First of all I want to say how much I appreciate this site! If you have read my bio then you see what led up to me finding this site and all the helpful members. After a year of seeing signs of my husband's mild cognitive impairment (HYPER-sexual interest with a multitude of women online, memory loss and irritability) I am JUST STARTING to wrap my mind around having to interact with him differently. It's very, very hard. I watched a video wherein they said to "anticipate, tolerate and don't agitate" and I have failed at each and every one. He had a wellness exam last Wednesday and the day before I called the doctor's nurse to explain my suspicions but because of my husband's severe edema, he was placed in the hospital ASAP and the cognitive issue was not addressed. Perhaps it will be at his follow-up visit on the 17th. To date, though, the cognitive impairment has only been diagnosed by ME and not a doctor. All I know is this person I'm living with is not my husband and I can no longer respond to him as a wife....only a cook, maid, nurse, etc. I find myself being very resentful. I need to develop a thicker skin and stop personalizing things he does or sometimes says. Any suggestions and/or commiserations are welcome!
Look into getting help as you are surely going to need it. Good luck!
I get 10 hours of aides a day. This helps but I have to stay close by as her bipolar disorder makes keeping aides difficult. Also, with a narcissistic personality, she doesn't think anything anyone does is ever right or good enough for her. Also very few aides are trained well enough to do a thorough job.
She was diagnosed wit Advanced Vascular Dementia this past fall. Her days vary as to who she is and what she remembers.
long term care is expensive and not planned for early enough. Often times the wives take it on themselves as they tend to outlive men.
Please find a support group to attend. Perhaps virtually or find an in network therapist.
You must take care of yourself. You need help in seeing an honest picture of what’s coming and what choices you have. Choices mean change and change is something we humans avoid because of the unknown.
There’s no easy answer but having knowledgeable professionals that deal with memory care(dementia) is a place to start.
You have a lot on your plate. Certainly, it is your choice to make if you do wish to be the primary caregiver, but don’t hesitate to ask for help when needed.
Also, don’t feel badly if you find that you are not able to continue being his primary caregiver. Placement in a facility is a necessary in certain circumstances. We can then become a strong advocate, overseeing their care without the anxiety of the day to day burden.
I now have an aide who deals with my husband's many physical issues, and even though I still resent being cook, maid, nurse instead of wife--and accountant, supply provider, doctor and medicine coordinator, family communicator, etc.--I can (well, I have to) handle it.
1 - Accept that this "person" is who he is. You will feel loss, loss of the person your husband used to be. It is OK and normal to feel this way. Stages of loss are 1 - denial (that there is a loss), 2 - anger (probably what you are feeling now), 3 - bargaining (usually seen in ineffective methods to get the past back), 4 - depression (the sadness when you realize that this is permanent), and 5 - acceptance. You can get to acceptance, but realize this is a process.
2 - Your husband needs evaluations. Before your husband is discharged, make sure a doctor evaluates your husband. Don't be surprised if a neurologist an/or geriatric psychiatrist are consulted. You might want to demand a neurologist since strokes can cause the types of behavior changes your husband exhibits. With some types of dementia, medication can help "get back" more of the husband your remember, but medication will not be a permanent cure since they do get to a point of not working. Make sure your husband's doctors explain the usual course your husband's dementia will take so you can be prepared for his life changes.
3 - You need help. Caregiving is probably the most difficult job in the world. Before your husband comes home, enlist the help of family, friends, members of faith community, and paid help to lighten your caregiving load. You need enough people to give you time to meet your own needs: 7-9 hours of sleep every night, 3 daily meals at reasonable pace, time off to see your doctors, and time off to refresh your soul (time with friends and activities where you also do not have to care give).
Talk to husband about it.
Prayers.
He's not a Veteran and we do not have Long Term Care Insurance. He has four children and the only one who is NOT estranged lives in California. I now have a LPN coming to do his foot care every other month which I may increase to every month. I was hoping that would be a segue into occasional "visiting angels." We have financial means for that but probably not for long term memory care. And my husband is sharp enough to be concerned about what I will have left to live on so he's very careful about expenditures (except, of course for that $720!). Plus he is very reticent about having ANYONE but me tending to him.
It's my belief that he has the dementia that only affects the one part of the brain, although I've seen a sharp decline in memory loss and confusion in just the last few weeks. Hopefully this will be addressed at his follow up visit.
I tend to live in denial and procrastinate so I appreciate both of your comments. I'll try to be more proactive and stop living one day at a time LOL. Thanks!
You should also talk to the hospital Social Worker.
Is your husband a Veteran? If so it is possible that the VA can provide some assistance.
One of the things that you might want to do while he is in the hospital is to talk to an Elder Care Attorney.
One of the other things you need to line up and have in place for when he comes home is caregiver help. You can introduce them slowly, more like help for you..not for him. After he is comfortable, make a run to the store while the caregiver stays with him. He will get used to it, it may take a bit of time.
At some point you need to decide if you are going to be able to safely care for him at home or will Memory Care be a safer option. And I mean safe for you as well as him. (Again if he is a Veteran you may have the ability for more help or even be paid yourself for the care you give him. Rules have changed about paying spouses)
It's a good idea to get DH to the doctor or neurologist for a full workup so meds can be prescribed if he gets aggressive and so you can call on the doctor as needed. That's important to get a diagnosis and support, not just from the doctor but from friends, family and even an in person local group, perhaps. It's A LOT for you to deal with alone, and you shouldn't have to.
Go to alz.org and read up on what to expect. Read The 36 Hour Day and search for other books on Amazon so you can learn all about dementia. Teepa Snow has some great videos on YouTube as well.
If you have financial resources, look into Memory Care Assisted Living for DH when things get too difficult to manage at home.
My mother has moderately advanced dementia and lives in a Memory Care Assisted Living place herself. There is no way I would be able to manage the level of care she requires at home, that's for sure. I thank God every day for the great care she gets 24/7 over there, too.
Wishing you the best of luck with a difficult situation