straw with those family members because they said I went on a lavish vacation with his entire finances.
So when the time comes you are thinking of him and yourself because if you can't take care of him where would you be or him. Its better to be safe.
Dont forget that he is not thinking rationally but you are.It is quite a burden and it is so hard.When our loved ones are no longer capable of knowing what is the right thing to do next it becomes our responsibility. I know you will do your best. Caregiving can break you down and make you doubt yourself.Make the hard decisions before tat happens.
Lushan: Everything cannot remain status quo as you've injured yourself. It is imperative that your DH (Dear Husband) be placed in a memory care facility, else your health worsens even further. YOU are now the person in control as your DH has a malfunctioning brain due to dementia. I suggest you garner knowledge on the disease by reading the book, 'The 36 Hour Day.'
"My husband did’t want to go to the doctor for assessment or diagnosis. He has all the symptoms of demantia and has progressed rapidly in the last few months. He wants me to help him with everything 24/7. Day and night. I am physically and mentally exhausted He gets confused what to do once he wets the diaper. He fell three times in two weeks in the mid of night, and I ended up injured myself with herniated disc by trying to get him up from the floor It’s been five weeks and I’m still in pain here and there with help of the chiropractor. I am currently Searching memory care in assisted living facilities, but I can’t tour the facilities until I can walk without the support of walker. Every time I mentioned ALF he would screamed and yelled “shut up” “shut up” !!!
Do I have to have official assessment from doctor to put him in memory care? I do have POA though. Thanks for any suggestions I can get."
First, are you your husband's PoA? Is anyone? If not, you won't have much ability to get him to go someplace he's resistant to.
Second, even if he has a PoA... he needs to have a medical diagnosis of dementia to activate the PoA's authority (in some cases a "durable" PoA does not require a diagnosis but I personally think it helps). In most cases there is no definitive test for dementia. It usually means discounting all other medical issues that can mimic dementia symptoms (and there are a few that are treatable).
Third, you will need to educate yourself about dementia: they lose their ability to use reason and logic; their memory worsens and they lose their grip on time -- all of which gives them anxiety and fear, plus you cannot "make a case" for them to do something so lifechanging as to move into AL. You will exhaust yourself trying to get him on board with this idea.
Start by hiring companion aids to come into your home. Tell him they are there to help YOU, not him (if this weirds him out). If he has anxiety, it would be helpful to have his physician prescribe meds to help him, but there's no guarantee he'll cooperate in taking them.
MC is expensive. So, starting with in-home aids for about 30 hrs per week will be far less expensive. You can go through an agency or hire privately. I'd start with an agency just to make your life easier right now. Or, do Care.com to find help.
I'm so sorry you're going through this... make sure to take care of yourself, since this will be a marathon, not a sprint.
I never told my mom it would be permanent, it was for “a while”. She agreed to go to rehab for a short stint but her situation is that she has zero sense of time. After 6 months of being there, she still thinks she just got there so when she asks how long she will be there, I tell her “at least two weeks”. She frowns a bit but says ok.
Same. I needed her to stay for a little while so I could have a knee tweak. Given that she’d lived with us for 17 years but swore it was only 2-3 weeks, we figured we could work that “little longer” angle. She’s in a very small care home and sometimes thinks it’s a bed and breakfast. Been there 2 years.
I am thinking about this issue in my husband's and my future. My husband, mid stage Alzheimers, sleeps in upstairs bedroom. He is physically able to manage the stairs. I had the one door to outside replaced with a window a couple of months ago for defense against elopement (which hasn't happened yet).
I have M.S. and avoid the stairs. I go up on all fours and scoot down on my rear, for safety. His bedroom was beginning to look like a mini hoarding situation. I have been preparing a downstairs room for his eventual occupation. Last week, my favorite aid and I sorted through half of his horde in preparation for that transition. It told quite a story about the state of his mind. It also angered him. He was fuming the next day. I explained as best I could that I had to adapt this space in order to make it manageable for me to keep him home longer. That didn't sooth him much. When I told him that when it became unmanageable for me he would need to move to memory care because 24/7 care at home would wipe us out financially. He said, "I WILL NOT go." I said, you won't have a choice if you won't cooperate with me on making our home work for both of us.
Who knows if that will impact his cooperation down the line? He has calmed down about the current changes. I have mentally prepared myself for lots of resistance. I think Mary Kathleen's strategy was very resourceful. I'm tucking that one away for future reference. I personally don't want to do it in crisis, if possible.
I expect to face this situation. I have told my husband and our kids that if I cannot care for him myself, we both go into AL at a facility with a continuum of care. I hope that will be an easier transition for when he needs higher level supervision than I can give him.
This Is so difficult. My mom refused to leave the house. Unfortunately I had to wait for something to happen. Two weeks ago she became physical ( I have bruises) with me and I called 911 she went to the hospital. Now she’s in rehab. She is not going home and going to memory care. She and we are at risk. This has been actually relieving to me. She will be at a safe and healthy place.
Like the man at the memory care facility talked to said, "No one wants to come here."
He suggested I do it his way. I had POA, I called 911, told the dispatcher I had POA, I was his wife, he had Alzheimer's, and he needed to go to the hospital for an evaluation. The medics came, wrapped him in a sheet (because he was fighting them) and took him to the hospital. The plan was to have the Memory Care pick him up from the hospital. The main thing was I had POA.
BUT.... we found out his kidneys had failed and he had only 10 days or so to live, so I brought him home. With my grandson and hospice to help me he lasted 5 days. A side note, his family called me all kinds of horrible names. I had to let it roll off my back.
It can happen, for a person to have insight to their level of independance/dependance...
To have insight into their level of functioning (mind/memory, disease or disability) & the impact this has on their spouse, children or other caregivers.
There are folk that encourage their spouse to go on holiday, take a cruise while they take a rest in temporary respite care (my DH met one man who regularly did this). There are folk who move themself into Assisted Living (I've met many).
However, I think that may be the minority.
Sadly, the majority, especially if cognition problems, will not be able to reason the need for formal care. Their brain cannot remember, process the information or forward plan.
That's when their spouse or appointed attorney makes decisions for them.
You don't give us much information to go on, but if your husband is at the point that you feel he really needs to be placed in a memory care facility, then it's you that makes that decision and not your husband. Most folks that I have known that placed their spouse, made sure that their room in memory care was set up ahead of time with things their loved one liked, and then they told them that they were going to lunch, which just happened to be at the memory care facility. And once lunch was over the aides came and said that they were going to show the spouse(being admitted)around the facility, while the other spouse snuck out of the facility. And of course it's always recommended that any family members stay away for a week or two to allow their loved one time to adjust to their new surroundings and the folks now caring for them. So long story short, your husband no longer has a say about what he does or doesn't want to do. You now have to do what is best for the both of you. I wish you the very best in getting him placed.
This still sounds similar to a story of parents that committed their son to a mental facility. They did roughly the same, as the son called out their names as they left.
If he needs Memory care, he no longer can make informed decisions. You now make them especially ifbyou have DPOA. If not, your his wife and should have no problem getting him in MC. Its not what he wants but what you need.
If u go this route, see an Elder Lawyer to have ur assets split.
Good question. I actually gave up fighting with my aunt. She's in her own house, on her own and on her own terms. I don't like it, but nothing that I can do. I'm told as long as she's coherent, nothing I or anyone can do.
What are 'her own terms'? Do they include you waiting on her? If so, one thing you can do it stop. If she's coherent, she may come to her own conclusion that she needs to move.
This is what my friend did: Set date for move in Hired movers and informed them that moving into facility and take pictures of how to set up furniture to look like it does at home. Inform facility when movers would be moving items in. Take dementia patient on long ride, day trip including a meal out. Upon return "home" arrive at the facility calling it "home". Lead dementia patient to room and refer to it as "home". Use sentences like: Oh I'm so glad to be home. Oh home is so nice and comfortable. Oh look my comfy chair is in my home. Etc. My friends mom didn't know she had been moved.
Has he received a diagnosis of dementia? What is his current level of cognitive function? Are there concerns about his safety, either towards you, himself, or others? Are you considering Memory Care (MC) exclusively, or is Assisted Living (AL)/Memory Care (MC) a possibility? Is he aware of his cognitive impairment?
These questions needs answers to enable us to assist you and you to make a decision. Regardless of the degree of cognitive decline, suggesting a change often meets resistance. Elderly individuals are particularly averse to change, and when compounded with mental impairment, it can evoke even greater fear.
As 97yroldmom mentioned go visit a couple facilities, that will give you some additional information.
Please know that this might be a decision you will need to make without him.
My husband did’t want to go to the doctor for assessment or diagnosis. He has all the symptoms of demantia and has progressed rapidly in the last few months. He wants me to help him with everything 24/7. Day and night. I am physically and mentally exhausted He gets confused what to do once he wets the diaper. He fell three times in two weeks in the mid of night, and I ended up injured myself with herniated disc by trying to get him up from the floor It’s been five weeks and I’m still in pain here and there with help of the chiropractor. I am currently Searching memory care in assisted living facilities, but I can’t tour the facilities until I can walk without the support of walker. Every time I mentioned ALF he would screamed and yelled “shut up” “shut up” !!! Do I have to have official assessment from doctor to put him in memory care? I do have POA though. Thanks for any suggestions I can get.
Lushan Does your husband live at home with you presently? Do you have DPOA? Has he been diagnosed? Have you visited facilities? Your answers to these questions might help give you some useful information.
Your husband is not in his right mind so he doesn't call the shots and make the decisions anymore. Whether he 'allows' or refuses it is irrelevant because you're the one in charge of making decisions for him.
Of course he refuses to go. What person has ever chosen to go into memory care or a nursing home? No one. People get placed in residential care because there is a need for them to be. It's hard on families when they have to place a LO. You're doing what needs to be done for your husband. His safety and care needs have to come before his wants and demands. I am no fan of Teepa Snow and never have been. She has no wisdom that is going to make you feel good about putting your spouse in a care facility. You're putting your feelings aside and doing what's best for him. Remember that.
If you have decided he's going into memory care, he's going into memory care and that's the end of it.
Please google Teepa Snow, call her office, watch her You Tubes, get her books, sign up for her workshops / webinars. You need to educate yourself on what dementia is / how the brain changes, how dementia is learning a new language / communication 'style'.
If you have legal authority, you do what is needed to do - for his welfare and care. You do not 'ask' him...
As another said here, you get his room set up to look as it is now - more or less - you take him out for a ride / outing and then take him 'home' to his new home and 'act' as if he is at home ... because it is. He may or may not know the difference.
You take your power back and you make decisions.
You do not argue. You offer reflective listening "I hear you saying xxx" and stop.
If you start to engage in his confusion, insistence, or stance, you are setting yourself up for an argument, and emotional and psychological, and physical frustration for both of you.
You smile, talk softly, hold his hand, and introduce him to your 'new friend(s),' the staff / aide.
And you 100% do whatever you need to do to take care of YOURSELF.
This is a huge step for you, too. Get the support you need.
Generally it is recommended to NOT visit initially so the person gets used to the new environment. This is a personal decision although do discuss with the administrator/ social worker/ staff. They are experienced in these maters.
Gena / Touch Matters
As to him not wanting to go that is understandable.
Any change is frightening.
What you might be able to do is tell him that he has to go where people can care for him as you are injured now and can not take good care of him. You do not want to hurt him and you do not want to be hurt again.
Do not tell him it is a permanent move for him.
maybe that will help
But when he fell outside and laid on the ground for 30 minutes until his neighbor found him, the family decided then it was time for memory care at the nursing home. He first went to the hospital because of that fall where they said he either had a heart attack or small stroke. From the hospital he went right into the nursing home. We had the room set up like his living room with his recliner, tv, and his own bedding on his bed there. Later the family put in a small fridge for his pop and water, they put his hats on the closet door then put pictures on the walls. He had his home phone there but that was taken out because of financial reasons but he still had his cell phone.
He has been in the nursing home memory care now for a year going on two. He still asks when can he go home but he forgets it right after it is said. His short term memory is gone.
Yes it is expensive but he is on medicaid along with social security and his pension pays for his room there. And I signed over the responsibility of the financial to the nursing home because of his family turning me into DHS twice and once to social security. The turning into social security was my last straw with those family members because they said I went on a lavish vacation with his entire finances.
So when the time comes you are thinking of him and yourself because if you can't take care of him where would you be or him. Its better to be safe.
Prayers.
"My husband did’t want to go to the doctor for assessment or diagnosis. He has all the symptoms of demantia and has progressed rapidly in the last few months. He wants me to help him with everything 24/7. Day and night. I am physically and mentally exhausted He gets confused what to do once he wets the diaper. He fell three times in two weeks in the mid of night, and I ended up injured myself with herniated disc by trying to get him up from the floor It’s been five weeks and I’m still in pain here and there with help of the chiropractor. I am currently Searching memory care in assisted living facilities, but I can’t tour the facilities until I can walk without the support of walker. Every time I mentioned
ALF he would screamed and yelled “shut up” “shut up” !!!
Do I have to have official assessment from doctor to put him in memory care? I do have POA though. Thanks for any suggestions I can get."
First, are you your husband's PoA? Is anyone? If not, you won't have much ability to get him to go someplace he's resistant to.
Second, even if he has a PoA... he needs to have a medical diagnosis of dementia to activate the PoA's authority (in some cases a "durable" PoA does not require a diagnosis but I personally think it helps). In most cases there is no definitive test for dementia. It usually means discounting all other medical issues that can mimic dementia symptoms (and there are a few that are treatable).
Third, you will need to educate yourself about dementia: they lose their ability to use reason and logic; their memory worsens and they lose their grip on time -- all of which gives them anxiety and fear, plus you cannot "make a case" for them to do something so lifechanging as to move into AL. You will exhaust yourself trying to get him on board with this idea.
Start by hiring companion aids to come into your home. Tell him they are there to help YOU, not him (if this weirds him out). If he has anxiety, it would be helpful to have his physician prescribe meds to help him, but there's no guarantee he'll cooperate in taking them.
MC is expensive. So, starting with in-home aids for about 30 hrs per week will be far less expensive. You can go through an agency or hire privately. I'd start with an agency just to make your life easier right now. Or, do Care.com to find help.
I'm so sorry you're going through this... make sure to take care of yourself, since this will be a marathon, not a sprint.
I have M.S. and avoid the stairs. I go up on all fours and scoot down on my rear, for safety. His bedroom was beginning to look like a mini hoarding situation. I have been preparing a downstairs room for his eventual occupation. Last week, my favorite aid and I sorted through half of his horde in preparation for that transition. It told quite a story about the state of his mind. It also angered him. He was fuming the next day. I explained as best I could that I had to adapt this space in order to make it manageable for me to keep him home longer. That didn't sooth him much. When I told him that when it became unmanageable for me he would need to move to memory care because 24/7 care at home would wipe us out financially. He said, "I WILL NOT go." I said, you won't have a choice if you won't cooperate with me on making our home work for both of us.
Who knows if that will impact his cooperation down the line? He has calmed down about the current changes. I have mentally prepared myself for lots of resistance. I think Mary Kathleen's strategy was very resourceful. I'm tucking that one away for future reference. I personally don't want to do it in crisis, if possible.
Best wishes to you and your husband.
He suggested I do it his way. I had POA, I called 911, told the dispatcher I had POA, I was his wife, he had Alzheimer's, and he needed to go to the hospital for an evaluation. The medics came, wrapped him in a sheet (because he was fighting them) and took him to the hospital. The plan was to have the Memory Care pick him up from the hospital. The main thing was I had POA.
BUT.... we found out his kidneys had failed and he had only 10 days or so to live, so I brought him home. With my grandson and hospice to help me he lasted 5 days. A side note, his family called me all kinds of horrible names. I had to let it roll off my back.
To have insight into their level of functioning (mind/memory, disease or disability) & the impact this has on their spouse, children or other caregivers.
There are folk that encourage their spouse to go on holiday, take a cruise while they take a rest in temporary respite care (my DH met one man who regularly did this). There are folk who move themself into Assisted Living (I've met many).
However, I think that may be the minority.
Sadly, the majority, especially if cognition problems, will not be able to reason the need for formal care. Their brain cannot remember, process the information or forward plan.
That's when their spouse or appointed attorney makes decisions for them.
Most folks that I have known that placed their spouse, made sure that their room in memory care was set up ahead of time with things their loved one liked, and then they told them that they were going to lunch, which just happened to be at the memory care facility.
And once lunch was over the aides came and said that they were going to show the spouse(being admitted)around the facility, while the other spouse snuck out of the facility.
And of course it's always recommended that any family members stay away for a week or two to allow their loved one time to adjust to their new surroundings and the folks now caring for them.
So long story short, your husband no longer has a say about what he does or doesn't want to do.
You now have to do what is best for the both of you.
I wish you the very best in getting him placed.
If u go this route, see an Elder Lawyer to have ur assets split.
Set date for move in
Hired movers and informed them that moving into facility and take pictures of how to set up furniture to look like it does at home.
Inform facility when movers would be moving items in.
Take dementia patient on long ride, day trip including a meal out.
Upon return "home" arrive at the facility calling it "home".
Lead dementia patient to room and refer to it as "home".
Use sentences like:
Oh I'm so glad to be home.
Oh home is so nice and comfortable.
Oh look my comfy chair is in my home.
Etc.
My friends mom didn't know she had been moved.
This is exactly what I would do.
Gena
These questions needs answers to enable us to assist you and you to make a decision. Regardless of the degree of cognitive decline, suggesting a change often meets resistance. Elderly individuals are particularly averse to change, and when compounded with mental impairment, it can evoke even greater fear.
As 97yroldmom mentioned go visit a couple facilities, that will give you some additional information.
Please know that this might be a decision you will need to make without him.
best wishes.
ALF he would screamed and yelled “shut up” “shut up” !!!
Do I have to have official assessment from doctor to put him in memory care? I do have POA though. Thanks for any suggestions I can get.
Does your husband live at home with you presently? Do you have DPOA? Has he been diagnosed? Have you visited facilities?
Your answers to these questions might help give you some useful information.