Switching Gears from Wife to Caregiver isn't Easy...

All the advice here is wonderful. I too “lost” my husband to dementia. It made me realize how much I have depended on him all these years to do the taxes, pay the bills, do work around the home that requires his strength. It is not just the exhaustion of caretaking but the loss of my best friend, the one I would consult with my own worries who has known me all these years. While social workers and friends can help it is not the same and it is lonely. We are widows with a job we didn’t apply for-caregiving. When when first enrolled in a clinical trial and I was referred to as the “caregiver” I said to myself “That’s some sick joke. He is my caregiver.” This is all very sad and we are chronically mourning and since he is still present, we are often angry. The people who understand are here on this site.

After reading your bio, I think you need to hire in home caregivers to help with your husband so you can take a break every day. Burn out is real and can lead to elder abuse very quickly if a plan isn't put in place to address your needs as well as his. Both of you are affected by his dementia, especially as it begins to worsen.

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

I can relate to this. Over the past several years, without hardly realizing it, I had become a caregiver and not married anymore, but at home with a patient. I knew something was really wrong, but he refused to go to any doctor and so I was diagnosing him or getting advice from others. Now we have a neurological and psychiatric diagnosis -- somewhat, but it's all guesswork. As are the meds. My husband doesn't suffer in terms of memory or everyday cognition, but he's been diagnosed with Parkinson's dementia, which added to a lifelong history of bouts of depression and anxiety, has now morphed into entrenched and debilitating delusions, paranoia, and intractable depression. We're both in our 60s and I made the decision that my caregiving takes the form of doing everything I can for him while not sacrificing my well-earned right to living a mentally healthy life. I worked hard for the happiness, friends, and security that I've achieved now, at 63, and I won't give it up. For me, that means not living with him. For now, he's a few miles away in independent living complex with full meals, with aid visits daily, plus a psychiatric nurse twice a week. We're not rich by any stretch, but for the meantime this is working (and cheaper than assisted living). I spend time with him every other day, watching TV, bringing him a homecooked meal, reading the news. He's terribly unhappy -- but he was miserable at home, and now, at least, I can carve out my own wellness. I battle with guilt, but I have a therapist for that. On her advice, I've joined a NAMI support group.

If he is currently in the hospital see if he can be evaluated while there.
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)

Thank you for your honest post. I'm a spouse to my husband with Parkinson's disease, associated dementia (not lewy body) and is clinically blind as he can no longer keep his eyes open. The newest issues is not being able to chew and swallow (is it the Parkinson's or dementia) - who knows - seems to be same results with no good answer. Meal time is about two hours - so that takes up six hours a day with little food intake. I, like you, feel like a domestic - with the caretaker, nurse, etc. added to the mix. I will admit, I've become resentful (mostly from lack of sleep). I'm looking forward to reading some good answers - as I don't seem to have many any more.

Since you realize that your husband's personality has changed, consider that you are married to a different person. Here are a few suggestions:

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).

You story sounds identical to mine. I am 5 years into the first time I realized he wanted me to drive all the time because he couldn't remember how to get anywhere anymore, not even a mile up the road to his best friends house. He went through the sexual interest in women from his past and trying to meet new ones on line. He even went as far as calling and writing letters to old girlfriends, which, as you can imagine, really pissed me off. He could write the letters but couldn't remember how to mail them. When I found the letters he told me it wasn't him that wrote them. That's when the light bulb went on that his memory was much worse than I thought. Another year goes by and I asked him who he thought I was and he kind of laughed and said you are my sister why would you ask me that? So that's when I went on line found Teepa Snow and Dr. Natalie Careblazers (excellent youtube videos). This one helped me more than any other site. I told his GP doctor about all this and he gave a simple test to him. He asked him to draw the face of a clock, I was shocked at the results. It looked like a Dali painting and my husband was an artist and graphic designer. Definately go to youtube Careblazers and join up. It will help immensely. Sorry for your loss of your best friend.

I can fully understand your feelings and agree with them. Right off the bat, I can tell you this. It is dementia and illness and it is going to get worse and worse. Think now if you can and will handle this. Not everyone is suited to be a caretaker or they have their own problems and responsibilities. Think ahead and plan out of the box. Now here is the clincher - I don't care who or why, if you find that person is damaging you and slowly making your life hell and you are going downhill, stop at once and do something. That might mean a caretaker or placement in a facility. The goal is to start thinking and planning and doing lots of research now so you are ready when the "s*** hits the fan". You do not deserve what is coming.

One thing that I have learned from my very long caregiving experience with my mom in our home, is that my husband and I already discussed that neither of us wish to burden the other with long extensive caregiving duties.

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 have had the same issues with my husband. After putting him into a board and care home the situation is better, however heartbreaking. He cries to come home and begs me constantly. As a pro football player, he is much too heavy for me to handle. It is just heartbreaking. I don't know how long I can afford the fee which is almost $5000. but I am hanging in there.
Look into getting help as you are surely going to need it. Good luck!