DH getting weaker

jehjeh

My hubby has been treated for metastatic prostate cancer for 2 years. Last week we learned the Eligard is not working as well so we need to add another medication. This will likely make him weaker than he already is. Walking more than a few feet is already difficult so we have chairs everywhere he may need to sit and rest. Wheelchair can get him down the hall if it comes to that, but won't fit thru bedroom and bathroom doors. He uses a walker but that's no help when legs threaten to give out. I also have to lift his legs into bed after he sits on the side of the bed. This is becoming more difficult because he offers no assistance anymore.

Anyone have ideas, solutions? I can usually figure these things out but this has me stumped. Planning ahead for what is to come.

DH weighs 220 lbs and I'm 140.

jehjeh

https://alzconnected.org/discussion/73242/dh-getting-weaker

Forgot to mention he's in Stage 5 of dementia in my estimation

tonyac2

As far as the leg lifting goes, I feel yah, I’m in the same boat. My husband is around 260 and the legs are not getting any lighter. If it’s possible, maybe try to encourage him to use the wheelchair as often as possible. My husband is wheelchair bound, so I need to keep an eye on him that he doesn’t bend over too far and fall out.

midge333

Can you move a bed and bedside commode into the living room? Can the doors to bathroom and bedroom be widened to accomodate a wheelchair? If not, can you move to a different house or apartment that will accomodate a wheelchair? If none of these are possible, placement is the only other option if your DH becomes wheelchair bound.

jehjeh

https://alzconnected.org/discussion/comment/245175#Comment_245175

Yes, leaning to the side and bending forward are issues here too. I really can never safely leave his side.

jehjeh

We do have a bedside commode but because of the dementia he won't always use it. Argues that he needs to go into the bathroom. It is very helpful when he does use it. I think I'll see about widening doors as a next step. Thanks.

jfkoc

Some thoughts;

Ask the Dr to send an occupational therapist to your home…also a physical therapist

Look into a transport chair…they are narrower

Quilting brings calm

why is the doctor adding a new medication to treat the metastasized prostrate cancer when he has another terminal illness called dementia? Does the doctor know about the dementia? Does your spouse understand what he is being treated for and does he tolerate the treatments well? At some point he isn’t going to understand the treatment nor will his dementia allow him to tolerate it.

Carl46

QBC makes a good point. My wife died of cancer last month, and it was better than treating her cancer so she could die of dementia next year. I miss her, but I'm not sorry I refused treatment for the cancer.

Pat6177

I agree with jfkoc. Have you tried a male urinal?

Have hospice evaluate him. You don’t have to place him on hospice if you don’t want to stop treatment for the cancer. But they will provide a hospital bed and some other durable medical equipment for free.

If he falls, call the fire dept to get him up. Don’t even try to do it yourself.

SDianeL

I would contact hospice even if you choose to continue the cancer treatment. As he gets weaker he will more than likely become totally incontinent and bedridden. Hospice provides many things that will help you. I would call them right away. I would stop the cancer treatment. It’s a very difficult decision, but why prolong his suffering with dementia? There is a Hoyer lift to get him in and out of bed. Not sure if hospice provides that. Maybe someone else can post about that.

harshedbuzz

I am sorry you find yourself faced with such decisions. Is the weakness a function of his cancer or some other mobility issue? Bring in OT and a PT to assess your home and make suggestions for modifications to allow you to keep your DH home longer. This would you to consider whether the trad-off of time, money, expense and disruption to your DH are worth even considering. I don’t think my dad would have tolerated the inconvenience of contractors working in the home. YMMV.

I would take some time to clarify your goals for your DH’s care focusing on what is most important to you. Are go doing the additional treatment to add quantity of time? What sort of side effects come with the new medication ad how inconvenient are the logistics of administering it? Is additional treatment to preserve mobility by avoid a metastatic fracture of the pelvis?

Are you planning for DH to remain in the home or are you considering MC at some point? It might be more prudent to place him now as most MCFs require a degree of ambulating on entry to the community. If he has a fall and a break, you’re looking at a SNF at considerably higher costs and potentially no private room or dementia-informed care/activities.

HB

l7pla1w2

https://alzconnected.org/discussion/comment/245228#Comment_245228

HB makes excellent points.

I do not mean the following disrespectfully. When our dog was 15 1/2, he was obviously failing and suffering. We contacted a vet who does in-house euthanasia. We asked her, "How do you know it's time." Her answer helped us decide. "Are you keeping the dog alive for you, or for the dog? What's his quality of life?"

Take time to clarify your goals. What outcome are you hoping for? Don't forget that your quality of life is important, too.

CampCarol

Lots of really great advice above. Just posting now to comment re: SDianeL’s query above. DH is currently on hospice, they brought a hoyer lift to the house. He’s bedridden, so I told them he didn’t need it. They explained it is part of their durable medical equipment package and it’s now sitting in my living room. 🤷‍♀️

harshedbuzz

To the others who are shaking their heads over treating cancer at this stage of dementia.

It’s important to remember than cancer is more than one disease. Treatment, symptoms, pain levels associated can be very different depending on the organ and kind of cancer. Dad had a recurrence of prostate cancer just before he was diagnosed well into the middle stages. It had not metastasized and we hoped to avoid that as one common result of that is sudden loss of mobility due to a fracture of the hip or pelvis. Even after his diagnosis, we continued with Lupron (similar to Eligard— different brand) to avoid that. Treatment wasn’t particularly inconvenient (an IM shot twice yearly) and we hoped to avoid the reduced testosterone levels might help calm down hyper sexual talk and aggression.

Most often the next drug suggested when ADT shots are no longer as effective as they initially were is an oral daily pill. It does have a significant possibility of side effects but it’s still an option to consider.

HB

jehjeh

https://alzconnected.org/discussion/comment/245285#Comment_245285

Thank you harshedbuzz. I have been second guessing myself since reading earlier posts. I should have followed up, I’m glad you did. This is not like Chemotherapy with all of its often horrible side effects. Really, occasional hot flashes have been the most bothersome side effects DH has experienced until now. (2 years in) The weakness and fatigue have only begun recently and fatigue just means he sleeps more, which is fine. The benefit of this treatment is that is stabilized his metastases in his bones so pain has not become an issue.

I’ll be speaking with the compounding pharmacist tomorrow to learn more about the daily pill they want to add. In the meantime, home health begins tomorrow (RN, PT and OT). Hoping they can provide some ideas I haven’t thought of.