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SandsB Asked April 2020

How do you respond to a spouse who says they love you, but will not let you connect with brothers and sisters you need for support?

My spouse has dementia and feels she can stay at home by herself while I travel to see out of town relatives. I’ve told her I can’t leave her overnight, we have no one to stay with her, and she refuses to go with me to see family I need for support.

Llamalover47 Apr 2020
She obviously cannot stay by herself while you go to visit family, else you wouldn't have posted. Respite is needed for her.

Taarna Apr 2020
You need a respite plan. If you need to travel, then she needs someplace to go or some one to come in. If you are sick or injured, the respite plan becomes an emergency "back-up" plan as well. I would opt for a caregiver to come in rather than a place to stay since your spouse will be more relaxed in her usual surroundings for short periods when you must travel.

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dogparkmomma Apr 2020
It sounds like you need and have needed some respite in the past. She will always resist going to a facility so if you have her go now, or you don't, she will still resist when she really needs to be placed. There is no reasoning with people in this condition. So really once you can travel, start looking around for a place near your home where you can set her up for respite care. Don't discuss it with her before hand; she won't agree. You could bring her there for lunch first but again, if she won't remember being there, it probably won't help. So just bring her, tell her she will be going there for a week's vacation and go on your way. It will be best for you to have regular time off. If you think she is more likely to be happier with someone coming into your house, you can try that but generally I am a little more paranoid about that without some supervision of the person staying in the house.
One thing I would suggest is, when you are looking for a place, ask them if they had positive Covid 19 cases at their facility. you might also check with your county. Because of the discussion that there can be re-infection, I would look for a community without prior cases. Now, there could have been cases that were never diagnosed but this is a whole new world of things to check on.

Grandma1954 Apr 2020
While we have some "down time" and you can plan contact a few Memory Care Facilities and ask if they will do Respite for a few days. Ask cost as well as what paperwork needs to be completed prior to the Respite stay. Then you can set up all the appointments you will need to get that done. (most places will require TB skin test of blood test as well as possibly being up to date on vaccinations and a doctors note indicating she has no medical problems, or if she does what they are.
Choose a place that you might consider for placement later if the need arises.
Do not give her an option, she goes to Respite. You need to get some time away from the "caregiver" person to a person that can relax and unwind without having to worry what she is getting into or that you will have to change her, or leave because she is getting "antsy".
Another option, invite relatives to come visit you.
This might also prove to be a problem because a lot of confusion, a lot of people excess noise and a disruption of routine can upset a person with dementia. And it still does not give you a break that you so need.

lealonnie1 Apr 2020
Once the restrictions are lifted in the country and we're safe to travel once again, I wouldn't give your spouse a choice about this situation. You can get her into respite care in an Assisted Living Facility while your gone, or, you can hire someone to come into your home to care for her while you visit your siblings. It's not a choice, it's a MUST, as you cannot leave a dementia patient home alone. She doesn't have to travel with you........you're most likely better off going alone and having some down time YOURSELF, you know? Just set down some boundaries with her, that's all. It's not about what 'she wants' really, because there comes a time when care plans take precedence over desires. YOUR desires matter too, don't forget. Sometimes a caregiver gets SO caught up and lost in the care of their loved one, that they lose themselves in the process. Dementia affects EVERYONE, not just your wife.

When the time is right, definitely go for a visit to see your relatives. Get out of the house for a while and feel good; it's okay to do that. It's also okay to get your wife into respite care or to hire an Agency to bring in a caregiver. Your life is important too, my friend.

Best of luck!

Countrymouse Apr 2020
She's not stopping you connecting with your brothers and sisters. She is declining to connect with your brothers and sisters herself.

So the difference of opinion is on another subject altogether, namely: can she manage by herself at home overnight?

So, whose decision is that to make? Hers or yours?

Chizzle Apr 2020
This is the United States of America and freedom of speech comes with being an American. Those who think they can control who or who not a person can talk or see, better have a very darn good reason for interfering with basic rights. I guess after watching true crime, possessive personalities give me the chills. Act before us too late, do not hesitate to seek outside help.
lealonnie1 Apr 2020
Er, this is not an episode of true crime shows on television. The OPs spouse has dementia and nothing a demented person says or does makes sense. Their behavior has nothing to do with 'freedom of speech' or 'possessive personalities' either...........it's a disease of the brain that does the talking! You'd be better off suggesting the OP learn more about his partner's disease than anything else!
Sunnygirl1 Apr 2020
I agree about not visiting in person right now. With Covid-19, it's not safe or even legal to visit, but, when the restrictions are released and it's safe, I'd secure care for your wife so you can travel and visit with family. With dementia, she just can't see why she's not okay. She just can't get it. So, I wouldn't argue or debate it, just make the arrangements with someone who is competent and trustworthy to provide the care, regardless of her protests and keep it cheery and light. You might consult with professionals. Some places provide respite care for family caregivers for free. I discovered this from a local Senior Center once. I wouldn't insist that she go with you, because, she likely is not able to do that. I realized after the fact that my LO was confused and anxious about visiting people, even family members. That's why she wanted to stay home.

lindaz Apr 2020
How about skyping with your relatives? Or maybe chatting with them on-line? This would give you at least some of the much neededsupport from family members and it's something you can do while COVID-19 is going on.

JennaRose Apr 2020
I agree with JoAnn29 that no one should be traveling with COVID-19 going on.

As far as leaving someone I can only talk about when I leave my elderly Mom (she has alzheimer's/dementia) when I need to pick up her meds or buy food. My Mom becomes scared for the short time I am out which is due to her dementia as I represent safety and security in her world.

JoAnn29 Apr 2020
With a person suffering from a dementia, their home becomes their world. Its comfortable and familiar. The outside becomes scary. They no longer can be reasoned with. Like a small child, they become self-centered. They lose empathy. They can no longer see your side. If you were to take her with you, she would probably want to come home an hour after you got there. They get anxious when out of their comfort zone. Not a good thing.

At this point, no one should be traveling. But when this is over, maybe call around and see about respite care in an Assisted Living (cheaper) or Longterm care facility. Yes, it will cost you but she will be safe and cared for. Then you can visit ur relatives with peace of mind.
SandsB Apr 2020
Thank you. Great response and helpful. I agree with the “comfort zone” and that she would probably want to come home after a few hours. Still makes it difficult to realize that I may not be able to see my siblings and friends to get the support I need. She would not want to go to an assisted living facility, even for a weekend, to give me the space I need from time to time. She is only 65, and visiting an assisted living home would only make her more resistant to that as a future option as she becomes more affected by her dementia.

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