I Can’t Do It!
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Greetings LorettaP.
I am so sorry. I remember the day we received my DH's diagnosis (February 2019). I was both relieved and heartbroken at the same time. Relieved to know what was causing his problems after many months of testing. And heartbroken because I had been reading about Alzheimer's and what may be down the road for us. And of course I was scared.
The good news is that you have a confirmed diagnosis. The confirmed dx will be helpful for you both to determine how you want to proceed. I applaud you for recognizing your energy limitations and realizing that caregiving may be too much for you to manage on your own.
I am in Texas. Here we have people that you can hire to figure it out and manage care for you. They may be called care managers. I have no experience with the hired care managers. I just know they exist here.
It is important to have the tough discussion now, if you have not done so already. Its important to get legal affairs in order, if you have not done so already.
I wish you patience and strength as you embark on the dementia journey. You are among friends here.
-LT
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Loretta: I am so sorry you have found yourself in this situation. You will find support in this forum which is very important for you. My suggestion is to reach out to your local Alzheimer’s Society for counseling. You face many decisions and if you are fortunate to have an active Society nearby they will offer you good advice about how to deal with many aspects of your challenging future. You need to get legal affairs in order including Powers of Attorney, perhaps arrange care support to give you some respite, personal counseling to help you learn how to deal with the stress of being a caregiver. It does seem overwhelming but as your post heading suggests you cannot do it all by yourself, especially with your own health challenges. Once you establish some links and support, and develop a plan to move forward it will seem more manageable. Most of us start out on this journey of caregiving trying to do everything on our own. It is not possible, especially as the disease progresses. I sincerely hope you are successful in finding the support and help you need.
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Lady Texan, Prob a stupid question, it what difficult discussion now do I need to have? I got all legal affairs of his in order already, have an appointment with an elder law attorney in August (that was their soonest availability). Do you mean discuss his care with him? Because I’m terrified of doing that. He once told me if he were ever a burden on me. He’d blow his brains out. So I’m not sure what to do here. I’ve discussed future care with his daughter only.0
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Loretta, welcome to the forum. Sorry you need to be here, but rest assured that you are in a good place to get and give advice, or just learn whatever you can. Here is a good source for reading about dementia. It will give you a good start. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf0
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Sorry Loretta. That was a typo. I meant to say it is important to have the tough discussions now. It should have been plural. For example,
- one tough discussion was about NOT driving.
- another discussion a psychologist encouraged us to have was DH's wishes about who would care for DH. I assumed it would always be me. DH told the psychologist that after a specific point, he didn't want me to care for him anymore. That he wanted someone else to do it.
- we had to discuss DH leaving the work force.
- we discussed moving to be closer to healthcare providers.
The discussions allowed me to understand DH's wants and wishes while we were making decisions about our future. Of course, some of DH's wants and wishes were no longer possible, such as continuing to drive. His reaction time and motor skills were impaired to the point that he was no longer safe to drive.Now, I am the sole decision maker because DH has lost most of his executive functioning and logic.
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Hi Loretta. I was struck by what you said about "blowing his brains out." That's no idle threat. I agree you need to have those tough discussions, but if there are guns in the house, move them now and lock them up. Better safe than sorry on that one for sure. On the driving, Victoria is right. If it's now in his medical record, he could be criminally prosecuted and financially ruined. You can ask the doctor to report him to the state and have his license revoked, that may help somewhat to take the monkey off your back.
I know this is hard. We are all in the same or similar boat.
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LadyTexan, Thank you for clarification and the advice. I will have those discussions you recommended with him. Thank you!0
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LorettaP wrote:Do you mean discuss his care with him? Because I’m terrified of doing that. He once told me if he were ever a burden on me. He’d blow his brains out.
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LorettaP, your DH may have anosognosia. This means he is unaware of having cognitive limitations. Be careful how you address upcoming discussions. For example, don't say "we need to do this or that because you have dementia." The members have good suggestions of how to phrase talks.
Iris L
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Hi Loretta,Since you have already had the driving discussion and it turned into an unsuccessful argument, you may need to take the keys, make his car disappear, and face his wrath about it. In my case, the driving discussion never worked. Instead, I had to live with him yelling about it, demanding the keys, and being argumentative about riding in the passenger seat every time we went out. That went on for months but eventually fizzled out.If you are already his financial and healthcare POA or you are considering putting this in place in August, try to have as many people as possible listed as successors after you that are willing and capable of doing the job. Hopefully these people exist. A supportive daughter is one thing, but one that is willing to step up to the plate and take on this role is another. Having alternative POAs will help you know that you can resign and step aside if you need to without worrying about who can take over and feeling trapped. If there is no one, or a shortage of people, discuss this with the attorney. You need to know you have options and DH needs a solid plan that includes contingencies as well.If you do decide to take it one step at a time as the primary caregiver, it might help with your fear of the future to discover and write down all of your sources of help even if you don't think DH would agree etc. Things like adult day care facilities (so you can be on your own during the day and also have someone else do hygiene tasks if needed), respite facilities (so you can have a week or more off at a time), home care agencies for daily help (including tasks your husband does for you), and long term care facilities near you or near his daughter or another POA should this ever be needed. Financing all of this is a topic to discuss with the attorney. This is down-the-road and worst case planning so you can hopefully lessen some of the fear and overwhelm.
Don't forget we're here. Post as often as you need. This is such a devastating situation for you and DH to find yourselves in and everyone here understands.
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LorettaP,
One of my husband's first symptoms was (and still is) hallucinations in 2016. He was diagnosed with Alzheimer's via a PET scan. He's on meds that sedate him because he becomes highly agitated. Over time his hallucinations have decreased since the beginning of this nightmare of a disease. Being a caregiver is extremely difficult but you have to take care of yourself.
I've been keeping a journal about my husband since 2016 and the earlier stages were the most difficult when he was most active. He's now 100% incontinent, sleeps more, doesn't pace, doesn't wander, still has a good appetite, can feed himself finger foods, is still mobile but walks at a very slow pace. He still becomes agitated (which is extremely disturbing to me) but not as much as in the earlier stages.
You're stronger than you know. This is a great website and I hope you keep posting.
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LorettaP wrote:. He once told me if he were ever a burden on me. He’d blow his brains out. So I’m not sure what to do here.
IMHO This is an INCREDIBLY aggressive abusive controlling statement (I assume its pre dementia)
Its the same old "do what I want or I will kill myself in front of you "
In other words he wants you to be his door matHE decides not YOU since HE is in charge
You need help dealing with that
Does he have guns?
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Crushed wrote:LorettaP wrote:He once told me if he were ever a burden on me. He’d blow his brains out. So I’m not sure what to do here.
IMHO This is an INCREDIBLY aggressive abusive controlling statement
Its the same old "do what I want or I will kill myself in front of you " In other words he wants you to be his door matHE decides not YOU since HE is in charge
You need help dealing with that
Does he have guns?
Lady Texan response:
I was reluctant to comment, fearing the wrath of Crushed will rain down on me. My interpretation of your DH's statement is NOT the same (as Crushed's) at all. My interpretation is that your DH wants to control how he exits this life, not that he wants to control you.
Regardless, he has made a statement about harming himself and it should be taken seriously.
I whole heartedly agree that all weapons, including ammo, should be removed from the house.
My heart goes out to you dear.
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Loretta, I am so sorry you are facing this, and I give you a lot of credit for admitting up front that you won't be able to care for him long term. I agree with all the advice above, but I want to add one caveat -----the hard discussions aren't just with him, some of them will be with yourself. He is losing his ability to reason and make executive decisions, can no longer be reasonable (just look at his reaction to the driving issue.) It will be up to you to look within yourself, consider all the factors such as your own physical limitations, and make a plan. The big first step is getting your finances in order. The elder law attorney will help you with that, will explain what you can keep for yourself and what will need to be spent on his care before applying for Medicaid. The next step will be doing research on what types of care facilities are available in your area, and which ones take Medicaid if he won't be private pay for long. Examples are assisted living, memory care, private care homes, and nursing homes. Here in Massachusetts, Medicaid won't pay for memory care and only in specific facilities for assisted living, but your state may differ. Also, is he a veteran who could get veteran's benefits? And there are options for getting private care into your home. You are wise to start now, it takes awhile to sort all this out. If it feels too overwhelming, most places have private geriatric care managers who can help you navigate this --- there is a fee but it might be money well spent. And you will find a ton of support right here, you'll be able to get help and advice with any questions that come up.0
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Hi Loretta:
We have some similarities and some differences, of course. The bottom line is that like you I Can't Do It!
I am severely disabled by my Immune Disease (like autoimmune disease, my immune system attacks my body, but with cytokines not autoantibodies). I'm 79 and the toll on my body has been horrific. I cannot stand for any time, wear braces and walk with a walker.
A nurse comes to our home to give me IVIG every four weeks since 2013. I have an average of one doctor's appointment a week, often two or three.
My latest diagnosis is Macular Degeneration....my future holds blindness as well as physical disabilities.
My husband is MY caretaker. He does so many things for me, and I know that I will lose his care and that I won't be able to care for him as his disease progresses. This is frightening and heartbreaking.
We have been married for 59 years. We have two sons and six grandchildren. I cannot imagine a future without him. But this is what it is, so I must accept it. The 'new normal' which seems to change weekly!
We moved to a retirement community 2 years ago, at my insistence. I was so isolated in our lovely home. Here I'm surrounded by professional staff who know how deal with our problem, and caring residents, many of whom have a spouse with dementia. There is a Memory Care unit here.
My DH is 82 and in a much earlier stage of the Vascular Dementia (VD) that runs in his family. From the beginning (5 years ago) he had all of the signs. But he isn't anywhere as advanced in dementia as your DH.
I expect our son to 'take away the keys' when the time comes. DH is still driving, but I had to stop driving in 2016. I cannot imagine how your DH is driving with the difficulties you have described.
I'm so glad you're here, Loretta. There are wonderful, knowledgeable, caring people here. We are all different and my advice is: Take what you need, and leave the rest. Here, you will get much of what you need on your difficult journey.
Love, Elaine
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Lady Texan response:
I was reluctant to comment, fearing the wrath of Crushed will rain down on me. My interpretation of your DH's statement is NOT the same (as Crushed's) at all. My interpretation is that your DH wants to control how he exits this life, not that he wants to control you.
Regardless, he has made a statement about harming himself and it should be taken seriously.
I whole heartedly agree that all weapons, including ammo, should be removed from the house.
Lady, I agree 100% with what you said. Some people always want to see if they can find fault with everything.
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I agree with Crushed and almost said the same thing in my earlier post. IMO, the “I’ll blow my brains out” comment is manipulative and controlling. Regardless of his intention, it’s also an extremely unkind and irresponsible statement to make to a loved one. My LO said that he would commit suicide if he ever lost his independence or became too old or sick to take care of himself. It’s still a stupid and crappy thing to say, but at least he didn’t rope me and my feelings and actions into it as well. It sounds like the comment/threat has left Loretta feeling trapped, afraid to suggest that she can’t take care of him or even raise the subject of care planning. The fact is, he’s a burden right now and the fact that he will be a burden to her in the future is guaranteed. So, apparently he doesn’t recognize it or he’s okay with it or he doesn’t know what to do about it. If I were in Loretta’s situation, and if my DH were still aware of his deficits and prognosis and reasonably capable of having a discussion, I would start with “I know you may be concerned about becoming a burden on me or others, so let’s put some plans in place such as relying on professionals for your future care.” I also would not be shy about saying “I cannot be the one to provide the hands-on care, including managing behavioral symptoms in our home.” Regardless of whether DH was capable of having this discussion, or his potential negative response, I would still put these plans in place. Then she has options and doesn’t go into this feeling resentful and that she has no choice but to watch her health and remaining good years go down the drain.0
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Thanks for the reality check on driving. Even though he can drive now, I realize he might not be able to tomorrow... so he had to go somewhere today, I got my keys and said ok I’m driving you. He just looked at me and got in the passenger seat. We have one truck we both drove, so selling it is not an option.0
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LadyTexan wrote:I don’t think his statement was meant to be controlling, it was probably said because he doesn’t have his full mental capacity. I don’t think he would know what to do in order to “control” me. I’m a very strong person despite my shock and feelings of inadequacies with this diagnosis. I’m unsure of how to move forward at this point, but everyone’s advice has been extremely helpful. So thank you.Crushed wrote:LorettaP wrote:He once told me if he were ever a burden on me. He’d blow his brains out. So I’m not sure what to do here.
IMHO This is an INCREDIBLY aggressive abusive controlling statement
Its the same old "do what I want or I will kill myself in front of you " In other words he wants you to be his door matHE decides not YOU since HE is in charge
You need help dealing with that
Does he have guns?
Lady Texan response:
I was reluctant to comment, fearing the wrath of Crushed will rain down on me. My interpretation of your DH's statement is NOT the same (as Crushed's) at all. My interpretation is that your DH wants to control how he exits this life, not that he wants to control you.
Regardless, he has made a statement about harming himself and it should be taken seriously.
I whole heartedly agree that all weapons, including ammo, should be removed from the house.
My heart goes out to you dear.
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Loretta,
The fact that he got into the passenger seat is a good sign that maybe you won't have to have fights about his not driving. Instead of saying you can't drive and merely saying I am driving seemed to work out....today anyway.I am glad you have one stepdaughter who will be a help but it is important to make some plans.
Hopefully you can get some input from the neurologist re:what steps to take. In this journey every day seems to bring a different challenge. This forum is a great place to share ideas and offer suggestions.
Re: your DH statement re: taking his own life I am sure you know not to have any guns in the house. As to the interpretation that this was a manipulative statement, some posters think they are the resident psychologists even though their field and profession is the legal world.
Know that we are here to support you.
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Hi Loretta: I feel for you as I was in the same situation. 1st can you get the doctor who diagnosed him to tell him that he should no longer drive? I have found that when others interject he may be more willing to accept and remember. But if not, this is what I did specifically. I knew his could no longer see clearly so I made an appt. with his eye doctor and talked with her before we went for the appt.(I called) He was examined and she filled out a form and we took it to the motor vehicle dept and they forwarded it to the Dept. of Motor Vehicle medical dept. The DMV medical then sent us a form to fill out by our medical doctor who then forwarded this form back to the DMV medical unit. During all this back and forth, I had the motor vehicle dept take his license and give him a state ID. Then when he started on about driving I would calmly tell him that we were still waiting to hear from the DMV medical unit. I know it sounds like a lot, but he no longer hounds me about driving. If he mentions it, I tell him you have not received the letter back from DMV. While waiting for the final response, if you do not need the vehicle, tell him his daughter's car was damaged and she needs to borrow yours until it is fixed. This will stall him for a some time, as time is elusive to the Alzheimers' patient. He is also taking Lexapro (a generic brand) that definitely helps keep him under control.0
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The doctor did tell him he can’t drive anymore at the last appointment. I asked actually because I was concerned. That’s why he was so mad. He said I didn’t have to ask! I’ve been driving ever since my post. It was a reality check with regards to liability issues.0
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My father's father died when I was nine or so. We drove to Florida to Grandma's house, where my aunt met us. She and Dad and Grandma had what seemed to be innumerable, interminable têtes à tête out in the Florida room while "Mommy" and us girls sat in the kitchen of the tiny house, unwilling eavesdroppers. There was much weeping and wailing; understandable! It had been a sudden death at the breakfast table. After one such session, my father came up into the kitchen with a very set expression, and said in a low but vehement voice, "if I ever get like that, take me out and shoot me". We were not the least concerned that he was manipulating any of us. Apparently his mother had been manipulating her children down there though. He was simply expressing his utter frustration with the situation. He no more wanted to be taken out to the back forty than he wanted to walk upside-down on his hands everywhere. We girls picked up on the emotion, but even at 9 and 7 understood that Dad wasn't asking for anything but relief for himself, his sister, and his mother.0
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Hi Loretta—One of the previous posts alluded to my “solution” to the driving problem. My DH was diagnosed with AD several years ago. His doctor told him not to drive. Of course my husband forgot what the doctor said. Even at this stage of the disease, DH thinks he is fine and has no memory problems. In reality, he has no short term memory left.
Since my husband continues to think he has no cognitive problems, he sees no reason to stop driving. My kids nagged me to take away the keys and repeat what the doctor said. That was useless, so I worked around it. Since DH is so forgetful, each time we go to the car I tell him I’ll drive. When he looks for his car keys, I simply tell him they’re in the house (they are, but well-hidden) or I’ll make up another location but tell him it’s time to go and we’ll find the keys later. He understands what I’m saying for the moment but forgets seconds later. I’ve been doing this for well over a year and it works for me and keeps DH safe without agitating him.
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If there are guns in the house, get them out of there now. It doesn’t matter if what he said was a real threat to himself or a manipulation. The guns are a danger to both him and you. He has hallucinations. If one of those hallucinations should be that you or a neighbor is dangerous and he has access to a gun...... tragedy will follow.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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