Collateral damage from dementia
I am sole caretaker for DH with VD for several years. Like all of you, we care, show up everyday, we do our best, yet this awful disease affects us too. It not only affects our mental and physical health but also our relationships with friends and family.
My 2 grown sons live on the opposite coast and I have not seen them or their children for almost 4 yrs. I want and need to see my family. His being sick should not stop me from getting to visit in person. I want to plan a trip back East this summer for 10-14 days. My stepson and DIL live close by but I have not asked them to help much for caregiving. I really thought I could do this alone, haha. I am going to ask them if they will host my husband for the 2 weeks, in their home, while I'm gone. DIL doesn't work, their kids are grown and step son works 6 days a week, often commuting out of town. It sounds like a huge imposition, especially for her, but I am not ok not being able to visit my sons and family. Likely this disease will continue to impact us for a long time. I need to think of my needs and my relationship with my sons and grandsons.
If stepson and DIL do not step up, I am going to look into a short term respite in a facility. That will be extremely hard on DH, change of surroundings, change of routine, he won't know anyone there and will feel abandoned. Has anyone gone the short term respite route? Any suggestions?
Comments
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If your son and DIL have helped previously, I would go straight to the respite stay in a facility where the environment and programming are dementia-informed and the staff well trained.
Most places near me require a month-long minimum stay; a few are more flexible with 2-week stays as well.2 -
Could your stepson DIL host at your home instead? What is easier on your DH will be easier on everyone. Maybe do some brief "trial runs" with stepson/DIL at your house to see how it goes. I think someone having to deal with DH alone for the first time as a two week stay outside DH normal environment/routine is a lot to ask.
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Go for the respite place/ even if you have to book an entire month. You need the break and it will allow him time to settle in.
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It is my impulse to recommend the respite stay, on the grounds that staff are trained to help a PWD. If the stepson and DIL haven’t been caring for your husband previously, then asking them to learn how to do it in their own home (unfamiliar to your husband, I assume?) looks like a recipe for distress all around—and lots of phone calls to you while you are trying to visit your family.
My next-door neighbor used respite care a few times for her husband WD while she visited family in another country for a couple of weeks. Later on, when care at home became impossible and the husband needed to move into a facility, he went someplace where he had already been and where staff had met him.
You do need to see your grown sons and their families, and you need to set up a situation at home that will allow you to maximize your joy. Answering the phone all the time won’t help that. Just my two cents.
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Continuity, specialised, kind and directed care is needed for all our LO. Our daughter, who is so kind and considerate to her Dad would not be able to give 24/7 what is required, particularly for more than a few days, it’s just too much to ask and the repercussions might not be good. Shaving, washing, dressing, listening, sitting, feeding. I understand only too well about missing children, our son is 1500kl away it makes me so sad. It seems a respite centre would be the best place. If it works it might be a good starting point so you could have more visits. Good luck, thinking of you, I too haven’t been brave enough to leave my DH. It sucks no matter which way we handle it.
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TY all for your honest input. I was concerned about leaving him in unfamiliar surroundings. We have only bern apart 2 nights in 4 yrs, one night after a stroke and the other after carotid artery surgery. I will check with his Dr to find out if he has the capacity to refuse to go. At what point does the PWD not have capacity to make their own choices.?I do agree ith MCF would be able to handle him better.
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When you can't leave him alone, he needs someone else to make his decisions. And you need a break. You haven't had a day off in years.
In your place, I would arrange for a month in MC. Take a week to buy a new sun hat and do whatever else you need to get ready for your trip. Take another week after you get home to unwind and catch up on whatever didn't get done while you were away. Then see how he's doing in MC. Some people find their LOs adapt so well during respite that there is no reason to bring them home. IIRC you said that he spends his time eating, sleeping, and watching TV. He can do that in MC as well as anywhere.
You may find that this is your opportunity to find the intellectual, charming person you always were, and visit your husband from time to time while having a life.
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Ty Carl. I am really looking forward to thos golden opportunity to find myself again.
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I whole heartedly agree with Carl on this.
Unless you need a doctor's signature attesting to DH's incapacity related to a springing POA, I would save the co-pay. IME, most PCP and neurologists have little idea about the challenges of day-to-day dementia caregiving. This would be especially true if your DH is one of those with considerable cognitive reserve who can successfully showtime in the office. You know best.
I would loop your local son into being the emergency contact while you are out of town. MCFs are obligated to contact you for certain minor incidents (minor falls, infectious disease positives in the building, etc) that are often more of an FYI than an action item. Your son can decide if it's something you need to be made aware of.
One concern I would have would be if your DH has challenging behaviors, you'll need to address them pharmacologically ahead of even a temporary placement.
Have a great trip.
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Thank all of you for the great ideas you have given.!
I don’t know what type of POA you have. I had a DPOA and I was able, though not easy, to get the physician, to chart that my mom was unable to make her medical decisions. Then I was able to sign my mom in.There is an organization out there called Carepatrol. If you just google Carepatrol, it will come up. You will insert your ZIP Code and you can find out if there is someone in your area. They are who helped me get my mother placed. They work like an insurance agent. You do not pay them anything. They are paid by those they work for. I personally found them very helpful in getting my mother placed. It is an option, possibly if they’re available to help make it easier for you. It’ll still be enough..
I hope everything works out for you and you’re able to get a little down time
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I have DPOA for legal and medical. He has VD but Dr does not want to stage him and says it really doesn't matter since we are working on palliative care now. DH flat refuses to go to neurologist or geriatric psych. He is able to carry on conversations, does all ADLS independently and is ok to be home for a few hours independently. I know he will need help while I am gone for an extended period. I have limited options. Stepson does not seem interested in getting involved with care giving responsibilities. MCF is my best option, now going to navigate how to make that happen. We both have drs appts Tuesday and I will be asking Dr direct questions pertaining to this issue. I will also be contacting the MCF to learn about their respite offerings and how the transition takes place. Tysvm for your help. Your support means so much to me.
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Retired teacher (as am I),
You are in a very tough situation and I don’t envy you. Two of my three grown children and their families live within walking distance of my home, but I could have never, ever asked them to care for DH overnight, let alone for two weeks. Having cared for DH 24/7/365 for 11 1/2 years, I knew it would be more trouble than it was worth. I had researched MCF’s for several years “just in case.” I decided to try a 30 day respite at a stand alone MCF, where only Alzheimer’s and dementia patients were served. They had a minimum two week respite offering, but at their recommendation, I decided to try 30 days.
Unbeknownst to me, the kids had been plotting behind my back, preparing to advocate for placement because I spent absolutely, positively no time with them or my grandchildren, even though they lived so close. (I should add, that by this time, DH no longer recognized me or any family members.) When we dropped DH off for his 30 day respite, my oldest son announced that when the 30 days were over, “we would not be bringing daddy home.” DH resided at this memory care facility for 17 months until he passed in April, 2023.During the respite and the ensuing 17 months, DH was content, well loved, and well cared for. I was able to acclimate myself back to a somewhat normal life. I was able to spend time with my kids and grandkids, attend their concerts, sporting events, plays, and school activities. I was able to visit my other son and family in TX, sleep well at night, and shed the feeling of being on constant high alert. I was able to visit DH and love on him as his wife. I had hoped and planned to keep DH at home with me forever; I miss him every day of my life. But I don’t regret my decision for respite or placement. Do what you need to do; your DH will not get any better if you are away for two weeks, but you just might be saving yourself. I wish you well.💕💕
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Many thanks for this information re: respite stays! My son (only child) lives in Seattle. We are about 3K miles apart.
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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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