Has anyone been in this spot?
It is time for DH to go into s memory care facility. He can barely walk now and I fear for his safety should he get up during the night.
I kept delaying as he also has incurable Leukemia ( docs do not want to treat due to further risk) that makes him vulnerable to infections. With stage 6 ALZ and low nutifils? Has anyone else been in this spot?
Comments
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BH have you thought about calling in Hospice as well? it might help everyone. Yes he is going to be very susceptible to infections of all sorts, an infection might well be his final event. But if you know that ahead of time, you can be prepared at least mentally. I have not been exactly where you are, although my partner (also stage 6) has an incurable lymphoma. When it recurs we will not treat, just as you are doing, and she might well be on the same path. The other thing i really fear for her is falls. She is falling already, but so far has escaped serious injury. However I know it's just a matter of time. We're not quite hospice level yet, but one more event will put us there in all likelihood.
Let us know how it goes.
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Thank you. Your kind response is so helpful. It id difficult to puthim in harms way. I do not think I can live with myself . Thinking of moving to a ranch house - keeping him at home until God decides when and how to take him. I
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I wonder if an actual hospice facility might work for you rather than an MC or hospice services at home?
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Hospice may be a good alternative to MC or addition to MC. It sounds like he is near qualifying for hospice from a dementia standpoint and perhaps with the leukemia diagnosis he already qualifies. I think asking for a hospice evaluation is a great idea.
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does that mean I sm giving up on life for him?
I cannot do that.0 -
no it doesn’t. He is approaching the end of his life, and it is just accepting that reality. I truly mean that with all kindness
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Hospice does not mean you are giving up. Hospice’s goal is to make life easier for the patient as well as the family. Studies show that people with the same medical issues live LONGER when they are attended by hospice than those who dont have hospice.
Call hospice + have an assessment. If he qualifies, try the program. If for whatever reason you are not satisfied, you can withdraw at any time for any reason. What would be the downside?
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Hospice has been a blessing for us. They provide comfort care. All nurses, doc, therapy, etc., come to him. They are so kind and patient with my husband. They are helpful and understanding with me. It cannot hurt to have them come in and meet with you. I was hesitant but have come to realize it's not giving up. It's giving my husband the best care and quality of life possible.
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He most likely will qualify for hospice based on the nontreatment option for leukemia. Hospice doesn’t murder people or shorten their life span. They just make the person and family’s life more comfortable.
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Unfortunately your husband will not be any safer from a fall in MC. Have you given consideration to having someone come in for night time hours and using a commode downstairs?
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@Brokenhearted in Illinois
I am so sorry you are facing this decision. You are not "giving up", your husband has 2 terminal conditions that are causing his body and mind to "give out". Hospice could help support you both through what is next to come whenever that is.
He would be prone to the same fall risks in MC. At a certain point PWD are not secure on their feet and fall. Dad fell at home, dad fell in MC. I think he fell a little less in MC because he'd progressed more (so he was less likely to roam) and because the facility was designed with rails on all walls. In MC he had a team to safely lift him rather than a solo 82-year-old woman with compressed discs, scoliosis and osteoporosis. Motion detection could help you meet him as he tried to get out of bed. Hospice could set up a bed and commode (if needed) on your first floor. You could learn to use a hoist and get private aides in to assist along with hospice services.
Selling and moving, at this late date, is probably not a realistic approach in a lot of markets right now. Depending on where you live there may not be much single floor stock available. There's almost none where I live. Selling a home with a late stage PWD is going to be logistically difficult and likely upsetting to your DH. When you factor in the costs of selling your home and buying something else, it might be cheaper to stay where you are and hire help where you are now or move to an elevator building/first floor apartment temporarily.
HB3 -
Your husband has two terminal illnesses. Accepting that reality is not giving up. The goal of hospice care is to make the time he has left as good as it can be. They are experts in providing this type of care.
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As far as falls go in MC, that will happen but there is always someone around to see and they have multiple people that can pick them up if they aren't hurt. My DW fell several times at home and once so far in MC. I'm not tall and neither is she but I weigh 190 pounds and she weighs about 140 and it was all I could do to pick her up in the middle of the night, without hurting myself, after she fell out of bed. The lifting positions you find yourself in are awkward and cumbersome and to lift someone by yourself is virtually impossible many times and very very easy to hurt yourself in such a manner that you also would need help. Very difficult and dangerous trying to manage falls by yourself.
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Similar spot…my spouse is in late stage VD and also has small cell lung cancer. She has become mostly bedridden, and is a huge fall risk (I had to call 911 this morning for a lift-assist as it's impossible for me to lift her).
She is accepted and going into a lovely board and care home today (she thinks she is going to "rehab") and will be on hospice care. It's taken a long time to get to this place, but it's absolutely right for her.
I hope you can get to a similar space.
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thank you to everyone. DH has expressed that he is still enjoying his life. He does not want to decline live saving measures when he gets another infection due to leukemia. I think you have to agree to that if you go on hospice.
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Let's say your DH develops pneumonia. If he develops respiratory failure, would you want him to have a breathing tube and artificial ventilation? If his heart stops, do you want CPR? At this point, I think you should be the decision maker and not him. Personally, I do not think ICU care, artificial ventilation and CPR will help your husband - they will only prolong suffering.
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I believe one is entitled to a natural death. Based on my experience, intibation ultimately is a slow death for older folks So no, I do not think it extends life and is pure torture. However, I would not want to withhold antibiotics. He actually has had pneumonia - antibiotics cleared it. You raised. A great point. I sm going to talk to DH .
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My only other thought is that I wonder how much of that conversation he will understand, given that he has dementia. I think it’s important to remember that those discussions can potentially be very scary for people without the executive functioning and reasoning skills to process that information. People with dementia rely on their family members at some point to spare them these stresses (at least, this is my opinion). I am sending you comfort and peace with whatever lies ahead.
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We have only been married six years and he never gave me directives. We never imagined this scenario.
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Medicare supported hospice does not require a DNR from what I’ve read.
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@Brokenhearted in Illinois
I am so sorry you are in this situation. It must be difficult to have the weight of the decisions without decades together to discuss such things as they happen to others around us. I've been working on an Advanced Directive with my mom and I've known her for 67 years. I have the legal piece to make decisions, but she's hard to pin down regarding what she'd want exactly. And it's complicated because she didn't always understand the downsides to various interventions.
Trying to have a conversation with someone in stage 6 is to break the cardinal rule of Dementia Fight Club— don't try to reason with someone who no longer has reasoning skills. Alas, the time for that conversation has passed.
This is an article about the use of antibiotics in hospice.1 -
Michael is only 74. Diagnosed 2 years ago. Leukemia reoccurred last year. 🥲
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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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