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Losing ability to walk
McCott
Posted: Monday, August 10, 2020 11:53 PM
Joined: 8/22/2017
Posts: 490


My husband is 6.5 years since diagnosis, solidly stage 6 (but only urinary incontinence so far) and moving into stage 7.  Over the past weekend he has been losing the ability to walk.  I am recovering from spinal fusion surgery and can only do so much, and certainly cannot lift him off the floor where he seems to end up a lot recently.  My son and his strong fiancée live with us, but they both work (luckily), so I will be 'home alone' tomorrow and very nervous.

I realize this may mean I have to look for a placement, but please tell me if this happened for your spouse or PWD and how you dealt with it.  

He is sleeping in a bed set up in the living room because the stairs had become too difficult, so it's just going to bathroom and kitchen, short distances, but he cannot do it unassisted.  I have a walker (from my own surgery) and that has helped a bit in the past, but not really anymore.  He has ended up slowly sinking onto the floor several times this weekend.

I think I will go buy a light wheel chair tomorrow after our son gets off work -- a stop gap measure.

 I am in some denial here, as I wanted to keep him home as long as possible, by which I meant, to the end.


Army_Vet60
Posted: Tuesday, August 11, 2020 12:51 AM
Joined: 6/21/2019
Posts: 800


It appears that you've done everything that I did for my wife, except get him evaluated by Hospice.

When my wife started losing her ability to walk and navigate stairs, I had Hospice evaluate her and she was accepted.

I got a hospital bed and moved her into the living room.

I got a wheelchair so I could still take her out.

I got a portable toilet and set it by the hospital bed so she didn't have to worry about getting to the bathroom in the middle of the night.

I got the services of nurses three days a week to help me clean her and change her clothing.


McCott
Posted: Tuesday, August 11, 2020 1:25 AM
Joined: 8/22/2017
Posts: 490


Hello Army Vet -- I asked his MD about hospice and he said that my husband was not six months from dying so he didn't qualify for hospice.  On this site, I have gotten a different impression.  JFKOC once said that hospice was basically home health care, but I don't know how to proceed if his MD won't sign on to hospice.  Maybe his not being able to walk will change the doctor's mind.  

I am very worn out and still recovering from the surgery I had, after he pulled me down (accidently) and broke my back.   My husband has 10 inches (6'2" versus 5'4") and 60 pounds (185 versus 125) on me, so I am at a distinct physical disadvantage.  I used to be 5'6" but lost two inches after my burst vertebra and spinal fusion surgery.

Can you tell me anything more encouraging about hospice?  I live in Washington state.


biker013
Posted: Tuesday, August 11, 2020 2:04 AM
Joined: 1/11/2020
Posts: 192


From this site AND from my own experience some hospice agencies will take PWD even if they are not 6 months from dying.  Have 1 or more hospice agencies evaluate your DH - it can't hurt to try.
Army_Vet60
Posted: Tuesday, August 11, 2020 2:12 AM
Joined: 6/21/2019
Posts: 800


I took my wife to her neurologist to find out why she was having trouble walking. He examined her and said it appeared she was developing Parkinson's. I asked him if she was ready to get evaluated for Hospice because she was declining so fast and I needed help with her. He gave me the referral.  I didn't get the impression his was the final word on whether or not she was qualified. That was Hospice's call.

I can't remember what the chart was called, but the Hospice person evaluated my wife and she showed two stage 7 symptoms on the chart. That was what got my wife qualified, not whether or not she had six months left or less left.

She was covered by Medicare so everything ALZ related was paid for. I was responsible for paying for her blood pressure medicine and pain medication for a spinal condition.


McCott
Posted: Tuesday, August 11, 2020 2:44 AM
Joined: 8/22/2017
Posts: 490


Biker and Army Vet:  are you saying that I can somehow contact hospice on my own without a medical referral?  I don't have any idea how to do that but will start Googling tomorrow.

Army Vet - what kind of wheel chair did you get?  I am not planning to take him out, just to wheel him around our first floor.

Thank you both, Mary


biker013
Posted: Tuesday, August 11, 2020 2:54 AM
Joined: 1/11/2020
Posts: 192


Yes Google "hospice" in your area.  Try for a local agency first.
Victoria2020
Posted: Tuesday, August 11, 2020 4:37 AM
Joined: 9/21/2017
Posts: 515


perhaps these folks can give you advise:

https://www.alz.org/alzwa/helping_you/care_consultation

 

Sorry to hear about your fall & his progression.



harshedbuzz
Posted: Tuesday, August 11, 2020 4:50 AM
Joined: 3/6/2017
Posts: 2303


Mary-

Do call hospice. It's not your PCP's call on whether he qualifies or not- hospice decides that. Many people, even professionals, look at hospice in the context of terminal cancer or CHD where timelines are different. 

For a chair, we used a lightweight transport chair. The PCP wrote a script for it which we filled at a local volunteer organization that refurbishes and distributes medical equipment for free/donation if you can afford it. Otherwise, sometimes places like Walmart, Sam's Club carry these at reasonable prices. 

In many communities, the local fire department/EMS will provide lift services for people in the community. You can call their non-emergency number to ask. 

HB
Ed1937
Posted: Tuesday, August 11, 2020 6:40 AM
Joined: 4/2/2018
Posts: 3269


I'm sorry you have been put in that difficult position. I bought a wheelchair from Goodwill for $20.00. It is fairly small, so it will fit through normal 32" doorways. It's an older model, but like new. I can very easily sit in it, and I am 170 lbs.

If he should fall, DO NOT try to pick him up. You will only put yourself back in the hospital.


Rescue mom
Posted: Tuesday, August 11, 2020 6:52 AM
Joined: 10/12/2018
Posts: 1594


As others said, all hospices I’ve known in 2 states do not use that “six months to live” guide anymore. Many dementia patients IME have been on Hospice much longer. Nor does hospice require a doctor to ok it. 

You contact the Hospice, they come to you and do their own assessment. They say it’s sad how many people wait so long to get their help, when the people could have been helped much sooner. You do, however, have to find a local Hospice —google I guess, or an aging organization could help—and ask.  Some areas have several to choose among. If one doesn’t sound right or workout, call another.


Seasons In The Sun
Posted: Tuesday, August 11, 2020 7:28 AM
Joined: 5/21/2018
Posts: 242


McCott, Please call Hospice. That six month rule does not apply to dementia cases. My wife's been on Hospice care for 19 months now. If one Hospice agency says no call another. Best wishes to you.
Army_Vet60
Posted: Tuesday, August 11, 2020 7:59 AM
Joined: 6/21/2019
Posts: 800


McCott wrote:

Biker and Army Vet:  are you saying that I can somehow contact hospice on my own without a medical referral?  I don't have any idea how to do that but will start Googling tomorrow.

Army Vet - what kind of wheel chair did you get?  I am not planning to take him out, just to wheel him around our first floor.

Thank you both, Mary

Mary,
Hospice supplied me with a standard light weight wheel chair.  It was easy to pack in the car so I could take my wife out to karaoke while she was still able to enjoy that.
If your spouse is cared for at home, Hospice will supply you with a wheelchair, bed, oxygen, a toilet, hygiene supplies, medicine, etc, and Medicare covers it. As long as it is tied to his Dementia. 
When Hospice approves him, the rep will go over what is covered, and then you'll go over a list of supplies to choose what you need for him.

That was my experience with getting my wife in Hospice Home Care.


Jo C.
Posted: Tuesday, August 11, 2020 8:29 AM
Joined: 12/9/2011
Posts: 11114


Hello Mary; yes, you can indeed contact Hospices yourself, AND Hospice will obtain the physician's order once they feel the patient is acceptable for admission. Medicare does indeed have that six months or less to live criteria, BUT that is not a hard/fast rule when it comes to dementia.  Many of our Members have had LOs on Hospice for over a year; some for up to two years.  If your doctor refuses to sign your LO into Hospice, then Hospice can manage to overcome that obstacle and obtain an order; you will be in good hands. Hospice by the way is also for support of the Caregiver as well as for the patient.

In both my professsional and personal experience, it is best to use the larger Hospice entities rather than the small "Mom and Pop" ones.  Reason is staffing, ability to respond and services as well as consistency.

We also want to have a good fit.  In doing this, if you wish, it is a helpful to contact three Hospices in your area; when calling, do not use the telephone answerer or admitting coordinator to discuss your husband's needs. Instead, ask to be transferred to the Nursing Supervisor.  If asked the reason, simply say it is, "private."  That will be honored.

The Supervisor can discuss your husband's condition with you, answer questions, and you can inquire about their services and philosophy; after speaking with the several Hospices, you will probably be able to feel which one will be the best fit.

If a person has Medicare as the payor, one may change to a different Hospice during any one Certification Period. Hospice will explain Cert Periods with you.  Hospice will also have "Respite Days," a benefit that can be used at intervals, usually a week or two that a LO can be temporarily admitted to a NH Hospice contracts with so that the Caregiver can get some rest and recouperative time.  Hospice follows in that setting.

All equipment needed will be supplied and it is done very fast; often within a few hours and never more than a day.  You will also get a bath aide two to three times a week; a Social Worker and your own RN will be assigned who will visit at intervals.  RN visits will increase if there is a particular condition that needs more attention and you will have a 24 hour contact number for urgent needs.  You will also be given a medication kit that covers all sorts of physical needs issues.

If the time comes that a care facility becomes a necessity, Hospice can also follow your husband there which is good for extra eyes, ears and hands; especially in time of coronoavirus.

NOTE:  Mary; be careful of pushing a wheelchair, especially if you have carpeting at home. Even a lightweight wheelchair can be hard to push on most carpets.  Pushing or pulling a wheelchair may impact upon your back.  It may be easier to have a bedside commode which Hospice can provide.

You can opt out of Hospice any time you wish, that is not a problem.

You are a champion Mary and have done a herculean job of managing everything under the most challenging of circumstances.

Let us know how you are, and so hope you find just the right services for what is needed.

J.


Jo C.
Posted: Tuesday, August 11, 2020 8:32 AM
Joined: 12/9/2011
Posts: 11114


P.S.  Forgot to mention:   Has your husband been checked for one of those silent UTIs?   Just one of those things best done.  A UTI can cause weakness and changes not only in behaviors but in cognition and function.   Just an "in case" sort of idea on a, "no stone left unturned" sor of idea.

J.


Stuck in the middle
Posted: Tuesday, August 11, 2020 8:40 AM
Joined: 6/4/2017
Posts: 641


McCott, I have a close friend and neighbor whose husband lost the ability to walk and to use his right hand a month ago, due to Alzheimer's.  She is 59" tall and walks with a cane.  He spent the weekend in hospital ruling out treatable illnesses, and is now in a nursing home.  She cared for him at home as long as she could.  A wheelchair is not a lot of help if he can't transfer and no one is home who can lift him, for example if he needs toileting.

I can help my wife up from the floor if needed, because I'm quite a bit bigger than she is.  On the rare occasion that I fall, she has to just get out of the way.  


Cynbar
Posted: Tuesday, August 11, 2020 10:32 AM
Joined: 2/29/2020
Posts: 191


Yes, as others have said, call one of the hospices in your area and ask for an eval. They will decide if he qualifies, and there seems to be some variation among companies in how they  interpret the guidelines--- in other words, some are easier to get a patient on service. If the first hospice says no, try a different one. They do need to get a signing physician, but if yours still won't sign after hearing they think your DH qualifies, they may be able to use their own medical director.

Of course, even if he signs onto hospice, they won't send in care 24/7. You will still need to figure out how to provide his care if you want to keep him at home. My DH uses a walker, is unsteady sometimes and falls. I can't get him up by myself, and have had to call 911 a few times for help.They were glad to get him off the floor and back in his chair, were quite gracious about it but of course I can't call them frequently. What has really helped us is a bed/chair alarm -- this goes off when he tries to get up, so I can come over to assist him(mostly with cueing and reminders.) It also helps wake him up, make him more alert as falls are more of an issue when he is tired. We do have a transport wheelchair but don't use it in the house. The alarm has been very successful in cutting the number of falls way down. 


Bholmes
Posted: Tuesday, August 11, 2020 11:08 AM
Joined: 2/24/2020
Posts: 103


I agree with others that it may be time to look into Hospice. Try googling hospice and I agree a local program would probable be the best.

I was fortunate to come across a program that has been so helpful here in AZ - https://www.hov.org/dementia/palliative-care-for-dementia/ affiliated with a Hospice program. I needed something to help as we progressed through this terrible disease and they have really been helpful. Made me understand that I could not do it all alone was the biggest benefit, that it was apparent after over 5 years of this, that I  needed to hire some caregivers. I have yet to call there helpline, but I have one 24/7 - I almost did this weekend when I was having trouble, but I have monthly phone conversation with a case manager and we have talked about progression if my DW etc. and my mental health - they care about how I am doing. 

I have had a couple of in-home visits also and basically plan on using them once DW needs Hospice care and for end of life decisions etc - my hope is to keep DW at home as long as I can. 

I do understand the fall issue as my wife had one incident where she could not get up. I and a caregiver assisted her in getting up - I am worrying more and more about this as her vision and just overall decline in health -  walking - she shuffles more and body posture is not as upright.

I wish you the best of luck in finding help.

- I hate this disease.


McCott
Posted: Tuesday, August 11, 2020 4:11 PM
Joined: 8/22/2017
Posts: 490


Thank you all so much.  Why doesn't his physician know this about hospice and dementia?
We live in an alternate universe and seem to be the only ones who know what dementia is like. 

I really appreciate the advice about hospice, and the idea of having help suddenly seems possible and more than that, necessary.

I am being very careful of my back, as I learned my lesson the hard way.  I don't know if I ever raved about my neurosurgeon here, but he was fantastic -- I'm assuming and was told he was a top notch surgeon, and I'm sure that's true, but he was also an amazing human being who let me go on about my husband and told me stories about dementia in his family. He is what is called in Yiddish a mensch (is it just Yiddish, or does it have the same meaning in German?)

Again many thanks and I am going to look up hospices now.  Jo C I appreciate the advice on large versus small ones.


Jo C.
Posted: Thursday, August 13, 2020 6:19 PM
Joined: 12/9/2011
Posts: 11114


Hello today Mary; just wanted to drop in and let you know you are being thought about.

J.